Document Display

Initiate a new search within the currently selected document
Show document key fields and properties
Include current hits
Describe the error you saw:
E-mail Address (Highly Recommended)
When you have finished entering your information, click the Submit Error button.

Page 1 of 149 Previous Page or group of Pages Previous Occurence of Search Term Reload with a larger image Reload with a smaller image

<title>Symposium on Health Research and Needs to Ensure Environmental Justice: Executive Summary & Proceedings</title>
<type>single page tiff</type>

     Symposium on Health
      Research and Needs
            to Ensure
     Environmental Justice


       February 10-12, 1994

  Crystal Gateway Marriott Hotel

        Arlington, Virginia

 National Institute of Environmental Health Sciences, NIH
     NIH - Office of Minority Health Research
       U.S. Environmental Protection Agency
National Institute for Occupational Safety and Health, CDC
   Agency for Toxic Substances and Disease Registry
          U.S. Department of Energy
   National Center for Environmental Health, CDC


 Executive Summary	3


 Welcome and Introduction	3

 Opening Addresses	3

 Goals and Objectives	5

 Lunch Address: Education and Human Resources	6

 Partnering for Solutions: Opportunities for and Impediments
      to Interagency and Intergovernmental Cooperation 	7

 February 11: Opening Addresses	9

 Lunch Address: Native American View	13

 Afternoon Plenary Session: Challenges to Conducting
      Meaningful Health Research 	15

 Informal Press Conference	16

 February 12: Morning Plenary Session
      Opening Addresses  	17

 Lunch Address	21

Wrap-up: Summary Recommendations From Core Groups 	22

Closing Session	29


Respiratory Diseases	31

Symposium on Health Research and Needs To Ensure Environmental Justice	

Lead Poisoning	35

Hazardous Waste Problems	39

Pesticides	43

Workplace Hazards	47

Superfund 	49

Environmental Justice Press Conference	52


 Breakout A:  Environmental and Occupational Health Research Needs
             To Eliminate Lead Poisoning	A-l

 Breakout B:  Occupational and Environmental Cancer 	B-l

 Breakout C:  Chemical Accidents Research Needs	C-l

 Breakout D:  Surveillance Research Needs	D-l

 Breakout E:  Model for Technical Assistance: Identifying,
             Articulating, and Documenting Problems	E-l

 Breakout F:  Awareness/Education and Monitoring Components of
             Successful Models of Community Empowerment	F-l

 Breakout G:  Environmental Health Education in Academic Settings:
             K-12 and Higher Education	G-l

 Breakout H:  Environmental Health Research Policy Action and
             Needs: Focus on Dioxins, Furans, and Polychlorinated
             Biphenyls  	H-l

 Breakout I:  Ethical Issues in Environmental Health Research and
             Data Collection	 1-1

 Breakout J:  Environmental Health Research Policy Action and
             Needs for Tribal Governments and Indigenous People:
             Regional Examples of Contamination, Health Effects
             and Studies, and Economic Incentives That Lead to
             Pollution	j_l

 Breakout K:  Outreach and Accountability: What Can We Learn From
             Asthma?  	K-l


 Breakout L:  Pollution Prevention Through Economic Empowerment	L-l

 Breakout M: Radiation Experiments on U.S. Citizens 	 M-l

 Breakout N: Environmental and Occupational Health Research Needs
             To Eliminate Respiratory Disease 	N-l

 Breakout O: Environmental and Occupational Health Research Needs
             To Eliminate Pesticide Exposure Problems (and Community
             Issues)	O-l

 Breakout P:  How To Conduct Community-Based Health Surveys	P-l

 Breakout Q: Environmental Health Research Policy Action and
             Needs for Tribal Governments and Indigenous People:
             Setting Standards and Addressing Institutional Barriers
             Within and Outside Tribal Governments	Q-l

 Breakout R:  Right To Understand and Right To Act: Effective
             Risk Communication and Worker Training (Focusing on
             Workers' Rights)  	R-l

 Breakout S:  Models for Academic Researchers and Institutions To
             Promote Community Participation  	S-l

 Breakout T:  Models for Local and State Governments To Promote
             Community Participation in Environmental Health
             Education for Elected Officials	T-l

 Breakout U: Children as Sensitive Populations: Research Needs	U-l

 Breakout V:  Pollution Prevention and Intervention: The Electronic
             Industry Good Neighborhood Campaign—The Accountability
             Measure for SEMATECH and Other Semiconductor Industries  . V-l

 Breakout W: Research Needs To Address Multiple Risk Factors	 W-l

 Breakout X:  Outreach and Accountability: What Can Be Learned From
             the Lead Poisoning Problem	X-l

 Breakout Y:  Occupational Exposure Prevention  	Y-l

 Breakout Z:  Pollution Prevention and Health Intervention	Z-l

APPENDIX: Abbreviations and Acronyms	A-3


               of the

Symposium on Health Research and Needs
    To Ensure Environmental Justice

                                                           Executive Summary

       The Symposium on Health Research and Needs To Ensure Environmental
 Justice, focusing on environmental quality and justice, was convened on
 February 10-12,1994, as a collaborative action to help close the gap between the
 health of disadvantaged groups and the rest of the nation. The cosponsors of the
 conference included the National Institute of Environmental Health Sciences
 (NIEHS), the United States Environmental Protection Agency (EPA), the Nation-
 al Institute of Occupational Health and Safety (NIOSH), the Agency for Toxic
 Substance and Disease Registry (ATSDR), the Department of Energy (DOE), and
 the National Center for Environmental Health.1

 Plenary Sessions

       Community representatives at the plenary sessions noted that people of
 color are particularly likely to live in contaminated communities and challenged
 symposium participants to build on the symposium's racial diversity to  fight
 environmental racism. In one example, a community in southwest Tucson has
 struggled to address health problems related to a Superfund site and contam-
 inated ground water. Communities in west Dallas, southeast Chicago, and Chat-
 tanooga have also confronted multiple pollution problems. The Cheyenne Nation
 has dealt with mining wastes and air pollution without government assistance;
 other Native Americans have also been neglected. During question-and-answer
 periods, many more examples of problem areas were cited. One government
 speaker declared that it is time to address the potential cumulative impacts of
 multiple chemical exposures.

       Government representatives asked for increased cooperation among
 government agencies, as well as among Federal, State, and local governments.
 They also urged governmental cooperation with representatives from commun-
 ities, labor, and academia. They noted the importance of research in resolving
 environmental justice issues and detailed six research objectives, including
 identifying at-risk populations, enhancing public participation and communication
 to identify community needs and priorities, and increasing the number  and
   1 The cosponsors note that the summarized views and quotes are the views of the
symposium presenters and audience participants, and do not necessarily represent the
views of the symposium's sponsoring government agencies or any other U.S. government

Symposium on Health Research and Needs To Ensure Environmental Justice	

diversity of environmental health professionals making research decisions. One
community speaker pointed out that diversity among scientists can also lead to
better choices and that cleaning up the environment does not have to mean
sacrificing workers' jobs in industry. An academic representative called for
replacing the research paradigm for protecting the environment with one that
emphasizes prevention and intervention. Community representatives also de-
clared that the government should not wait for research results when there is
evidence of toxicity, but should step in immediately to protect workers and

      Community representatives strongly agreed with the need for community
input as soon as possible, whether for research or public health issues, and also for
relevant community education. In one model program, Xavier University and the
local community are equal partners in planning and conducting research. EPA is
spearheading a pilot intergovernmental effort in Cleveland to work with the
community to encourage economic development through environmental cleanup.
Another important first step was the signing on February 11,1994, by President
Clinton in the presence of Vice-President Gore of an Executive Order on Environ-
mental Justice requiring 16 Federal agencies to incorporate environmental justice
issues into their work.

      The recommendations of 20 core groups that each met several times to
discuss environmental justice issues were presented the symposium's final plenary
session. A separate executive summary and report are available on these recom-
mendations. Symposium organizers acknowledged the rage and frustration
expressed by many participants, then  asked participants to help make their
recommendations reality through communicating with government agencies,
building alliances, and contributing to research.
Central Issues Sessions

       Six subjects were addressed in a series of sessions on central issues:
respiratory diseases, lead poisoning, hazardous waste problems, pesticides,
workplace hazards, and EPA's Superfund. Differential exposures and potentially
different susceptibilities to pollutants are likely to be found in different subgroups
of the general population, and a statistical association was found between proximi-
ty to a major source of pollution and ethnicity and income. Yet, few studies have
focused on low sorioeconomic areas and minority populations. Moreover, we do not
yet know whether findings on human subjects in experiments apply to chronically
affected individuals.

       Community representatives proposed that the community help to educate
itself, identify research needs—including social relevancy—and answer concerns
about who is exposed to what toxins and how to prevent such exposures. The
community also must confront corporate power in transportation, industrial, and
regulatory policy. In one example of community self-help concerning respiratory
diseases, ordinary people in one Los Angeles area, (primarily Hispanics and

                                                            Executive Summary
 Latinos) contacted in outreach and educational programs demonstrated willing-
 ness to help improve community air quality. Now a campaign, with followup
 evaluation, is planned that includes consumer tips in Spanish on reducing smog,
 along with information on smog-related health problems, car maintenance, and
 relevant local ordinances.

       A large study of asthma among inner-city children in eight cities is already
 underway. The second phase of the project will propose and test interventions to
 reduce asthma severity and morbidity, based on the risk factors identified in the
 first phase. It appears that those factors may include smoking in the household, as
 well as high levels of cat and cockroach allergens, but not the house dust mite
 identified in more "middle class" studies.

       More than 6 percent of children screened for lead poisoning in 1993 had
 elevated blood lead levels, indicating the scope of the lead poisoning problem in
 this country. An interagency Federal task force has been established. The Centers
 for Disease Control and Prevention (CDC) funds lead poisoning prevention
 programs, as well as programs that track and monitor children with high blood
 lead levels. Besides conducting research, EPA is working with the Department of
 Housing and Urban Development (HUD) on a community-based lead abatement
 demonstration program.

       One local program in Alameda County, CA, was successful in raising funds
 to educate the community about lead poisoning and combat problems when the
 county created a special district in which fees were assessed on homes built before
 1978. This community was also successful in getting the State to require several
 industries to pay for testing children for lead poisoning. Another community
 success story involves a $40 million award to an impoverished community in
 Colorado after many years of exposure to heavy-metal pollution from a smelting

       The problems of one individual whose new home turned out to be contam-
 inated with lead paint at  levels unsafe for young children led to her political
 involvement. She later completed training as a lead-based paint inspector and
 reported that the training program was not readily accessible to the community.
 Other conference participants added that many programs concerning lead pollu-
 tion problems have not been carried out in a manner appropriate to community

      Addressing hazardous waste problems, one government representative
 noted that NIEHS has been responsible since 1987 for establishing a university-
 based research program that has supported the work of more than 1,000 scien-
 tists. He called for a multidisciplinary research approach that examines the
 combined impact of pollutants—as well as  the impact of pollutants acting separ-
 ately—and that looks at how these substances change as  they move through
 organisms  and the environment. It is important to look at effects on children, not
just  adults.

Symposium on Health Research and Needs To Ensure Environmental Justice	

      One epidemiologist told how an unusually high rate of mortality from three
diseases in Nogales, AZ, led some epidemiologists and community members to
search for potential hazardous exposures that might correlate with multiple
myeloma, systemic lupus, and leukemia. He cautioned that research data for any
community must be as accurate as possible because of the reluctance of State and
local health departments to conclude that clusters of excess disease above expected
levels are caused by environmental factors. Another researcher said that flaws in
studies of environmental justice should not be used to deny or distract from the
existence of environmental injustice. He proposed an "activist" research agenda
that evolves from collaborating with the community and that classifies environ-
mental burdens by how they are experienced by the affected communities. Other
scientists and community representatives also urged community involvement in
research and in generating the political will that can ensure that research findings
are translated into law and policy.

      Exposure to pesticides and other chemicals is a major problem for
America's 4 million farmworkers and their children, who live and socialize near
the  fields where they work. Yet, States have taken few protective measures;
unions have done better than government in requiring protection. Researchers
have difficulty studying migrant workers because of their mobility. Several
research programs on pesticides were discontinued, and pesticides are only one
component among many chemicals in the remaining National Human Exposure
Assessment Survey. Federal interagency collaboration is needed, because pesti-
cides and their health risks fit under the auspices of four Federal agencies.

       Since preliminary evidence suggests pesticides affect the immune system,
good immunoepidemiological studies are needed. Safety levels of exposure for
adults won't protect children, who are more susceptible than adults. Research
must look for potential delayed and latent effects of exposures as well as immedi-
ate effects. Pesticides have been linked to tumors, reproductive effects, birth
defects, and mutagenic effects.          ,  	

      A government representative discussing workplace hazards pointed out
that under the Occupational Safety and Health Act, employers are required to
provide information about safety and health hazards and protective equipment,
workers are expected to use the information and equipment, and a complaints
procedure is spelled out. However, independent contractors—25 percent of the
workforce—are not covered by workplace safety regulations for employees.

      A researcher proposed that more and better occupational health research is
needed, addressing socioeconomic, ethnic, and racial issues and obtaining data
about toxins. The available literature suggests that people with low incomes and
people of color are more likely to get occupational diseases and be exposed to
toxins. A community representative said that it is time to implement more
effective primary and secondary prevention.

      A government representative explained how EPA applies a hazard ranking
system to place Superfund sites on the national priorities list (NPL) and then

                                                            Executive Summary
 studies each site to determine risks and how much must be cleaned up. Recently,
 EPA changed the criteria to allow more sensitivity to bioaccumulation and
 ecosystems and recognized that environmental justice communities may need a
 special focus.

       A Native American suggested that the Federal government must change
 national priorities and that problem analysis must include tracing the path taken
 by the waste that people create. Another community member suggested that the
 Superfund process is rigged, that government personnel poisoned many sites
 themselves, and that communities must get involved.

       A researcher commented that there are major gaps in health data, particu-
 larly regarding the problems of color and people in poor communities. However,
 she cautioned that we cannot afford to wait until all the questions are answered to
 devise public health solutions. A government representative spoke of ATSDR's
 charge to look at the effects of environmental contamination on communities and
 to work on preventing and decreasing adverse health effects. One result was a
 1990 conference on minority health in the Nation.
 Press Conference

       Government representatives spoke about the kinds of studies and informa-
 tion that can be developed to resolve questions about the impact of the environ-
 ment on minority populations. One example involved pesticide residues in body fat
 that probably came from subsistence agriculture and fish. Science played a critical
 role, by developing measures to determine lead levels so that exposures to lead
 poisoning could be identified. University-based Environmental Justice Research
 Centers linked to communities are being developed to conduct scientific research,
 monitor exposure, and provide outreach to their communities. Furthermore,
 researchers need to understand whether certain alleged toxins are causing

       Before initiating prevention-based research with the funding expected
 under health care reform, NIEHS will involve the regulatory agencies to ensure
 that it asks the right research questions. While the most humane, cost-effective
 approach is to prevent exposures, some prior exposures exist as a result of previ-
 ous pollution that has since been stopped. Research that NIEHS conducts on
 noncancer health effects may help regulatory agencies to  develop more rational

      A potential interagency agreement would send mobile units to communities
 to monitor exposures measuring what is in the air, water, and soil. At sites on the
NPL, ATSDR will work with NIEHS on these activities. Government representa-
tives expressed determination in attacking environmental factors that are hazard-
ous to the poor and less educated people who live where such exposures occur.

Symposium on Health Research and Needs To Ensure Environmental Justice
Breakout Sessions

      In discussing environmental and occupational health research to elimi-
nate lead poisoning, one physician described the breadth of the problem in
terms of the millions of children affected, the many potential sources of lead, and
the blood lead levels that are now known to be toxic to the brain (levels much
lower than was previously thought). Additional research is needed on lead's
contribution to chronic diseases and possible damage to male and female reproduc-
tive systems. The best strategy is prevention through cleaning up the environ-
ment. NIOSH and CDC are exploring the magnitude of the problem that occurs
when workers expose their children by bringing lead home from their workplaces
on their clothes, skin, and hair.

      CDC's current program focuses on children at high risk of childhood lead
poisoning and includes prevention and community activities jointly sponsored by
HUD, EPA, the Department of Labor, and other agencies in the Department of
Health and Human Services, as well as collaboration with State and local health
departments. Children's blood lead levels did decline as lead in gasoline declined,
and other strategies for lead reduction are being examined. Current policy is to
universally screen children under age 6 unless an area can prove it has no lead
poisoning problem. In studies  of lead-poisoned children, upper-income children
had better reversal of lead effects than poor children, for reasons not yet known.
The effects of early lead poisoning can carry over to older children. Session
participants desire legislation  for a "polluter pays" tax to generate funds for
cleaning up environmental sources of lead.

      With regard to occupational and environmental cancer, it is easier to
estimate exposure to toxins in the workplace than in the community, because
workplace exposures are usually higher.  Four to 20 percent of cancers may result
from workplace exposures, but studies are complicated by the health influences of
multiple chemical exposures, smoking, sotioeconomic status factors, and access to
medical care. Furthermore, national statistics are inadequate for women and
minority groups, although changes in data collection have been  recommended.

      A large racial difference is found in overall cancer 5-year  survival rates,
with African Americans at 39 percent and white Americans at 54 percent.
Researchers need to study exposures and risks of individual types of cancer among
minority and underserved populations to identify potential differences from white
populations and to initiate preventive measures. Alternatives to risk assessment
that involve the affected community are  needed in these studies, because commun-
ities are concerned that government agencies are unmotivated in promoting the
risk assessment process.

      Chemical accident research needs to emphasize methods to measure
chemical releases soon after their release, in order to establish a relationship
between the exposure and any subsequent illness. Various guidance levels suggest
whether or not the amount released is environmentally safe, but information on
long-term exposure is needed as well.

                                                            Executive Summary
       Some unions have action plans, including training, to help chemical
 industries implement the national Process Safety Manufacturing standards, which
 have employee participation requirements. Chemical industries have developed a
 voluntary Community Awareness and Emergency Response program to prevent
 and coordinate responses to accidents. Community representatives suggested that
 companies need to use community panels more seriously and that communities
 would participate more effectively if the companies funded an independent
 community technical advisor. Examples were cited in which some companies did
 not cooperate in trying to resolve community concerns.

       Improved surveillance research is important for low-wage workers,
 low-income communities, and communities of color, for whom the available data
 on occupational disease are very limited. Surveillance can identify new opportun-
 ities for prevention, define the scope of a problem, and target prevention
 resources. ATSDR is working with other agencies on surveillance projects in west
 Dallas and Texarkana, TX.

       Physicians could play a critical role in surveillance research by recognizing
 disease, disability, or untimely deaths that are likely to be work related. Commun-
 ity participants want surveillance of hazards, not just of sick workers, and want
 results disseminated in a format understandable to workers. Unions are trying to
 include ongoing surveillance in standards of the Occupational Safety and Health
 Administration. Community groups and researchers may need facilitators to help
 them work together. Research grants should include requirements for community

       In a session on models for technical assistance—identifying, articu-
 lating, and documenting problems—community representatives cited problems in
 having the community groups that apply for  technical assistance grants follow the
 same procedures as universities, in requiring them to wait for reimbursements,
 and in limiting the activities the grants will fund. Suggestions were made for how
 both community groups and EPA could improve the process.

       In reporting on components of successful models of community
 empowerment, one community leader in lead poisoning education recommended
 several strategies: using patience and persistence to get the media to respond;
 targeting obstetric units of hospitals; seeking company donations; asking local
 health departments for better communication about lead poisoning and approp-
 riate lead abatement procedures; and working for relevant State legislation.

       One university works with nearby communities to build model programs
 around various health issues, training community advisors on health and
 receiving community input. Through a coordinating network, a coalition on
 pesticide issues pools fundraising, administration, and other resources  for its
member groups. Community representatives asked the Federal government's
interagency coalition focusing on lead poisoning to collaborate with community

Symposium on Health Research and Needs To Ensure Ehv/ron/nenfa/ Justice	

       Conference participants recommended that environmental health
education involve a series of activities, from general public science literacy to
training at advanced levels. They also urged that people of color receive particular
encouragement, both early in their education and through such mechanisms as an
environmental consortium that DOE developed among minority colleges and
universities. Communities want programs for non-English speakers and need
environmental education curricula to be more available, both to students and to
the community in general. Some DOE and NIEHS funding is available for
curricula, but community activists must petition their school systems for the
inclusion of environmental education materials.

       One speaker described the large potential exposure of the U.S. population
to dioxin and related compounds, which are emitted in several major manufac-
turing processes, and the absorption by our bodies of significant amounts of
dioxins, furans, and polychlorinatedbiphenyls (PCBs). Not all potential
health effects are known, but dioxin can cause mortality, embryo or fetal toxicity,
low birth weight, and birth defects of the immune and gastrointestinal systems, as
well as gross birth defects and possible reproductive effects. There is some evi-
dence that dioxin may also be a carcinogen.

       Children in indigenous societies are particularly vulnerable to environ-
mental contamination taken in, for example, through fish  and their mothers' milk
In one Indian nation located near several  sites of hazardous waste, nursing
Mohawk mothers were able to lower chemical contaminants in their breast milk,
but only by radically altering their lifestyle to avoid fish consumption. Through
establishing good cross-cultural communications, researchers have been able to
interact with the community.

       While scientists are engaged in long-term studies of dioxin exposures of
populations near industrial sites, some conference attendees stress protecting and
training workers to minimize exposure and replacing technologies that create
harmful by-products with safer methods and processes.

       The session on ethical issues in  environmental health research
questioned whether health care should be provided to communities being studied
for exposure to  hazardous chemicals. Another issue concerned whether to offer
testing for exposures to chemicals when there is  not enough information about the
effects of those chemicals to either counsel or treat the persons exposed. Some
studies were conducted for too short a period or  on too small a group to provide
definite proof of safety or harm, and others lacked sufficient information on the
amount and kind of chemical exposure. Community representatives suggested
that successful studies would involve communities from the beginning. Separate
handbooks to guide scientists and community members on the ethical issues
relevant to the study should be developed.

      While discussing Federal programs and federally funded community
asthma projects,  one session asked about outreach and  accountability. EPA's
Indoor Air Program on asthma provides curricula, guidance documents, and


                                                            Executive Summary
 training courses on preventing exposure to indoor pollutants; targets specific
 groups, such as those choosing ventilation and building materials; and recently
 funded production of a research agenda and recommendations for action. The
 National Heart, Lung, and Blood Institute (NHLBI), which reported in 1992 on its
 health behavior research working with minority populations, is also targeting
 minorities in a public education effort concerning asthma and in new collaborative
 projects on minority health. In an earlier collaborative project, a university and a
 clergy group worked together for 4 years under an NHLBI grant to reduce
 smoking in an east coast community. While an NHLBI task force has developed a
 list of research needs, some conference participants prefer to emphasize
 preventing indoor and outdoor pollution and training for minority researchers.

       In addressing pollution prevention through economic empower-
 ment, one government representative noted that minority contractors had been
 excluded from cleanup activities under the Installation Restoration Program and
 that each cleanup dollar spent in poor communities generated far less response
 than in wealthier communities (80 cents vs. 8 dollars). A historically black
 university in Mississippi is aiming for community empowerment through linked
 curricula in environmental management and economic development, community
 outreach to grassroots organizations and minority contractors, and networks to
 bring these groups together with government staff and prime contractors.

       Recognizing that millions of Federal dollars will be spent over the next few
 years for lead abatement, one community representative proposed that companies
 demand that municipalities buy services within their own borders to keep that
 money in their own communities. Training programs for workers were also

       In discussing recent shocking reports of government-sponsored radiation
 experiments on U.S. citizens, government representatives described the efforts
 of the  current Federal administration to open up the process of examining previ-
 ously secret records, to ask ethical and scientific questions about the situation, and
 to develop  recommendations to ensure such experimentation can never happen
 again.  One physician was concerned that his own investigations had been impeded
 by government officials and asked whether they could conduct a fair investigation;
 he also criticized many procedures in the controversial experiments as unscientific
 and unethical. Session participants, who had other concerns about the possible
 inadequacy of current procedures at  sites where nuclear materials are present,
 generally exhibited strong emotions at this session.

       In addressing environmental and occupational health research to elimi-
 nate respiratory disease, medical researchers noted that lung cancer, tubercu-
 losis, and asthma all disproportionately affect people of color and the sotio-
 economically disadvantaged; that blue-collar laborers are likely to have greater
 exposure to pollutants at work than those working in managerial and professional
 areas; and that ongoing surveillance  of workers is needed to detect disease early
 and prevent deaths. Since outdoor air pollution does not differ among groups with
different asthma rates, indoor factors need more study. An eight-site national

 Symposium on Health Research and Needs To Ensure Environmental Justice	

 cooperative inner-city asthma study is examining why asthma problems are rising
 among inner-city poor black and Hispanic children and is trying out interventions.

       In a session on environmental and occupational health research to
 eliminate pesticide exposure, farmworkers and community representatives
 described distressing incidents in which workers were sprayed with pesticides and
 became ill. They asked for better inspection and enforcement of proper procedures
 and hygiene. One researcher—noting that the many other health, economic, and
 social problems of migrant farmworkers cloud pesticide exposure studies—urged
 an understanding of political realities and of the need for workers to develop
 organizational strength. (The experiences of two communities—Austin, TX, with
 emissions from oil companies and Alameda County, CA, with lead and other
 contaminants—were included in the report on this session.)

       In addressing community-based  health surveys, community represen-
 tatives told how individuals collected the data on health problems and exposures
 in their communities when health departments were uncooperative. The Environ-
 mental Health Network is willing to help  communities with training, surveys,
 registries, and workshop development. Conferees agreed that more disease
 registries and community health clinics are needed.

       A labor activist discussing the right to understand and the right to act
 (workers' rights) said that communities and workers must work together to
 ensure environmental safety and health. Some community representatives were
 very concerned about the power of corporations, the failure of companies to train
 their employees properly, and continued exposures to toxic substances in the

       At the session on models for academic researchers and institutions
 to promote community participation, two university-community partnerships
 were  described. In one, a Texas university provides legal advice and assistance to a
 health effects study; in the other,  a consortium of four Louisiana universities and
 community representatives guides environmental justice projects.

       The session that addressed both models for local and State govern-
 ments to promote community participation and environmental health education
 for elected officials focused on a situation  in Alameda County, CA. Productive
 solutions evolved through community involvement and through taking a broad
 view of environmental exposure problems after initial resistance from some health

       A medical researcher looking at children as sensitive populations
 described how toxic materials have both immediate and latent effects, affecting
 children from embryo through adolescent. The researcher and other conference
participants were concerned that pediatric research does not include provisions for
fixing problems identified during the research. The Children's Environmental
Health Network has been formed to meet the need for data on toxic exposures in
children and to emphasize the field of pediatric environmental health.

                                                           Executive Summary
      During a session on pollution prevention and intervention, the
recorded part of the session addressed the problem of cleaning a house properly to
rid it of lead. Recommended procedures and dangerously incomplete advice from a
State official were discussed.

      The challenge of dealing with exposures to multiple toxic chemicals is
twofold: Research must address multiple risk factors, and policies must empha-
size the broad reduction of the use of toxins that can affect health. Research must
study the role of environmental factors in the development of asthma, which
disproportionately affects minorities and the poor. Research should not serve as
an excuse to delay action to help communities.

      Community participants who discussed lead poisoning and outreach
and accountability were concerned about weakened Federal regulations and
weak enforcement of existing lead exposure regulations. They proposed turning to
local and State statutes dealing with public housing conditions and public
nuisances. Community involvement was strongly recommended, as well as
sensitivity to whether one's own actions might lead to a pollution problem.

      Participants in the session on occupational exposure prevention first
heard about health problems of workers in companies that did not handle solvents
properly. Other difficulties included combined effects of certain medications with
workplace chemicals and exposure at home to workplace chemicals brought in on
clothing. A government representative noted that when a device becomes available
to reduce workplace exposures, publicity to encourage its use is crucial.

      In addressing pollution prevention and health intervention, one
government representative described how a Colorado community wanting envi-
ronmental equity educated itself and successfully sued a lead smelter; another
community sought advice from conference participants on apportioning the
NIEHS budget and told of the electronic availability of the toxicology database.
One speaker recommended that community groups not formally participate with
government agencies, but other discussants opposed this position.

      Two breakout sessions that addressed issues of indigenous people were not
recorded by the choice of the participants.


                                                           Plenary Sessions

                           February 10-12,1994
                            Arlington, Virginia

 February 10: Welcome and Introduction

       The cofacilitators, Dr. Bunyan Bryant, University of Michigan, and
 Dr. Jerry Poje, National Institute of Environmental Health Sciences (NIEHS),
 welcomed participants.
 Opening Addresses

       Dr. Kenneth Olden, Director of NIEHS and the National Toxicology
 Program, National Institutes of Health (NIH), reported that the conference
 cosponsors include NIEHS, the United States Environmental Protection
 Agency (EPA), the National Institute of Occupational Safety and Health (NIOSH),
 the Agency for Toxic Substance and Disease Registry (ATSDR) at the Centers for
 Disease Control and Prevention (CDC), the Department of Energy (DOE), and the
 National Center for Environmental Health (NCEH).2'3 The symposium is part of
 a new research and collaboration paradigm and results from 18 months of work by
 community and union leaders, government representatives, scientists, and
 academicians. Convened because environmental quality and justice are a high
 priority for Americans, it is the beginning of a collaborative interaction to ensure a
 healthy environment.
   1 These proceedings were developed from taped records of the conference.

   2 The cosponsors note that the summarized views and quotes of symposium presenters
and audience participants are their own views and do not necessarily represent the views
of the symposium's sponsoring government agencies, or any other U.S. government
  3 Organizations are referred to by acronyms after their first mention in the text. An
index of acronyms and other abbreviations appears in Appendix A.

Symposium on Health Research and Needs To Ensure Environmental Justice	

      Rose Marie Augustine, Director ofTucsonians for a Clean Environment,
noted that people of color are more likely to be victims of contaminated communi-
ties. In 1981, a 30-square-mile area in southwest Tucson, populated mainly by
Mexican-Americans, was declared an EPA Superfund site. The ground water, the
community's only source of drinking water, was contaminated by chemicals
thought to cause birth defects, miscarriages, and other health problems.
Chemicals trickled into the aquifer, creating an underground toxic plume five
miles long, two miles wide. When excessive chromium was detected in a city well
next to a government-owned defense plant run by a major aircraft company,
contamination was traced to the 1950s. Later tests of community wells showed the
chromium level was 400 parts per billion (ppb), more than the 50 ppb Federal
guideline. Trichloroethylene was 10,200 ppb, exceeding the Federal guideline by
2,000 parts. About 47,000 people used contaminated water for 20 years because
Tucson resisted testing the well field, attributing community health problems to
diet and lifestyle.  Lack of government response led to formation ofTucsonians for
a Clean Environment in 1985. Then in 1990, wells in upper-class Tucson were
shut down because a declining water table was suspected of killing trees.

      The community in southwest Tucson is mainly composed of Mexican-
Americans and people of color relocated because of a 1960s urban renewal project.
Different forms of cancer are problems in the community. Government and
science must build trust with victims like these, rather than with beneficiaries of
scientific progress. A letter from the Southwest Network for Environmental and
Economic Justice (SWNEEJ) to DOE Secretary Hazel O'Leary that was read at
the conference said environmental racism is inherent in radiation experiments,
citing tests conducted on prisoners and low-income children, who are dispropor-
tionately people of color. The letter urged a Federal interagency committee to
conduct radiation-related inquiries that include informal, formal, medical, and
scientific experiments and to expand its membership to include the Civil Rights
Commission and EPA. The committee should also report on the extent of civil
rights and constitutional violations and ensure that environmental justice is a
major focus of its work. The letter added that substantive, unrebutted evidence
exists indicating that formal and informal radiation testing and experimentation
were racially discriminatory in intent, execution, and impact.

      Dr. Phillip Lee, Assistant Secretary for Health, Department of Health
and Human Services (DHHS), asked for collaborative efforts to help solve the
problem of closing the gap between the health of disadvantaged groups and the
rest of the nation. Bringing together representatives from communities, govern-
ment, labor, and academia must continue, and the government must work cooper-
atively across agencies and departments. Early positive steps include the Federal
antismoking campaign and the DOE initiative on radiation testing. Closer cooper-
ation must occur among Federal, State, and local governments, with attention to
concerns of community leaders. A window of opportunity is open for health re-
form, including environmental issues. There is consensus about how to deal with
the crisis that the public perceives in health care. The Health Security Act, a con-
sensus response to the health care crisis, addresses such public health issues as
reducing environmental hazards and combating unhealthy behaviors, many of

                                                              Plenary Sessions
 which have environmental roots. Title III of the Health Security Act proposes
 three public health initiatives to address these environmental issues: increasing
 funds for prevention research, including environmental health studies; restruc-
 turing the delivery system so disadvantaged populations can benefit from public
 health initiatives; and revitalizing the public health infrastructure. The revitaliza-
 tion is critical because local and State governments use health budgets to finance
 care for the uninsured rather than to finance public health infrastructure. Public
 health problems, such as illness caused by water- and food-borne disease, are in-
 creasing. As part of the revitalization, funds will be available for surveillance to
 identify community health problems, such as violence, lead poisoning, and dia-
 betes, and to support community programs for controlling chronic diseases and
 preventing injuries.

       Reverend Dr. Benjamin Chavis, Executive Director of the National
 Association for the Advancement of Colored People (NAACP), declared that envi-
 ronmental racism is evidenced by the racial discrimination in environmental
 policymaking, the targeting of communities largely populated by people of color
 for exposure to environmental hazards, and the failure of government to  address
 these issues. Studies have documented the existence and impact of environmental
 racism, but little has been done. A challenge for symposium participants is to focus
 on (1) changing national behavior, politics, economics, and attitude; (2) respecting
 one another's struggles; and (3) building on the symposium's racial diversity and
 common experience to fight environmental racism.

       While some progress has been made in environmental justice, the adminis-
 tration must reverse attempts of previous administrations to blame lifestyle  for
 the illness and death caused by environmental hazards. NAACP will focus more
 energy on environmental justice and work with community groups to eradicate
 hazards that disproportionately impact people of color. Having the same passion
 for environmental justice that they have for voting rights, housing rights, and
 other injustice, NAACP and other symposium participants must build a multi-
 racial, multicultural, multilingual force for change.
Goals and Objectives

       Dr. Robert Bullard, University of California at Los Angeles, spoke of
replacing the research paradigm for protecting the environment with one that
emphasizes prevention and intervention. The current paradigm institutionalizes
unequal protection and enforcement, trades human health for profit, puts the
burden of proof on the victim, accepts using risky technologies, exploits disadvan-
taged communities, and subsidizes ecological destruction. Prevention must be an
overarching concern, applying prevention in research designs to ensure that study
results affect an array of illnesses. The public, especially disadvantaged commun-
ities, must be involved in scientific research, monitoring, and evaluation to ensure
that environmental justice is enforced and science is not seen as oppressive. In
some situations, action, not scientific study,  is needed.

Symposium on Health Research and Needs To Ensure Environmental Justice	

      Dr. Ken Sexton, Director of the Office of Health Research, EPA, noted
that research is important and necessary to resolving environmental justice issues.
The credibility of environmental justice decisions depends on science, and better
data is needed to identify risk, recognize the best prevention strategies, and
measure progress toward environmental justice. In 1992, EPA, NIEHS, and
ATSDR held a workshop to determine research needs associated with environ-
mental justice. The papers that were subsequently published in Toxicology and
Industrial Health all noted indications in the literature of environmental inequi-
ties, with authors' opinions differing on the strength of evidence and importance
of research objectives. Scientists at the meeting agreed on the need for active,
equal enforcement of environmental protection laws and for community input into
environmental health research.

      Dr. Barry Johnson, Assistant Administrator, ATSDR, presented the
following six research objectives to support the symposium's goal of developing
research strategies that eliminate environmental inequities:

      1.     Identify at-risk populations, key research gaps, and ways to conduct
             meaningful, lasting research for use in at-risk communities.

      2.     Develop new models for interagency coordination that incorporate
             community needs and priorities.

      3.     Delineate new models of prevention and intervention as part  of a
             larger research, education, training, and community outreach effort.

      4.     Increase public input and participation and enhance communication
             between agencies and communities.

      5.     Strengthen the mechanism for increasing the numbers and diversity
             of environmental health professionals trained as science advisors
             and participants in peer review of research grants and policy papers.

      6.     Develop a paradigm outline for health research that targets the need
             to ensure environmental justice.
Lunch Session:  Education and Human Resources

      Dr. Shirley Malcom, head of the Directorate for Education and Human
Resources Programs, American Association for the Advancement of Science
(AAAS), noted that there is not one public but many, and many ways to reach
them. Some people are afraid of science because of bad school experiences and
difficulty dealing with scientific terms, but the need to know is a great motivator.
If issues are presented in a way that can be understood, they will be understood,
especially if the message is for survival. AAAS is experimenting with different
modes of information, communication, and reaching people where they live and
congregate—such as shopping malls, church basements, and community

                                                             Plenary Sessions
 organizations. Radio is a powerful tool for communication, but the messenger
 must be credible, technically excellent, and have a sound knowledge base. AAAS is
 working to increase the number and diversity of people engaged in science.

       I grew up in the steel town of Birmingham, AL, where there was a choice
 between jobs and a healthy environment. Many found themselves in a degrading
 position when trying to negotiate for technologies that industry said it could not
 afford. It does make a difference if policymakers include those who personally
 know of such tradeoffs and injustices,  and individuals can make a difference in
 policymaking if they are prepared. I worry about people in the education pipeline
 in technical areas who later will affect environmental science issues. In 1991, only
 24 African Americans  completed doctorates in the physical sciences. In 1992, only
 50 African Americans  received doctorates in the life sciences. This may be an
 insufficient number to serve on educational faculties, on policy-setting boards, and
 as technical advisors. What can we do  about it? Now is the time to discuss
 Partnering for Solutions: Opportunities for and Impediments to
 Interagency and Intergovernmental Cooperation

       Kathleen McGinty, Director of the White House Office of Environmental
 Policy, stressed that while the total impact on human health of a single chemical
 from a single source is unknown, it is nevertheless time to understand the cumula-
 tive impact—the additive effects on health and synergies that may exist among
 chemicals. Furthermore, individuals and communities must have access to real,
 meaningful information and have a role in decisionmaking that affects their
 communities. An example is the administration's Superfund proposals, which
 state that all communities are entitled to equal health and protection and call for
 community information centers, technical assistance grants, and identification of
 high-impact areas through a new environmental justice grants program. Commun-
 ities will help decide how clean a Superfund site will be. Many agencies besides
 EPA and DHHS must be involved, including DOE and the Department of Housing
 and Urban Development (HUD).

       Deeohn Ferris, Director of the Environmental Justice Project, Lawyers
 Committee for Civil Rights Under Law, Washington, DC, described government as
 a set of service units with a duty to protect the interests of those it
 serves—people's health and their ability to be educated—and to provide transpor-
 tation, protect environments, make the food supply safe, protect economic
 interests, protect workers, and protect rights to equal opportunity. Government
 service is built on communities, and any interagency cooperation and coordination
 must include community input at the beginning and throughout the process.

       The government has a history of ignoring those most affected and injured
by environmental events; yet, they are a fundamental reason for establishing
governments. An overarching issue is the Federal government's obligation to
ensure that States protect the environment of those in their borders. In west

Symposium on Health Research and Needs To Ensure Environmental Justice	

Dallas and southeast Chicago, as enterprise zones are developed, watch to be sure
that they do not themselves foster adverse health consequences and negative
environmental impacts. West Dallas was victimized by a RSR Corporation lead
smelter that is now being relocated to Mexico. Despite having information on high
levels of lead pollution accumulating over decades, the government waited 20
years to study the problem. By then, the damage was such that 16 square miles of
west Dallas were designated as a Superfund site. After a $25-million cleanup,
HUD plans to build public housing for 2,000 people there. This plan raises a fair-
housing issue for HUD.

      Southeast Chicago is ringed by many sources of pollution and receives
waste from across the nation.  A focus on exposure is needed, instead of a case
study that was done focusing on risk-based examination. Esoteric principles like
risk assessment will not solve problems in these communities.

      Furthermore, information on the environment should be presented in
language and vocabulary people can understand. If not, this meeting on intera-
gency cooperation may be in vain. The word "environment" needs redefining. It is
where people live, work, and play, not just an area to be protected for hunters and
fishermen. EPA and the research agencies must be mobilized, with social service
agencies, health care entities, education and training organizations, and others.
Government-funded voter registration drives must strengthen the community so
that irresponsible elected officials in places like west Dallas and southeast Chicago
aren't reelected.

      Elliot Laws of the Office of Solid Waste and Emergency Response
(OSWER), EPA, said that the issues of this office relate to Superfund sites,
landfills, hazardous waste incinerators, other hazardous waste facilities, and
underground storage tanks. For EPA to succeed in dealing with hazardous wastes,
OSWER must be effective. Cleaning up a Superfund site may not always help
community members who suffer from the effects of living near a site that is not
adequately supervised, and who may need health care. If OSWER has no authority
to respond, it must bring in the State and local agencies that do have such author-
ity. Furthermore, DHHS should respond at community meetings when people ask
for services.

      EPA has an intergovernmental effort under way to revitalize urban brown
fields, abandoned after being contaminated by environmental pollution. The
Cleveland brown fields pilot project, designed to encourage economic development
through environmental cleanup, is a collaborative effort between the Federal
government, the State of Ohio, and the local county commission. The program is
designed to attract business back to inner cities, create jobs, and improve living
standards for urban communities. EPA plans to repeat this pilot at other sites,
training local workers and hiring them to participate in the cleanups. In Cleve-
land, a college environment curriculum is grooming people to become chemical
engineers, toxicologists, and environmental managers.

                                                                 Plenary Sessions
       OSWER signed a cooperative agreement with the NAACP national office,
 awarding $252,000 to study the impact of waste sites on life quality in some
 low-income and minority communities. Health effects in those communities will
 be studied, aided by citizen participation.
 Panel and audience comments

 * Phyllis Glaser: An east Texas mother from a rural, low-income minority community,
 described life near a large, commercial, hazardous-waste-injection well facility—one of 10 in
 the country. She and Mothers Organized to Stop Environmental Sins have sought assistance
 for 12 years from Federal and State regulatory agencies.

 * Ms. Ferris: She believes deep-well injection should be made illegal. She suggested that
 Glaser meet with individuals and groups who have successfully sought environmental justice.

 * Audience member: Environmental justice is blocked by budgetary problems, racism, and
 willful ignorance of government officials.

 * Dr. Torres: We are trying to ensure that statutes are followed and community concerns are
 strengthened, possibly through litigation.

 * Phyllis Sikorski: Her 13-year-old son was diagnosed with non-Hodgkin's lymphoma when
 he was 5. She wants the National Cancer Institute (NCI) to help her learn if the child is part of
 a cancer cluster in her Detroit suburb. A cancer registry and birth defect registry are needed in
 Michigan and across the nation. The U.S. census in 2000 should include questions on family
 cancer incidence and its type, the existence of birth defects, and the birthplace of an affected
 family member.

 v Native-American audience member: EPA does not always listen to the traditional elders
 of indigenous people, who have monitored the well-being of America's environment for
 thousands of winters. The scientific community should be aware of other knowledge
 February 11:  Opening Addresses

       Dr. Linda Rae Murray, Director of Winfield Moody Health Center in
 Chicago, observed that minority workers have the dirtiest jobs in the most
 polluting industries. Before uranium mine tailings poisoned Navajo lands, Native
 Americans were in the mines dying from lung cancer. Elsewhere, without warn-
 ings written in languages that non-English-speaking workers understand, exposed
 people face liver disease and other illnesses at remarkably high rates. African
 Americans die of asthma at high rates, and black steelworkers  who have worked
 on coke ovens for decades die of lung cancer. Across the country, minority factory
 workers can tell scientists and government agencies how toxic  chemicals get into
 the body, what to do about it, and why contaminating practices should stop.

       How did the North American Free Trade Agreement (NAFTA) legislation
pass if so many people worry about environmental justice? Greater problems than

Symposium on Health Research and Needs To Ensure Environmental Justice

those that exist in this country occur in Mexico, Guatemala, Puerto Rico, Africa,
and Asia. There is an obligation to solve all those problems, but people die faster
from hunger than from a carcinogen. Corporations have no rights equal to
people's rights. No one has a right to soil the Great Lakes. The labor movement,
the civil rights movement, the women's movement, and the struggle for sover-
eignty of Native-American nations show how to solve some environmental justice
issues. The question is not how do we design a more streamlined incinerator or
write regulations with fewer loopholes. The question is how do we protect human
health? Let everyone on the block know what the lead smelter does to their kids.
You don't need someone from EPA or an  ATSDR toxicologist to answer that. You
need the church at the corner and the elder down the road to explain the problem,
the same way that workers on the floor learned from their unions. Organize and
make changes.

       Superfund should pay for community training; educational information
should be available at local libraries, not from Atlanta or Washington. NIEHS
should establish centers like those at NIOSH and should work to assure that
community organizations needing technical help get it from people who care about
the community.

       To learn the names of government scientists and administrators who care
about community health, call the labor unions; they know who these people are. A
comprehensive public health approach supports science and calls for more infor-
mation, then uses the available information to take action to minimize human
health risks. It's not good science to wait  until all the evidence is in. The energy
and information in this room must be organized to build a political power base and
force Federal and State governments to follow community direction and protect
human health.

       Hon. Carol Browner, EPA Administrator, told the conference  that EPA
has not done what is needed to protect  the people of the United States.

       We should be able to use the laws Congress has passed so everybody in the
country is protected. I can't say we have done that, and that's something I will
work to change. I can only change it if we work together. At the White House
today the President and Vice President will sign an executive order on environ-
mental justice. It took longer than expected so they could  include all agencies with
a role to play, and some did not come to the table easily. The executive order
requires 16 Federal agencies to incorporate environmental justice issues into their
work. No other such executive order has been signed before, but it is only a first

Panel and audience comments

T Martha Blackwell: Nutchafee County, MS,  is 75 percent black. Her area is targeted for
hazardous waste landfills and incinerators. Over 10 years, citizens  have fought to disband four
megadumps in the agricultural county. The State of Mississippi has a capacity-assurance
process based on State law. However, the state currently has no approved capacity-assurance

                                                                      Plenary Sessions
 plan because citizens blocked it. The governor is trying to submit a "cap" plan based on 1988
 EPA guidelines; this plan uses 1989 data from Mississippi that has nothing to do with a real
 cap plan for the State. The governor is trying to put a 200,000-ton landfill in her county and
 this is why the governor tried to submit that cap. Would Browner let the governor submit a
 cap based on 6-year-old guidelines?

 * Ms. Browner: If the law and guidelines require using current statistics, EPA will require it.
 If the guidelines and the law don't require current statistics, EPA should work to change it.

 * Larry Wilson, from Yellow Creek, a small Appalachian community in eastern Kentucky:
 Eight of 10 people in the community have died of cancer since EPA was involved. Cissy Hearst
 died recently, before her 16th birthday, poisoned by drinking water. The community knows the
 Middlesbury Tanning Co. of Delaware poisoned her water. Browner and EPA licensed that
 poisoning. He asked why she and the Middlesbury Tanning Co. weren't charged with mass

 * Ms. Browner: There are times I'm not proud of what EPA may have done. I want to change
 it, that is why I am here. EPA is here to serve people. In the next year Congress may change
 more environmental laws than at any other time in history. Four laws are in Congress that
 could be strengthened to give EPA useful tools for the agency: the Clean Water Act, the
 Drinking Water Act, the Superfund Program, and pesticide  laws. Ms. Browner calls for
 increased, informed public participation in the decisionmaking process.

 * Judy Schreiber, New York State Department of Health: Her department has studied
 indoor air contamination occuring near drycleaning facilities. Such contamination exposes a
 large population of urban children, pregnant women, and lactating mothers to high  levels of
 pollution. Under the Clean Air Act, drycleaners are inadequately regulated. How does EPA
 plan to provide air quality protection?

 * Ms. Browner: The authority given EPA by the Congress relating to indoor air is  not of a
 regulatory nature. She has been sued by the Tobacco Institute of America, which claimed she
 did not have the right to inform the public that smoking is a problem for nonsmokers. EPA is
 working with several members of Congress who introduced  a bill giving EPA greater authority
 to deal with indoor air issues. In studies she has found convincing evidence that indoor air is  a
 serious public health problem.

 T Eliezer Colon, Puerto Rico: The island is polluted. The Caribbean EPA office gives
 information and documents in English, but 75 percent of the population speaks Spanish. The
 island has nine Superfund sites. His town has a landfill used as a toxic waste deposit that was
 submitted as a candidate for the National Priority List in 1986; EPA denied access to
 information, saying that such information is not in the public interest. Yet, people are ill from
 asthma, bronchitis, and skin diseases. Fish die in the lake where the site pumps water. What is
 EPA policy for Puerto Rico?

 v Ms. Browner: EPA should give information in Spanish to people in Puerto Rico. A few
 weeks ago EPA announced it would expand the list of chemicals  on which industry must report
 emissions as required by the Toxic Substances Act. Since 1986, there have been about 300
 chemicals on the list; she just signed a rule adding another 300 to the list. Now the number of
 facilities that must report will be expanded. Superfund information will be made available  in
 Spanish as well as English.

 T Dr. Jose Fernandez: This participant fought the EPA in Louisiana for 13 years, then he
got so frustrated that he joined EPA. He came here to pull together public policy issues,
especially the question of perceived risk. Regarding laws to protect people: where the burden of


Symposium on Health Research and Needs To Ensure Environmental Justice	

proof is on the product manufacturer, there is a way of managing risk. When the product is
waste, the burden is on the people. We don't need more health clinics; we need more law
clinics. It's a matter of shifting the problem of proof from the people to the producer.

T Ms. Browner: Communities are grappling with the question of risk and use of risk
assessment. Some say EPA should limit its detisionmaking to risk analysis. If later cost-benefit
analysis finds the cost of protecting the public health too high, EPA should not provide
protection. That is how some people suggest risk assessment and cost-benefit analysis should
be used. I don't agree.

T Mary Sissen: This participant lived in Alaska from 1979 to 1990 and left to protect her
health and safety. She was on the hydrology task force, attended EPA conferences, and tried
getting assistance from EPA. When she failed to get action on water quality by working
through the State of Alaska, she tried working with the Federal EPA office, but it forced the
issue back to the State. The Exxon Voldez disaster was a small part of the problem. The first
oil discoveries were made in Kenai Peninsula in the 1950s. People have put up with waste
streams, injection wells, recovery and enhancement fluids,  oil depositories, and air pollution.
Her group identified 150 sites for cleanup. Companies have dumped more than 6.5 million
pounds of toxic substances into Cook Inlet. It must stop. The area is ranked first in toxic air
releases in Region X, which includes California, Idaho, Oregon, and Alaska. The water is
contaminated and the air is polluted. The community wonders why EPA has not been there to
help them, despite their many efforts to make contact.

* Chris Bedford, Chair, Communities Concerned about Corporations: Bedford's organization
represents Vietnamese, Hispanic, and Caucasian shrimpers and fishers of the Texas Gulf
Coast. Browner should name the polluters—Exxon, Mobil, Waste Management—in public.
Formosa Plastics has a large plant in Port Comfort, Texas. Browner just allowed a $1.6-billion
expansion that will destroy shrimping, fishing, oyster harvesting, and a way of life on the Gulf
Coast. EPA and the Texas agencies to whom EPA gave responsibility systematically failed to
enforce the law. EPA scientists and staff in the Dallas district office work handin-glove with
the company. He asked Browner to meet with Diane Wilson, a fourth-generation shrimper,
who would travel to Washington to attend a hearing.

* Ms. Browner: Agreed to meet with Ms. Wilson.

* Irma Dey Ande: Her home base is Hood River County,  OR, but she now lives in Umatilla
County. Does Browner intend to protect all workers, including farmworkers?

* Ms. Browner: Yes. The administration asked Congress to pass food safety legislation, the
first time an administration has asked for a comprehensive approach targeting cancer, birth
defects, and effects on the brain and nervous system. Existing  law registering pesticides did not
let the Federal government evaluate these effects. The government should be required to make
a finding that protects public health.

T Ms. Dey Ande: The new law scheduled to go into effect  in April does not include farmers;
their children are being killed by pesticides.

T Ms. Browner: EPA worked on the Farmworker Protection Standards for several years but
could not get the previous administration's approval. The standards will take effect April 1.
Farmworkers will have protection, but these standards are only a first step.

T Buck Jones: This participant is from East St. Louis, which has 50 percent unemployment
and 25 abandoned toxic waste sites. The population has a greater likelihood of dying from
cancer, heart disease, and stroke than most other cities. Near the Lanson Chemical site, 25

                                                                    Plenary Sessions
 people living on one block died of cancer during a 5-year period; 45 percent of the families on
 the street have one or more members with cancer. It is a Superfund site; toxics are being
 removed but remain in the soil and groundwater. EPA says people are dying because they are
 old. We want justice, healing, and wholeness.

 * Ms. Browner: EPA thinks that Superfund is broken and must be fixed. A week ago the
 administration gave Congress comprehensive Superfund reform legislation. One important
 feature is a requirement that every Superfund site have a community group to guide EPA and
 the contractors.

 » Wanda Erwin, Winona,  TX: This participant lives next to Gibraltar Chemical Resources,
 two-tenths of a mile from chemical injection wells that contaminated her water. She wants
 EPA to explain why it gave the company a permit to destroy her land and why it let Gibraltar
 stay in operation after the company broke so many laws. People are suffering and dying in her

 * Faye Bush: This participant lives in Howell County, 50 miles north of Atlanta, GA. The
 county is divided by a street. Wealthy people live on the north side of the street and low-income
 people live on the south side. Sixteen factories in the county dump waste on people every day.
 The soil, air, and water are  contaminated. Twenty people on one street have died; she has
 lupus. Chromium, iron, and other materials were found in the soil in EPA tests. Before the
 tests, people claimed that lifestyle caused the problems. Browner's office should declare a
 moratorium on the dumping.

 * Eatsi Cook, a Native American woman from the Mohawk Nation in New York: EPA has a
 treaty with industry called the PCB Guidance Document. Her people want this treaty
 abrogated. It is a coverup of the Superfund site directly adjacent to Mohawk lands. Her people
 are insulted at being called  the "typical industrial site," when the waters and lands where the
 pollution will sit for years is land where their children swim and her people fish. How can we
 break the coverup so that the tribe will be respected?

 T John Banalee, Big Mound, AZ: This participant gave Browner a formal submission and
 challenged EPA to be accountable on behalf of all people of color.

 * Phyllis Sikorski, Troy, MI: The NCI and other health-agencies .should Joe represented at
 future conferences. She is a member of Parents of Cancer Plus. Her son has cancer. She wants
 to know whether she lives in an area prone to cancer or other diseases. Questions about cancer,
 birth defects, and other diseases should be added to the census in 2000.

 r Ms. Browner: She wants to change problems that cause suffering. Many do not trust the
 EPA. Hold me accountable for how EPA responds to the needs of the people and demand that
 EPA incorporate their needs into every action. Keep up your outrage and anger, but know that
 EPA wants to work with you to solve these problems.
Lunch Address:  Native American View

       Gail Small of Native Action told how in the 1970s the Cheyenne learned
that the tribe's Federal trustee, the Bureau of Indian Affairs, leased more than
half their reservation to coal companies for strip mining. Cheyenne coal was sold
for 17 cents a ton, and no environmental safeguards were written into Federal
leases. She was among a small group of Cheyenne sent to the Navajo Coal Mine
and then to Wyoming coal fields. She was one of 20 high-school-age Cheyenne

Symposium on Health Research and Needs To Ensure Environmental Justice

youth who had their pictures taken inside a coal shovel. At age 21, the only one of
her tribe with a college degree, she sat on a tribal board charged with voiding the
coal leases. A young lawyer helped the tribe sue the Federal trustee and the coal
companies. After 15 years, the tribe convinced Congress to void the leases. How-
ever, the battle is endless, and Cheyenne coal is more valuable than ever.

       With few allies, the Cheyenne fight on many fronts. As the strip mines
came closer, Cheyenne leaders decided to protect their air. In 1977 they redesig-
nated the reservation's air quality as Class 1, pursuant to the Clean Air Act's
significant-deterioration amendment. Implementing and enforcing the standards
was a bureaucratic nightmare. It took 10 years for EPA to acknowledge the
Cheyenne as a government with the right to establish an air-quality plan that
should have triggered funding and enforcement authority. Almost 20 years later,
the tribe continues to fight for air quality. With little money, the tribe was forced
to go to the coal companies for a settlement that would provide funds for air-
monitoring stations on the reservation. This is institutional racism by EPA. Some
tribes are drafting their own laws to assert tribal self-government. Some have
established environmental agencies.

       Beset by problems from gold, coal, and uranium mines and nuclear waste,
tribes and their homelands are under siege. They need the help of scientists to
gather data and establish tribal regulatory agencies. Tribal representatives want
economic development options and jobs and oppose economic "blackmail" that
would deny them that opportunity. Energy companies, government agencies, and
speculators have learned to manipulate the economic poverty of the reservations'
natural resources. Conditions compare to the country's worst Superfund site:
There are not enough allies or money to rectify the situation. Tribal environ-
mental laws and courts must be strengthened. EPA funding should go directly to
the tribes, instead of to intermediary organizations that say they provide technical
assistance, yet do not deliver for months.

       Richard Moore, Coordinator of the SWNEEJ, noted that the executive
order seems to be a positive step, but environmental democracy is a bottom-up
process. The network wants full participation by its members in anything affect-
ing its members. Because its  members did not participate in framing the executive
order, the SWNEEJ does not endorse it. I propose more discussion about dissatis-
faction with the core groups' input. I want to leave  the meeting with a set of
recommendations and carry out the recommendations in communities at home. I
call for 20 minutes of grassroots suggestions on moving forward in the core group
Audience comments

T Janice O'Neill, Flint Genessee United for Action, Justice and Environmental Safety: If
there is a finding of environmental racism and the EPA Office of the General Counsel is
involved, there might be duplicity. This issue deserves consideration.

                                                                     Plenary Sessions
 * Vervet Tilden of the Edgewater people: Children herd sheep in fields near open mine pits,
 tons of coal are strip-mined, and bones of Native American ancestors are crushed along with
 coal. A planned uranium mine will use in situ leaching with water below it. Several communi-
 ties will be affected. He asked attendees to honor Native American spiritual values and
 recommend developing a way to ensure that treaties are recognized and enforced.

 * Vina Colley, a worker from a bomb factory who has suffered environmental contamination:
 This participant is from an all-white Appalachian community that ships radioactive waste to
 landfills around the country. She has DOE records from Oak Ridge, TN, about experimental
 use of radioactive material in humans by the old Atomic Energy Commission, guidelines for
 uranium experiments on humans, and a description of experiments on animals and humans
 with polonium, uranium, plutonium, and lead. If her union had not given the information to
 the community, many would not be alive today.

 * A woman from Albuquerque, NM: There are 12 Superfund sites in New Mexico and she
 lives in an Albuquerque community where one is located. Decisions are made without includ-
 ing the community.  Seventy percent of billboards in her community represent other polluters,
 including tobacco and alcohol.

 * Rev. R.T. Connelly: This participant represents six organizations in west Dallas concerned
 about lead pollution. He came to this meeting for information and support. His community's
 problem is with the city of Dallas, not EPA, which had announced in 1988 that west Dallas was
 polluted with lead. The city denied the charge, and EPA said nothing further. He appealed to
 the sincerity and integrity of public employees to do the right thing. His fight against lead
 pollution began in 1969. In 1993, EPA recognized west Dallas as a Superfund site; there was
 enough lead there to fill three Dallas Cowboys' stadiums.

 T Kim Rettberg, Earth Vision Productions, San Diego, a nonprofit, womanowned organiza-
 tion: The company is doing a six-part documentary on the environmental justice movement. If
 participants are willing to help the project, Poster 74 outlines the six parts. The focus is on
Afternoon Plenary Session:  Challenges to Conducting
Meaningful  Health Research

Panel and audience comments  (Note:  The tape recording does not
include any earlier presentations.)

* Susan Clarke, Environmental Health Advocacy League, Concord, MA: Ethnic minorities,
by occupation and geographical location, are a sensitive population, but children, women, the
elderly, and the previously ill are more sensitive to toxic exposures. Chemically injured people
who respond acutely to chemicals are not represented here. The conference should address the
neurotoxic effects of common products such as cosmetic chemicals and synthetic cleaning
chemicals. Experimental mice exposed to some products have had seizures and died. This
result indicates human brains are being damaged. Consumers should use alternative products.

T Debra Hasan, Savannah, GA: This participant lives 90 miles from the Savannah River site
of a nuclear bomb factory. A study of accidental and intentional releases of radioactive iodine
and strontium from the 1950s will not include people of color. For 2 years, scientists will try to
trace radioactive  releases, but exposed community members may not even be included in the

Symposium on Health Research and Needs To Ensure Environmental Justice

study. Government scientists have declined to accept the connection between exposure to this
radioactivity and cancer deaths. Her community seeks assistance.

 T "Nina": This participant sought assurance from conference sponsors that community
people, like her group from the South Bronx, will have a place at the table. She hopes that core
groups will include people from NIEHS and will cover the many types of pollution experienced
in the South Bronx.

 v A New Zealand woman affiliatec with the Children's Rights Project: Indigenous .  - oles
themselves have solutions; governme -^ officials and agencies need to listen to them.

 T Audience member: A structure should be created at this meeting to allow indigenous
people (not just agency officials) to contribute to the meeting. Community-based problems
should be at the center of core-group discussions, and scientists and government agencies
should be asked to respond.

 * Marty Sonenfeld, a political organizer from New York City and cofounder of Innovative
Empowerment Strategies: Dispense with the next morning session to allow core groups to
meet from 9 a.m. to lunchtime. In planning future conferences, organizers should choose a site
where owners respect the workers' right to organize. Instead of investing so much money in
beautiful core-group name tags, organizers should provide language-translation technology.

 T Hispanic woman, Madeira, CA (This participant spoke in Spanish but had a translator):
She works in a packing house near an area where chemicals are added to the shipped fruit.
One day a strong odor came from an oven used in the chemical process, and many women
workers fell to the floor and lost consciousness. She was among those poisoned; even now she
doesn't feel well and has stomach problems. The packing house of Vesoria Farms is based in
 San Francisco and pays workers $5 an hour. But in Madeira, where she works, the firm pays
 $4.25. Inspectors need to monitor the chemicals area, bathroom facilities, and medications
given to workers. The day of the poisoning, many workers became ill from medication they
received—aspirin that had expired 6 or 7 years earlier.

 T Audience member Jean Simmons: This participant described herself as a victim of high
technology and urged that chemical companies be made to comply with standards of safety and
to protect their workers.
 Informal Press Conference

Dr. Bunyan Bryant invited the press to the stage and said that this conference is
now more like a people's conference because this session is more participatory.
Community members ready to be interviewed were invited to the stage.

Dr. Devra Davis, Senior Advisor to Dr. Philip Lee, in the Public Health Service
(PHS): The Federal government is willing to sit at the table with community
members. There is a history to be overcome but the process has begun. Inequali-
ties faced in public health have been well characterized for many years. Diabetes is
twice as common among Hispanics as it is among whites. Blacks are more often
diagnosed in advanced stages of cancer than are whites. These differences indict
the health care delivery system. Republicans in Congress say we should let things
go as they are. But we must make sure our children get better health care than

                                                            Plenary Sessions
 many of us have had, and we must determine the next steps to achieve environ-
 mental justice.

 Vicki Reese, a reporter with "Environment Week," Washington DC, said that
 she'd probably written more about environmental justice than anyone else in
 Washington, but has been criticized for not talking enough to Washington

 Lee Sprague of San Francisco, CA, stated that the most fundamental human
 right is the right to a clean environment. We must learn how to live so we don't
 need toxic waste dumps. We must change the way we raise our children and the
 infrastructure of our economy and lives. Territorial lands can't be seen as sites for
 extracting minerals without consent of indigenous people, who have the wisdom to
 make changes but are sometimes unheard.

 Carletta Tilousi of the Havasupai Nation in Arizona stated that Native Ameri-
 cans are deeply affected by industrial corporations that came into homelands,
 exploited natural resources, and endangered the native peoples' health. Six
 hundred tribal members live at the bottom of the Grand Canyon. Their main
 source of water will be contaminated by Energy Fuels Nuclear and Union Pacific.
 As uranium seeps into the water, radiation will contaminate water for the millions
 who live downstream. The National Forest Service and National Parks supported
 uranium development on the Colorado plateau. There are 90,000 uranium mine
 claims in and around the Grand Canyon area. Mines were developed near a native
 sacred site. Freedom of religion does not apply to Native Americans. We demand
 that EPA exert pressure to prevent issuing aquifer and groundwater permits to
 mining companies and industrial corporations; that EPA give information, funds,
 and education to tribal communities on programs provided by EPA laws; that EPA
 fund Native Americans to conduct their own health studies, support victims, and
 seek damages for industrial contamination; and that the Indian Health Service,
 the Bureau of Indian Affairs, and EPA be held responsible for this damage.

 A woman from the Hawaiian Islands and Pacific Ocean area of Micronesia and
 representing the coordinator for the United Nations Convention for Children's
 Rights stated that her group demands the United States follow the convention for
 children's rights developed in Geneva. She asked all attendees to sign her petition
 to the U.S. government.
February 12:  Morning Plenary Session

Opening Addresses

      Sam Winder of the National Tribal Environmental Council (NTEC)
declared that the Federal government has not looked after the interests of Native
Americans for the last 180 years. Its main goal in leasing native lands was to
confiscate land and make money. Native American land has been poisoned, and
people have been poisoned. For example, DOE abandoned more than 1,000


Symposium on Health Research and Needs To Ensure Environmental Justice	

uranium mines on Navajo reservations, with processing plants and mountains of
hazardous waste that emit low-level radiation close to people's hogans. Some
Navajo people who used leftover mining materials to build homes have diseases
associated with continuous exposure to low-level radiation. The NTEC was created
to empower tribes and give access to information they need to correct these
problems and heal themselves. If Indians are not given a place at the table, they
will challenge any plans that are developed, and government efforts will be

       Dr. David Satcher, Director of CDC and Administrator of ATSDR,
described how CDC is affiliated with NIOSH, NCEH, the National Center for
Injury Prevention and Control, the National Center for Chronic Disease Preven-
tion and Promotion, the National Center for Infectious Diseases, and the National
Center for Health Statistics (NCHS). All of these agencies deal with issues central
to environmental degradation and should target their resources in that direction.
It will be both a burden and an opportunity to work on these problems.

       Pam Tau Lee of the University of California at Berkeley said that al-
though a principle of environmental justice is to affirm the right of workers to
safe, healthy work environments, research that targets environmental racism in
the workplace is past due, and people in the environmental justice movement have
not done enough to deal with problems of workers, particularly workers of color.
People in the movement should rethink their approach because workers of color
are nearly twice as likely to be injured or taken ill in the workplace as are white
workers, and the workplace is usually the setting for environmental degradation
and destruction. Noting that representatives from the Occupational Safety and
Health Administration (OSHA) were conspicuously absent, she called for OSHA
reform. More research on the health of Latino, Native American, Asian, and
African-American workers is needed, particularly on exposure to multiple hazard-
ous substances  and on synergistic effects of toxins. The government should not
wait for research results when there is evidence of toxicity but should step in
immediately to  protect workers. African-American workers in poultry plants are
crippled; Asian  women working in electronics plants have miscarriages; children
of fieldworkers  are born with birth defects; and other workers are poisoned by
radiation. Cleanup of toxic sites is a growing industry, but its jobs must be safe
and open to people of color, and workers must receive proper training and protec-
tion, stable income, and union membership. People in the environmental justice
movement need links to leaders in government agencies so that they know whom
they can talk to and how to reach them directly. Government and universities
should also stand against environmental racism.

      Thomas Crumbly, Assistant Secretary for DOE Environmental Restora-
tion and Waste  Management, advised that the Clinton administration is serious
about implementing a justice-based environmental policy. Under the current
administration, DOE's vision is to transform how government relates to people.
This process begins with the acknowledgment that DOE has made serious errors
and the recognition that the central issue is to challenge the  idea that good policy
is made in Washington by people who are white, male, and over 40, with similar

                                                              Plenary Sessions
 last names and educational degrees. Good policy can be made at the local level by
 the people involved in the problem.

       DOE's obligations to Indian nations are as follows:

       1.     To broaden and deepen grants to Indian communities adjacent to
             hazardous sites. This effort will include providing the funding, in a
             timely fashion, for the technical expertise necessary for Indians to
             participate knowledgeably in the regulatory process.

       2.     To begin immediately the process of including all Indian nations in
             all regulatory negotiations, so that they may be active participants
             instead of bystanders. He promised that all future negotiations will
             include formal discussions with the Indian nations.

 Whenever a State or Federal agency that is involved with DOE in environmental
 restoration agrees to do so, DOE will raise the priority of restoring sites that
 impinge on tribal holy places, burial grounds, and other areas of importance to
 Indian nations. Furthermore, DOE will change how it administers its $18 billion
 worth of contracts by reforming minority contracting in the environmental
 area—increasing minority contracting by 100 percent in each of the next 2 years.
 Working with unions, DOE will ensure that by the end of Clinton's term, workers
 on reservations will not be exposed to unsafe conditions.

       DOE will also establish priorities for sites that affect people of color. When
 land that has been restored is ready to be transferred, DOE will give priority
 consideration to what the Indian communities near that land want to do with it.
 Even in areas that present major technological and practical obstacles to cleanup
 efforts, DOE will require restoration to  a level  that the ancestors of Native
 Americans would approve. It has been a struggle to get to this point, but DOE is
 taking small steps toward change. Symposium participants should turn away their
 anger at past administrations and work with this administration, which will make
 no more empty promises regarding the environment.

       Connie Tucker, Coordinator of the Southern Organizing Committee for
 Economic and Social Justice, announced that it is time to release the old guard in
 government agencies and let in new voices so agencies better represent those they
 serve. A wholesale change is needed in conferences and other environmental
justice activities to include community representatives. The chief complaint about
 including community workers is that they become too emotional over environ-
 mental justice issues. It should be recognized that they are emotional because they
 are sick or dying. While scientists and government workers may not want to be
 around strong emotions, they need more emotion to solve these problems.

       Participants  must not leave the symposium without raising the issue that
 EPA's regional office tried to suppress the Chattanooga study, which demon-
 strated that high levels of toxic chemicals are being emitted in densely populated
 communities of nonwhite, uneducated poor people. EPA officials also curtailed the


Symposium on Health Research and Needs To Ensure Environmental Justice

Chattanooga researchers' attempt to link the chemicals with a particular disease,
claiming lifestyle was to blame for the disease, or that it is impossible to determine
causal relationship.
 Panel  and audience comments

 T A South Carolina physician: He noted many cases of cancer, including clusters of cases,
 in areas that are obviously affected by toxic waste. But statistics are so poorly kept that it is
 impossible to establish a link between adverse health effects and toxic exposure. He asked
 Satcher whether CDC will work with the Bureau to improve recordkeeping so links between
 cancer and particular locations or industries can be established.

 * Mr. Crumbly: DOE is committed to involving African Americans as well as Native
 Americans. The agency is at the forefront of changing the way citizens are involved in
 government, particularly in cases such as the Savannah River nuclear site. DOE is moving
 away from the frankly secretive model it had under past administrations toward one that
 regularly involves citizens. Communities must have the ability to choose their own experts so
 they can come to the table with the same degree of technical ability that the State government
 has at its disposal.

 T Audience member: This participant grew up in a radioactive fallout zone of Rocky Flats
 and has buried many friends and neighbors who died of leukemia and brain cancer. She and
 members of her community are concerned about radiation containment during cleanup
 activities in Rocky Flats, particularly because of recently reported plutonium spills there. She
 asked for Grumbly's assurance that cleanup efforts will not make a bigger mess than the one
 that already exists, and that local communities will be consulted on cleanup efforts.

 * Mr. Crumbly: DOE must respond to past injustices as it pursues cleanup efforts. Officials
 in the Treasury and Justice departments expressed concern over making such an announce-
 ment, but the administration will stand by it. There must be no further radiation releases
 during the cleanup process. Occupational safety and health will be critical for the workers who
 tear down these facilities, some of which are as large as the State of Rhode Island. Participa-
 tion of Colorado citizens must increase.- Community-members impaneled to-work with the
 government typically are upper-middle-class white males. Although Colorado chooses its own
 participants, he will work with the State to diversify their input to DOE.

 T A worker in an Ohio nuclear facility: She lost her job and medical benefits after
 becoming ill from radiation contamination and complaining about safety issues. At her
 workplace, more than 300 people are sick or dying. Workers don't need more research about
 contamination; they need immediate medical care and compensation for illnesses.

 T Audience member: As DOE's Native American policy is implemented, Grumbly must get
 input from elected tribal officials and from community members. These members are frustrat-
 ed when Federal staffers listen only to tribal officials.

 T Mr. Grumbly: He hopes all tribal members get educated about building facilities on their
 lands because some Indian nations have requested that facilities be located on their land to
 bring economic benefit to the community. Nuclear power can't be considered good for society
until we deal with  nuclear waste.

                                                               Plenary Sessions
 February 12:  Lunch Address

       Dr. Beverly Wright of Xavier University Center for Environmental
 Programs spoke about the distrust of government agencies caused by govern-
 ments' ineffective response to environmental problems. There is a pervasive
 perception that the government acts in the interests of polluting industries and
 that government staffers are incompetent in dealing with chemical risk issues and
 insufficiently skilled to interact with citizens. Furthermore, citizens believe
 government officials have mismanaged regulatory programs, made questionable
 decisions, lied, and made errors. The government must develop a mechanism to
 address community grievances, possibly based on a model program for research at
 Wright's  institution, that embraces science and the community. This equal
 partnership—called "communiversity"—eliminates academicians' ability to use
 communities as guinea pigs in research. Communities are leery of universities and
 skeptical about whether they will act on behalf of citizens. But when sensitive
 faculty members and capable scientists and administrators see their mission as
 serving the community, and when many students and faculty members live in the
 community, a working partnership can develop. Communiversity was hard to
 develop: When input from community members altered the original plan, profes-
 sors found it hard to have less educated people dictate to them, especially about
 research. It was also hard to get the academic community to agree that funding for
 community groups should equal funding for university participants. But only
 when funding is equal can authority be equal.

       To date, communiversity has received accolades but no funding other than
 an EPA grant that supported one project but not the concept. Xavier University
 has resources that would be ideal for environmental health problems and it
 includes participation by toxicologists, chemists, and epidemiologists. When a
 community has such resources and when a university responds to the commun-
 ity's research needs, the community can become a cleaner and safer place. Sym-
 posium participants should pressure universities to do research that communities
 truly need.
Audience comments

T A Native-American man: In the 1980s, a case involving a polychlorinated biphenyl (PCB)
landfill in North Carolina brought attention to the issue of environmental racism, which
intensified with publication of the study, Toxic Waste and Race. Environmental groups have
burgeoned in minority communities; people in the environmental justice movement could
never have imagined then that this symposium would be convened and an executive order on
environmental justice would be signed.

T An African-American environmental sociologist: Justice often involves getting skilled
and trained individuals in the pipeline so they eventually will be able to work against injustice.
African Americans who study the sciences must remember that their roots are in the commun-
ity and they should return to serve their community after they have been trained. At the end
of the symposium, recommendations, accountability sessions, and monitoring mechanisms will

 Symposium on Health Research and Needs To Ensure Environmental Justice
 be in place—tools to make government, institutions, and communities work together against
 environmental racism.

 T Audience member: As the environmental justice movement gained popularity, a range of
 people and groups has tried to start environmental justice projects without understanding the
 issues. They don't recognize how issues of race, gender, and culture affect the staffing of their
 organizations. Attention to the makeup of organizations is as much a part of environmental
 justice as identifying toxic substances. Decisionmaking practices are based on how institutions
 are constructed. To make sure that structural changes called for by the environmental justice
 movement are accomplished, barriers to equality must be overcome in  each organization.
 Environmental justice activists are different colors, have different cultures, and are from
 different regions. Every time they have a meeting they must have representation from Asians,
 Native Americans, African Americans, Latinos, and women.

 T Audience member: This participant represented the Northeast Environmental Justice
 Network. After a 27-year legal battle with the city of New York, a community in Harlem
 received a $l-million court settlement. There are many indigenous people in the northeastern
 regions of the United States, particularly New England.

 T Audience member: Asians are an invisible minority because other ethnic groups consider
 Asians model Americans who have no problems. Asians are culturally diverse—Chinese,
 Japanese, Korean, Vietnamese, Laotian, Cambodian, and Pacific Islanders. Asian farmworkers
 have been exposed to many toxic chemicals. Pacific Islanders have been exposed to herbicides,
 pesticides, and radiation. Asian women working in electronics factories have high rates of
 miscarriage. Symposium participants should look into minority communities to  find "invisible"
 people who have an environmental problem but no organization to help them.

 * Dick Gregory, civil rights activist and comedian: He lived for years near the  University of
 Chicago and raised his children there. After he moved away, many residents developed a form
 of bone cancer. The Manhattan Project, based at the University of Chicago, generated nuclear
 waste that experts didn't know how to dispose of. They ended up "disposing" of it in the
 construction of every new building on campus, exposing people in the area to radiation that
 caused bone cancer. Violence in the black community is not a result of social disintegration. It
 is spurred by science: the need for organs and bodies for scientific research. Passage of seatbelt
 and other traffic-safety measures decreased the number of organs and bodies available to   	
 researchers and doctors. Most black victims of violence are shot in the head, which preserves
 their organ function long enough for harvesting.
 February 12:  Wrap-up

 Summary Recommendations From Core Groups

       Core group sessions were held throughout the conference to develop
 recommendations for action. A separate summary report is available on the core
 group recommendations.

 Core Groups 1-3

       1.     Allow communities to speak for themselves rather than have
              consultants do it. Typically, a community will do initial research
              on its environmental problem, then hand it over to scientists and


                                                           Plenary Sessions
            other experts. When these intermediaries report to government
            agencies, they often don't accurately reflect community concerns.

      2.     Ensure government validation of a community's experience
            with an environmental problem, rather than dismissing
            community reports. The government should work on behalf of
            people, not industry. Any penalties or fines imposed on an industry
            by a regulatory agency should be turned over to affected

      3.     Increase government funding  to communities, fully inform
            communities about available funding, and provide technical assis-
            tance with the application process so communities can more readily
            obtain funding.

      4.     Ensure that researchers must  explain to community mem-
            bers what data they need to study an environmental
            problem, then report their findings to the community in an under-
            standable format.

Core Groups 4-7

      1.     Respond to the urgent need for public education and out-
            reach efforts, so communities can be more involved in their own
            protection. Two possibilities are how-to clinics and in-home clinics
            that teach people about, for example, radon poisoning in their

      2.     Inform the public about the effects of products they use on
            the environment. Products should be priced to reflect their impact
            on the environment.

      3.     Establish an environmental information network indepen-
            dent of government or industry. It should include a telephone
            hotline, a clearinghouse, and computer networking. Government
            agencies should give communities computer hardware and software
            that is user-friendly and connected to data-collection systems that
            are independent of the government and should provide computer
            training to community members.

      4.     Establish legal safeguards so "whistle-blowers"  who report
            violators will not face retribution.

      5.     Increase ethnic and cultural diversity on the staffs of gov-
            ernment agencies, particularly in positions that require contact
            with affected communities. Too often, agencies hire white males to
            investigate situations in which most complainants are black women.

Symposium on Health Research and Needs To Ensure Environmental Justice	^	

            Because these groups have divergent sensibilities, misunderstanding

      6.    Honor whistle-blowers and protect their legal rights.

      7.    Ensure that consumers have the right to sue the government
            when they are affected by environmental pollution.

      8.    Subject corporations (and executive officers) who
            knowingly violate regulations to criminal penalties. Presi-
            dent Clinton's "three strikes and you're out" policy with criminals
            should apply to corporations: Imprisonment should be mandatory
            for executives who head companies that habitually violate environ-
            mental regulations.

      9.    In legal cases  concerning chemical toxicity, shift the burden
            of proof so chemicals are considered toxic until proven safe.

[Note: No recommendations were listed as deriving from Core Group 8.]

Core Groups 9-11

      1.    Eliminate unsafe pesticides used in the United States and
            exported abroad.

      2.    Increase action to reduce farmworkers* exposure to known
            toxins, such as lead in paint and soil.

      3.    Increase research on asthma, particularly among people of color,
            and take more action against known causes of asthma.

      4.    Generate a written report of symposium proceedings.

      5.    Agencies sponsoring the symposium should plan the next

      6.    Community members need financial support to have real
            participation in the next symposium. Agencies must provide travel
            and lodging costs.

      7.    Ensure that researchers recognize local expertise in
            environmental health matters and that any government
            intervention be done in partnership with the community. In
            researching an environmental problem, the burden of proof should
            be removed from victims and placed on the hazardous materials

                                                            Plenary Sessions
      8.    Enact, strengthen, or enforce legislation that gives everyone
            equal protection against environmental degradation. Civil
            and criminal penalties against violators should be increased, and
            existing legislation (including the Clean Air Act, Clean Water Act,
            Superfund, and pesticide legislation) should be strengthened. A
            Superrund should be created to provide job training for workers who
            lose their jobs because of environmental technologies or innovations.

Core Groups  12-15

      1.    Repeal the Werner Amendment, which guarantees sovereign
            immunity. The amendment makes it impossible for citizens to sue
            the government; repeal would give them that right.

      2.    Make all communication materials in the environmental
            justice arena multilingual so  all linguistic groups in the popula-
            tion can understand them. Similarly, all communication materials
            must use simple, clear language instead of technical jargon.

      3.    Revamp the funding process.

            v Eliminate government subsidy of corporations and redirect the
            money to community justice groups. Generate new sources of
            funding by making polluters pay  fines; direct that money to local
            justice groups. This move switches control of funding from govern-
            ment and industry to citizens.

            T Eliminate provisions for local justice groups to receive reimburse-
            ment for their expenses. They need the funding up front.

            T Simplify procedures for obtaining grants so community groups can
            apply more easily for them. Let community groups set up general
            criteria for awarding grants, and  let community committees oversee
            funding and research. Draft legislation and regulations that require
            community-based  organizations to be included in the funding

      4.    Mandate institutional change. Overhaul personnel, hiring, and
            evaluation procedures in government agencies and academic institu-
            tions so that staff  and leadership reflect the cultural diversity of the
            community being served. Enforce laws that require such change.

      5.    Ensure that recommendations made at this symposium are
            enacted. Report accomplishments of the symposium to the public
            and hold a followup conference.

      6.    Insist  on full disclosure of all relevant data and let commun-
            ities use data on their own behalf. Communities often are not given

Symposium on Health Research and Needs To Ensure Environmental Justice	

            access to data. Once they have access, they are not allowed to use the
            data for their own purposes.

Core Group 16

       1.    Establish an interagency forum to address environmental
            justice issues to make certain that involved agencies are aware of
            their roles and will not duplicate efforts.

       2.    Ensure that the interagency group is actively involved in
            affected communities, educating residents and allowing them to
            set the agenda for further action.

       3.    Ensure followup to this symposium, so the report of its results
            is not shelved and forgotten.

       4.    Encourage agency employees to stand together with com-
            munity workers to get things done. Many agency employees
            seem to be good people with a lot of heart, who say their hands are
            tied until citizens get their legislators to enact laws that allow
            agency people to act.

Core Group 17

       1.    When addressing any case of environmental injustice, in-
            clude community groups from the  outset, along with local
            health and environmental agencies and State and Federal groups
            (such as Congress and the Departments of Justice, HUD, Labor, and
            the Interior).

       2.    Make all relevant information available to affected com-
            munities in their own languages; include videotapes that illiter-
            ate citizens can understand.

       3.    Provide money to include professionals in the communities,
            such as local toxicologists, in environmental justice efforts; they will
            ensure that community members aren't "snowed under" with
            technical jargon from government and industry representatives.

      4.    Urge symposium organizers to obtain a signed executive
            order so all participants return to their communities with some-
            thing solid to show for this conference and a starting point for
            further work.

      An unidentified speaker from the core group said that risk assessment is
a concern to indigenous people, who believe there are no acceptable levels of
environmental  contamination. A clean environment is the fundamental right of
Native Americans, who have a long history of resource management based on

                                                              Plenary Sessions
 detailed understanding of long-range impacts on the environment. The use of risk
 assessment as a tool and policy allows activities that damage the land, animals,
 and people. Indigenous people assert the right to reject levels of contamination
 that industrial societies consider acceptable. The position of indigenous peoples,
 which must be considered in environmental studies conducted in their territories,
 is as follows:

       1.     Precedence must be given to traditional considerations over eco-
             nomic considerations in determining the future of Native American

       2.     Educational programs in indigenous communities should reflect
             traditional values.

       3.     Tribal representatives and representatives of Federal agencies
             should be trained in and sensitized to traditional values.

       4.     Funding should be adequate to ensure implementation of traditional

       5.     Indigenous peoples must be equally involved in decisions, and health
             research must consider all parameters identified as important by
             indigenous people.

       6.     A permanent ombudsman position should be established in Federal
             agencies that interact with indigenous people and should include
             oversight authority on programs affecting indigenous communities.

       7.     An electronic information network must be established, ensuring
             that indigenous people have the opportunity to identify problems
             and initiate proposals.

       Another unidentified speaker from a core group told how that group
 dealt with a Maori woman from New Zealand who wanted to bring the plight of
 her community to the attention of the symposium attendees. She noted that 50
 years ago, the New Zealand government borrowed the community's island to
 explode bombs. The people were relocated, but pregnant women now are giving
 birth to tissue masses, not babies. In response to her description, a member of the
 core group who is a toxicologist said it seemed that this population had experi-
 enced permanent, irreversible genetic damage. The woman was seeking help for
 her community: What could scientists and Federal government officials offer her?
 Would her civilization survive? Could her community return to the island? Has
 their race been altered? Participants must come up with concrete solutions for
 problems such as this  one. Any information that could be useful to the Maoris
 must be given to them, and if it is classified, it must be declassified so it is accessi-
ble. These people know their own history and their own environment intimately,
and they will prove to  be the most important information source for whoever

Symposium on Health Research and Needs To Ensure Environmental Justice	

proceeds with an ecological risk assessment or epidemiological study of their
reproductive problems.

Core Groups 18-20

       1.    Recognize that people are not a tool for science; science is a
            tool for people. Scientific knowledge has limits. Other  "ways of
            knowing" are as valid as are scientific ways.

       2.    Ensure that research is done in the community, for the
            community, by the community.  No more research should con-
            clude there is no solution to an environmental problem, nor make it
            appear that the government has done something useful about a
            problem when it has not.

       3.    Ensure that the purpose of environmental research is
            explicitly clear to everyone involved from the outset and
            serves the needs of the community instead of the needs of industry
            or government.

       4.    Do not tolerate negative research that is designed to prove that
            there is no environmental problem.

       5.    Ensure that researchers empower the community and involve
            community members, not exploit them.

       6.    Ensure that community members are involved at all stages
            of a research study, including defining the problem, designing the
            research, gathering the data, analyzing the findings, and publishing
            the results.

       7.    Disseminate findings so that people are aware of and can use the

       8.    Encourage  partnerships among government agencies,
            research institutions, and community members. These rela-
            tionships are essential and must be characterized by mutual respect
            and recognition of the different "ways of knowing."

      A final speaker declared that the scientific and environmental justice
communities must jointly develop a new model for environmental research that
includes affected communities as active participants in the research. Citizens must
be involved in planning and conducting studies, disseminating results, generating
hypotheses, discovering new problems, interpreting results, and ensuring that
study results are translated into appropriate public health action whenever
possible. New epidemiologic models and methodologies must be developed to
analyze smaller population groups, cluster phenomena, low-dose exposures, and
exposures to multiple toxins. Recruiting, advancing, and retaining people of color

                                                            Plenary Sessions
and members of affected communities must be a high priority. Environmental
research has included the regular practice of omitting, suppressing, and destroying
information critical to environmental health. Burdens of scientific proof ignore the
norms of most communities that need environmental research. New molecular
technologies will have an increasing impact on risk assessment and policy formu-
lation. The environmental justice movement must target the development of these
tools to serve affected communities.
February 12:  Closing Session

      Dr. Kenneth Olden, Director of NIEHS, iterated that NIEHS is commit-
ted to environmental justice. The rage and frustration expressed by many partici-
pants were long overdue. He expects communities to inform government agencies,
particularly NIEHS, about their needs so agencies can act on them.

      Dr. Janet Phoenix, Director of the National Safety Council Lead Clear-
inghouse, noted that the process leading to the symposium took more than a year
and was never easy. It was hard for the two camps to establish mutual trust and to
work together, but the symposium forced action and a commitment to take
environmental justice seriously. It was no accident that the executive order was
signed this week.

      Participants must return to their communities and make the recommenda-
tions a reality, communicating the recommendations to Federal agencies (which
must change their approach to community members), informing fellow citizens,
and continuing to build alliances across ethnic barriers. In addition, people of color
who are scientists or Federal employees have contributions to make and must be

     Press Conference

                                                        Central Issues Sessions

                              February 10, 1994

 Central Issues Plenary 1: Respiratory Diseases

       (The moderator was Dr. Bailus Walker, Dean of the College of Public
 Health, University of Oklahoma Health Sciences Center in Oklahoma City.)

       Dr. Ken Sexton, Director of the EPA's Office of Health Research,
 observed how he and his coauthors in Air Pollution Health Risk: Do Class and
 Race Matter? defined environmental equity and justice as a commitment to
 adequate protection for everyone. Environmental health problems occur through
 a sequence of events that begins with a pollution source, its contact with people
 (exposure), and adverse health effects. Exposure assessment means (1) trying to
 understand what exposures people experience and how they occur, and (2) identi-
 fying what dose-response relationships  occur once a person is exposed. Given the
 amount  of contaminant that entered the body, what are its potential adverse
 effects? These measures characterize risk assessment, which pinpoints groups
 potentially at greatest risk. Given exposure to a specific  chemical, a person or
 group or population could be more susceptible or potentially at greater risk if
 exposed  further, or both.

       In the U.S. population, subgroups are defined by  geography, socio-
 economic status, race, or ethnicity. Even in the absence  of scientific documen-
 tation to prove differential exposure, specific subpopulations have different
 exposures and perhaps even different susceptibilities than the general popula-
 tion. Scientists must understand subgroups, particularly those that are most
 exposed. In one study, the U.S.  population was grouped  according to exposure to
 carbon monoxide. Everyone with higher exposure than EPA's carbon monoxide
 8-hour standard is potentially at risk for health effects, so some racial and ethnic
 groups will be harmed disproportionately if their city has urban air problems.

       Over 10 to 15 years, exposure to air pollution often occurs indoors,
whether  the source is an outdoor or indoor contaminant. Some subgroups are
exposed to  higher levels of indoor and outdoor air pollution. The best data
showing  environmental disparities are from an ATSDR study on children's blood
lead levels. As family incomes rose, lead levels in children's blood declined for

Symposium on Health Research and Needs To Ensure Environmental Justice

African Americans and white Americans.  However, even at higher income levels,
a disparity between white and African-American children occurs, with the latter
having higher lead levels. The most likely explanation is a combination of
exposures to peeling lead-based paint, lead-filled dust, and the hand-to-mouth
activity of children playing on the floor. Wherever researchers look, they find a
statistical association between proximity to a major source of pollution and race
and ethnicity.

       Dr. Henry Gong of the University of Southern California School of
Medicine in Los Angeles noted that many factors prevent researchers from
drawing simplistic models concerning increased susceptibility, exposure, or both
for given populations. In performing air pollution research, including animal
experiments, human experiments, and epidemiological studies, scientists have
identified factors that affect lung function after controlled exposure to ozone and
learned that people vary by genetic susceptibility to ozone. But scientists have
not determined whether findings on human subjects in experiments apply to
chronically affected individuals. Furthermore, there is a lack of data on nonwhite
groups, although one EPA study showed that when white and black volunteers
entered an ozone chamber, there was no statistical difference in effect by gender
or race. For the whole group, increased ozone concentration caused reduced lung

       Epidemiological studies—based on  systematic comparisons between
communities, individuals in communities, across points in time,  and combina-
tions of these—seek to identify disease patterns and risk factors, indicate specific
mechanisms, and suggest causality and interventions. Many scientists rely on the
weight of evidence: For example, if many  studies all point to  one tendency, many
give credence to that tendency. A literature review on air pollution health effects
reveals that most studies feature white, middle-income communities, with few
focusing on black, Hispanic, Native American, and Asian groups. Future research
must target racial and ethnic groups and get good information on age, gender,
and socioeconomic status before the relevance of socioeconomic status to effects
of air pollution can be analyzed. This research must involve communities,
scientists, and health care providers, and  it must make a special effort to involve
researchers of color.  The projects must be adequately funded and encourage
inter agency efforts that are critical in a time of limited resources.

       Chris Mathis of the labor community's Watchdog in the Los Angeles
Project asked first how the community can  help identify research needs and
answer basic concerns of who is  exposed to  what, how exposure  can be preven-
ted, and how to intervene. Second, he asked how disseminating  the research can
help create policies on air pollution-linked illness. In Los Angeles County, more
than 5 million people are Latino, black, or Asian Pacific Islander, and more than
half the county is considered at risk for or sensitive to ozone pollution. Periodic-
ally, the Air Quality Management District announces smog alerts, broadcasting
that the  air is harmful to sensitive people, but without defining  "sensitive."
Those potentially affected include children,  the  elderly, people with health
conditions, and those who are HIV-positive. Many people of color who would

                                                         Central Issues Sessions
 qualify as sensitive live in industrialized communities ringed by freeways and
 busy streets. Large corporations produce much pollution and help shape govern-
 ment policies, while ordinary citizens have no say in the products made or the
 industrial processes used to manufacture them.

       The public health crisis resulting from air pollution is a symptom of how
 large companies exert power over people of color. Grassroots movements among
 people of color, low-income people, and working-class people must confront
 corporate power in transportation, industrial, and regulatory policy. Watchdog is
 a microexample of such a movement. The project began by publishing Los
 Angeles' Lethal Air, an examination of scientists' work written for a general
 audience. Education is key to building an informed constituency to fight for
 clean air because the issue is political, not technical. While we need more
 scientific studies, research alone is insufficient, particularly if it neglects environ-
 mentally caused or exacerbated disease. There is an urgent need to bring
 together the best community-based, university-based, and public health scholars,
 practitioners, and activists to compile a body of existing work  and develop new
 socially relevant research. The government  could use its leverage to make
 companies do the right thing, and individuals could press to raise the minimum
 wage, eradicate poverty, support a Superfund for displaced workers, make trade
 with other countries contingent on worker and human rights, and talk to each

       Gerrie Kilburn, a registered nurse  concerned about occupational health
 and safety issues, described two American Lung Association (ALA) community
 education projects.  "Care for Your Air" targets outdoor pollution, and "Working
 Healthy is More Productive" targets workplace pollution. Focusing on a small
 community in greater Los Angeles, both addressed the Latino/Hispanic popula-
 tion that constitutes 40 percent of the region's residents. Care for Your Air tried
 to increase Latino awareness of air quality and its health effects in the commun-
 ity. ALA stressed the importance of car care in reducing emissions after defining
 program objectives by asking community leaders and residents about their needs.
ALA held resident meetings, conducted in Spanish and English, to solicit more
 data. It carried out an in-depth survey  (333 responses were received from 1,360
residents), which showed that 87 percent of respondents owned a vehicle.
Respondents recognized air pollution health risks, were reasonably knowledge-
able about most common health effects and causes of air pollution, and were
receptive to more information. They would be willing to make personal sacrifices
to improve community air quality, including monthly financial contributions. In
the next stage of Care for Your Air, a media campaign will work with Spanish
stations and use a "Reporter's Guide" that  contains air quality reports, con-
sumer tips on reducing smog, discussions of the impact of smog on at-risk
residents, relevant local ordinances and laws on car maintenance, and the
California State Smog Check program. The  project's evaluation component will
monitor Spanish-language print and electronic media.

      "Working Healthy is More Productive" seeks to give supervisors of
Spanish-speaking workers information and educational materials about basic

               '           "                                               33

Symposium on Health Research and Needs To Ensure Environmental Justice	

concepts of worker health and safety. Employers must tell employees what toxins
they work with and how to protect themselves. The project was born when ALA
staff found that only 28 percent of companies interviewed offered education in
Spanish for Hispanic-Latino workers and that workers had little knowledge
about personal health and safety. The Hispanics and Latinos who form the
majority of blue-collar workers in Los Angeles, and who work disproportionately
at high-risk jobs, have few opportunities to get information about health and
safety concerns. ALA developed an instructional video in Spanish and English;
tested it in focus groups; enlisted the cooperation of companies to film the video
in restricted areas; and tested it for accuracy, appropriateness, and understand-
ability.  Forty companies now use the video.

      Dr. Peter Gergen of the National Institute of Allergy and Infectious
Diseases (NIAID) told about the National Cooperative Inner-City Asthma Study
(NCICAS), an asthma study of inner-city children in eight cities that is examin-
ing risk factors and determining prevention strategies, focusing on asthmatic
children ages 4 to 9 who live in census tracts where more than 40 percent of
residents are below the poverty line. Important predictors of asthma morbidity
and mortality are poverty and minority status. Although the environment plays
a large  role, how to intervene optimally remains unclear. NCICAS runs from
March 1991 through February 1996: Phase 1 identifies risk factors and phase 2
proposes and tests interventions to reduce asthma severity and morbidity in
these children, based on phase 1 findings. Phase 1 is currently ending, and phase
2 planning is underway.

      Phase 1 looked at the morbidity experiences of asthmatic children over 1
year of  age, collecting information on sources of care, sensitization to allergens,
passive  smoking exposure, psychosocial background of child and family, the
health care delivery system, adherence to medication, pulmonary function, and
economic costs of asthma. Children were recruited from emergency rooms and
clinics. NCICAS data are not yet formally, analyzed, jexcept for results.from the
pre-phase 1 pilot test using dust samples taken from the children's bedrooms.
Although the house dust mite is an  important allergen for asthma and ubiqui-
tous in  many studies, this study found that only 6 percent of homes had even
light levels of house dust mites, but almost one-third had high levels of cat
allergens, and 20 percent had high levels of cockroach allergens. Pilot test data
also showed a high level of children's secondary exposure to smoke and a lack of
knowledge by families about the effect of smoking on those with asthma. During
the study, the use  of community-based recruiters and clinic members enhanced
community participation. Afternoon, evening, and weekend interviews were
needed.  Researchers found that providing day care  and taxi vouchers to  and from
home made participants more likely to stay involved. Staff used telephone
interviews for 90 percent of followups, with 10 percent conducted in person or by
letter. The project  also provided a toll-free telephone number. Because literacy
was another problem, researchers created a simple  English-Spanish

                                                            Central Issues Sessions
 Panel and audience comments

 * Dr. Gergen: NCICAS researchers, faced with limited money and expensive technology,
 chose what variables to study. NCICAS has started to fill the gap on information about
 outdoor air pollution. The eight NCICAS cities have EPA monitors who collect routine
 pollution data reported in the United States. Now NCICAS is trying to work with EPA to
 collect those data and attach them to the NCICAS morbidity-mortality data to see correla-
 tions and associations. NCICAS researchers will not collect the data themselves.

 * Mr. Mathis: On channels of communication from researchers to people in neighborhoods:
 Science is not neutral. Watchdog comes to  the struggle for clean air and environmental
 justice out of a commitment to social justice. Different agencies regulate different sources of
 pollution. His organization has received boxes of information.

 * Audience member: Regulatory and helping agencies are fragmented. A Latino woman
 living in the South Bronx and working in the garment factory gave birth to a low-birth-
 weight baby while suffering from poor nutrition and breathing neighborhood air. OSHA,
 EPA, the local health department each will study  parts of the larger contamination, but no
 one agency will help the woman. He called for a larger social movement and urged health
 sciences advocacy to help people make the  best choices.

 T Dr. Walker: Certain populations are underrepresented in scientific research, a failing that
 should be addressed. If we want to move forward,  we need funds. Community groups have a
 role in assuring that there will be resources for these projects.
 Central Issues Plenary 2:  Lead  Poisoning

       (The moderator was Janet Phoenix of the National Lead Information

       Dr.  Stephen Thatcher, Acting Director of NCEH at the CDC, explained
 that CDC is a task force member and the primary agency in lead poisoning
 prevention that provides grant money for local and State programs, with NCEH
 giving grants for screening, case management, and education. Of nearly 1.5
 million children screened in 1993, 100,000 had elevated blood lead levels. The
 education programs of NCEH, which include a telephone hotline and conferen-
 ces, are administered in cooperation with other Federal agencies. NCEH also
 conducts epidemiological studies to review program effectiveness, other special
 epidemiologies! studies, and public health surveillance, which includes routine
 collection, analysis, and dissemination of data for program activities. Since
 inception of the Interagency Task Force in December 1993, NCEH has been an
 active partner in the effort, working to develop  coordinated approaches to
implementing the Residential Lead-Based Paint Hazard Reduction Act (Title X)
and environmental justice initiatives.

      Joseph Carra, Deputy Director of EPA's Office of Pollution Prevention
and Toxins, described Title X as providing the infrastructure to tackle problems
generated by lead in the environment, including lead in public and commercial
structures and residences. The Act emphasizes housing-based primary preven-

Symposium on Health Research and Needs To Ensure Environmental Justice	^__

tion activities implemented on the State and local levels. These activities include
ensuring that people engaged in lead-based paint activities are trained and
certified; developing standards for abatement activities; promulgating model
state programs for training and prevention; awarding grants to develop these
programs; establishing and maintaining laboratory standards and accreditation
concerning the measurement of lead in the environment; working with other
agencies to develop an active, up-to-date public education campaign; and
developing regulations that define lead-related hazards. EPA is involved in
research that includes improving the understanding of lead exposure, its sources,
pathways, and biokinetics; developing improved and low-cost technologies for
detecting and measuring lead; identifying those renovation and remodeling
activities that cause the largest lead exposure problems; and developing less
costly methods to reduce children's exposure in homes with lead hazards. EPA is
working on a community-based lead abatement demonstration project supported
by Title X with HUD, DHHS, and the Department of Labor (DDL).

       Steven  Schwartzberg, Director of the Alameda County (CA) Lead
Poisoning Prevention Program, reported that a study conducted in various  sites
across California in 1988-1989 documented the existence of lead poisoning
among youngsters. Of 550 children tested in Oakland, 60 percent had blood lead
levels of more than 10 micrograms per deciliter (jig/dL), the CDC action level. In
response, People United for a Better Oakland (PUEBLO) worked with area
residents, the media, and the health department to find financial support for a
program to alert and help the community. A benefit-assessment district was
created, with four cities assessing fees of $10 per year for 3 years on homes  built
before 1978. Fees underwrote the Lead Poisoning Prevention Program, which
included case management, environmental investigation, community education
and outreach, remediation, and training for local health professionals. Since
some basic issues for preventing and responding to lead poisoning remained
untouched, the Alameda program applied for and received funding from HUD
and CDC to address these issues. It now has an annual budget of $5 million. As
a result of political activity by PUEBLO and similar groups, the State requires
several industries to pay fees so children can be tested for lead poisoning. The
program also develops outreach programs for specific groups.

      Lorraine Granado of the Cross Community Coalition in Colorado told
about a State suit filed in 1983 against a smelting company, the ASARCO
Corporation, for pollution associated with refining near Denver. The community
around the plant wasn't told about the suit or a settlement that gave Colorado
$600,000 to study arsenic, cadmium, and other heavy metal pollution related to
company activities. The money was added to the State's general operating funds.
In 1987, Granado began working to involve the community in the legal process.
The coalition sought to educate local residents about pollution and legal action,
to get funds to  clean up the pollution, and to close the plant. These objectives
pitted a community of fewer than 12,000 people, half of whom were below the
poverty level, against an international chemical refining company with a history
of involvement in chemical pollution lawsuits. Eventually ATSDR funded a  study
of blood lead levels in children that indicated recent lead exposure, but did not

                                                        Central Issues Sessions
 suggest overall body injury. Through door-to-door canvassing, coalition workers
 found that asthma, learning disabilities, and behavioral problems among young
 people in the neighborhood seemed disproportionately high. A complication in
 the issue of determining fair remediation was the coalition's finding that no
 standards existed for acceptable levels of heavy metals in soil or air. Meanwhile,
 the community is still poisoned.

       By using the media and political pressure, the coalition was able to take
 its Comprehensive Environment, Compensation, and Liability Act (CERCLA)
 lawsuit to court, winning after 5V£ years.  Remediation included cleanup of the
 plant site and four blocks around it. A class action suit that the coalition filed for
 the community resulted in the largest award ever made in the State of Colorado
 for community damages. The $40-million award will be used for yard cleanup
 and to compensate community property owners.

       Sandra Roseberry, a New Hampshire parent, told how her attempts to
 purchase a home and live out the American dream turned into an American
 nightmare. The home that the Roseberry family purchased from the Veterans'
 Administration (VA), which repossessed the house from the previous owner,
 turned out to be contaminated with lead paint. Over 2 years, Ms. Roseberry
 had a miscarriage, her dog developed grand mal seizures, and her 3-year-old
 daughter had head and stomach pains. A pediatrician diagnosed the daughter as
 insecure about having a new  sibling, but the daughter was later found to have a
 blood lead level of 35 pg/dL. Her other children also had blood lead levels above
 the CDC action level, and evaluations of paint and dust showed that the house
 was unsafe for children under 6 years old. The family rented a home, was told
 that repairs on their own house would cost $30,000, and was directed by the VA
 to keep paying the mortgage. For 4 years, the family contested the government's
 decision. Then Ms. Roseberry became politically involved. Now she has
 completed training for lead-based paint inspectors sponsored by EPA and works
 to use Title X requirements to improve-New Hampshire lead-poisoning legisla-
 tion. The lead-abatement training course was expensive, often held  at inacces-
 sible locations, and presupposed a technical background that most people taking
 the class didn't have.

      Dr. Lisa Rosenblum of the CDC Childhood Lead Prevention Program
 reported that  CDC provides funds for State and local health departments to
 track and monitor children with high blood lead levels and special services. Lead
 screening and education projects could be linked to other health promotion
programs. Participants in lead-related programs can be made aware of other
health promotion projects, and vice versa. The agency funds local public health
agencies to integrate lead screening and case management services with other
health screening and treatment services for Medicaid-eligible children.  Screening
is part of secondary prevention. CDC also will fund primary prevention that
improves housing stock. Title X was landmark legislation because it set aside
funding to reimburse landlords who remove lead hazards.

Symposium on Health Research and Needs To Ensure Environmental Justice

Panel and audience comments

T Audience members: Those who live near a lead-smelting plant in Dallas, Texas, say
that more testing is not needed, but that funding and advice from the government are
needed to help regain their health, educate their community, and protect future
generations from lead poisoning. People from other communities volunteered similar

T A government  representative: EPA can only provide services authorized by
Congress. Community groups must pressure legislators to change the law so EPA has a
different mandate  and tools. One possible source of funding is Superfund, which might
become a better source if community groups work with Federal legislators while
Congress debates Superfund reauthorization. Keeping apprised of legislation is impor-
tant if community  programs want jobs for people they trained as lead-abatement
workers. Program  directors in the audience trained local  residents to become abatement
workers, but private contractors took the jobs. By tracking and being involved in
legislation, program directors would know which agencies have received funds for grants
and contracts and  would be more competitive with private contractors.

T Government representatives: More training funds will be made available. As part
of the environmental justice initiative in Title X, model programs will be developed that
train workers and  respond to local demands for services.  But model programs will be
established in limited communities and should not be viewed as a major funding source.

T Ms. Granado: People of color are locked out of opportunities to get Federal funds. We
need more affirmative action regulations and better implementation of existing ones.

* Panelists and audience members: Other forms of discrimination against people of
color and low-income  groups that work to promote environmental justice include the

       — At all levels of government, people of color often were given public relations
       positions with no decisionmaking authority.

       — Local residents' knowledge, born of experience  living in contaminated commu-
       nities, often was discounted by agency scientists and administrators.

       — Programs developed to train and educate community members and eliminate
       lead pollution problems were not sensitive to community needs, were not geared
       to the appropriate education  and literacy levels, did not use the most effective
       methods to reach community groups, and often did not address what the
       community diagnosed as problems; nor do they offer  solutions that were appro-
       priate to the community.

       Suggestions offered during discussion to remedy these problems included the

       — Include community groups in decisions on the most effective ways to imple-
       ment  existing government programs.

       — Develop programs that promote community-government partnerships to define
       lead-related problems and shape attempts to resolve them.


                                                           Central Issues Sessions
       — Make available a range of services—including medical, public health, housing,
       and educational programs—to address the spectrum of problems created by
       lead-based paint hazards.

 v Panelists and audience members: These participants discussed screening and
 tracking people with high blood lead levels. One panelist said registries are expensive
 and hard to develop, but an immunization registry being planned might be a model for a
 future lead-poisoning registry.

 * Audience members: A community outreach worker from Los Angeles said lead-
 screening programs in that area were more likely to identify high blood lead levels
 among Hispanics than among African Americans because Hispanics usually obtain
 medical care from neighborhood health clinics,  which conduct  aggressive screening
 programs, while African Americans usually obtain care from county medical facilities,
 which do not screen aggressively. Some physicians don't believe that lead-paint
 poisoning is a serious issue in their localities, or they lack education about the problem.
 As a consequence, they don't  consider lead poisoning as a possible diagnosis and fail to
 support public education programs.

 T Dr. Rosenblum: Screening is part of secondary prevention. CDC will provide funds
 for primary prevention that will improve housing stock. Title X is landmark legislation
 because it sets aside funding to help landlords and homeowners remove lead hazards.
 Central Issues Plenary 3:  Hazardous Waste Problems

       Dr. William Suk, Chief of the Chemical Exposures and Molecular
 Biology Branch, NIEHS, called for a multidisciplinary research approach to
 achieve environmental justice. Studies should determine the additive, synergistic,
 and combined impact of pollutants,  as well as the impact of pollutants acting
 separately. Research data are critically needed on how hazardous waste sub-
 stances change as they migrate through soil, air, and water; enter the food
 chain; and are otherwise ingested or absorbed by people. The NIEHS Superfund
 Basic Research Program is working to address these research needs and other
 problems associated with hazardous substances and hazardous wastes. When
 Congress passed the Superfund Amendments and Reauthorization Act in 1986, it
 mandated that NIEHS establish a university-based grants program to study
 basic research issues related to hazardous waste exposure and remediation. The
 four objectives of the NIEHS Program are to develop (1) methods and tech-
 nologies to detect  hazardous substances; (2) advanced techniques to detect,
 assess, and evaluate the effects on human health of hazardous substances;
 (3) methods to assess risks to human health from hazardous substances; and
 (4) basic biological, chemical, and physical methods to reduce the amount and
 toxicity of hazardous substances.

       Since 1987, the NIEHS Superfund Basic Research Program, a unique
prevention approach that includes research on basic mechanisms,  epidemiological
studies, and developing and applying technologies, has funded 18 projects at
29 institutions, supporting the work of more than 1,200 scientists who are

Symposium on Health Research and Needs To Ensure Environmental Justice	

developing new techniques to assess and reduce hazardous waste exposure.
Studies include research that identified an excessive level of PCBs in the breast
milk of some Native American women and linked it to consumption of fresh-
water fish contaminated with PCBs. Researchers are also validating the use of
noninvasive diagnostic tools to measure bone-lead levels in children and have
already developed and validated the use of steam injection for soil decontam-
ination. Future methodological directions include developing advanced combus-
tion engineering technologies; biologically based risk-assessment methods; and
bioremediation technology. Future ecological issues include biodiversity, bioavail-
ability, and bioaccumulation; as well as environmental equity and justice,
especially for children. Research issues germane to technology transfer are also
agenda items to be considered by the program.

      Dr. Lawrence Clark of the University of Arizona Cancer Center, along
with other scientists, has worked with the community group Living Is For
Everyone (LIFE)  to investigate high rates of multiple myeloma, lupus, and
leukemia possibly related to hazardous exposures. These groups developed data
that gained media exposure and political attention,  as well as government
funding to address the problem. When LIFE was worried about excessive
mortality from the three diseases but couldn't obtain data from local or State
health departments to use for comparison studies, a member of the staff at the
local morgue gave a LIFE  member information from death certificates that was
then provided to  Dr. Clark. Compared with previously collected national data,
5.7 cases of multiple myeloma should have been diagnosed in  Nogales over 5
years; instead, 25 cases were reported. Four cases of systemic lupus should have
been found; records revealed 19 possible cases.  (Some of the cases did not have
all the signs of lupus.) Fifteen cases of leukemia should have been diagnosed; 26
cases were diagnosed. Believing there might be environmental causes for the
disease rates, the epidemiologists and LIFE identified potential  hazardous
exposures.  Nogales, AZ, is north of Sonora, Mexico, and air and water flow north
from that country. One possible source of exposure  to hazardous substances was
a municipal dump in Sonora. The dump, now being cleared, burned spontan-
eously in winter and caused inversions over Nogales.

      Other possible  sources of exposure included soil and water contamination.
The diseases might be linked to excessive exposure to diesel fuel fumes from
trucks crossing the border, pesticides and herbicides sprayed on vegetable crops
after shipment from Mexico, kerosene and wood fumes used for heating in
Mexico, fumes from waste burning at a cattle dipping station  in Mexico, and
pollutants from American-owned factories in Mexico that disregard hazardous
waste concerns. Exposure  to paint and solvents and use of hair  dye and some
medications also might contribute to the diseases. Once these potential hazards
were identified, intensive scientific research was needed  to link specific expo-
sures and diseases. Such time-consuming, complex research can be  frustrating to
a community. For example, documents needed to support conclusions in Nogales
included medical permissions and records from many sources, and standardized
systems for recording  and  evaluating data had to be developed and implemented.
To assess the presence of lupus, community screening was needed.  (If all

                                                         Central Issues Sessions
 reported lupus cases were confirmed, Nogales would have the highest rate in the
 world.)  Dr. Clark is planning a household survey to gather additional

       Epidemiologists can use known exposures to determine those diseases that
 would be community problems, but it is difficult to document specific links
 between the environment and illnesses, especially when the diseases are rare and
 difficult to diagnose. Community groups may be able to use intermediate
 markers of exposure and disease to prompt government action. To truly link
 exposures and effects, cohort and large cross-sectional studies are needed. These
 studies produce possible disease correlations for statistical analysis, but between
 98 and 99 percent of the studies have found that excess disease clusters are
 caused by chance or by unidentifiable exposures. Research data for any commun-
 ity must be as accurate as possible because State and local health departments
 are often reluctant to conclude that clusters of excess disease are caused by
 environmental factors.

       Dr. David Ozonoff of Boston University School of Public Health termed
 environmental justice a matter of justice, not a matter  of science or research.
 Science, such as epidemiology, can help establish fair and just policy by helping
 to determine the nature and extent of systematic, unequal distribution of
 environmental burdens and benefits, but a society that allows these unequal
 burdens to exist does not make them easy to discover. The obfuscation is
 accomplished by criticizing the scientific merit of environmental justice studies.
 While many  studies have methodological problems, and scientists should always
 design and implement the most rigorous studies possible, study flaws should not
 be used to deny the existence of environmental injustice.

       An activist research agenda must be informed and derived from collabor-
 ation with the affected communities, as Dr. Ozonoff did with a poor Boston
 neighborhood that found trash .to be its principal environmental problem.
 Activists framing a research agenda must focus on a key question: Are there
 useful ways to classify environmental burdens that express how they are
 experienced by the affected communities, and might such classifications reveal
 effects that are not visible when more academically conventional categories are
 used? To answer this question, researchers must address  complex mixtures and
 multiple conditions that occur simultaneously in affected  communities, including
 health status indicators, violence, and rodent infestation.  Scientists must develop
 broad research categories and a holistic approach that considers ways to deter-
 mine or quantify the context of the problem. Social context is relevant for
 epidemiological research; research questions must evolve from collaborating with
 the community.

      Dr. Burnett Gallman,  a physician from Columbia, SC, observed that
 despite known disproportionate waste dumping in low-income and minority
 communities, the concept of environmental racism is not well received  by people
 with power, who are likely to consider money more important than the health of
 future generations. People whose traditions emphasize  respecting the earth  tend

1                "                   ~                                    41

Symposium on Health Research and Needs To Ensure Environmental Justice	

to be most adversely affected by environmental injustice.  Environmental racism
is a symptom of the larger failure of the culture to develop a holistic approach to
life. Although some may believe environmental racism does not exist, evidence
exists that environmental racism is indeed a problem. Dr. Gallman has an
interest in excessive cancer rates among minority groups, especially those who
live near polluted sites. He believes that the deaths from cancer that are
common in his own family are related to early living conditions experienced
when he was a child. He grew up near Lake Robinson Nuclear Plant. He
remembers water skiing on the lake with people who have died from cancer or
are battling the disease. However, attempts to find relationships between cancer
clusters and corporations in South Carolina were blocked by several means,
including death threats. Current cancer records include little information about
possible links between racial inequalities and disease. He urged that people work
together to create a society that values quality of life for coming generations.

       Irasema Coronado, a Ph.D. candidate in political science at the Univer-
sity of Arizona, told how in 1990 she participated in a binational, inter-
disciplinary study of shared  water resources in the border region that includes
Nogales, AZ, and Mexico. A group of hydrologists, lawyers, political policy
analysts—including Coronado, economists, and civil engineers from Mexico and
the United States—analyzed resource management along the Santa Clara River,
which starts in the United States, loops through  parts of Mexico, and then flows
back  across the border into the Colorado River. During the study, Ms. Coro-
nado found that government agencies often impeded the  resolution of problems
by focusing on regulation rather than  prevention.

       While the government defines environmental justice as the fair treatment
of people of all races, cultures, and incomes with  respect to developing, imple-
menting, and enforcing environmental laws,  regulations, and policy, she consid-
ers this definition to be bureaucratic and inadequate. Fair treatment means that
no racial, cultural, or socioeconomic group should bear a disproportionate share
of negative environmental consequences of operating industrial or commercial
enterprises and executing local, State, and Federal  programs and policies. She
asked the audience to send her less bureaucratic  definitions.

       Better research  designs are needed to address environmental justice
issues. They must be multidisciplinary; must distinguish among social, cultural,
political, and environmental variables; and must include all those involved  in
making and sustaining policy, including representatives from industry, science,
academia, government, and the community. This approach will ensure that each
group is heard and committed to the study and that no group discredits the
work. Political will must be generated to ensure that research findings are
translated into  law and policy; without political will, all the research in the
world will not ensure environmental justice.  Researchers can find problems and
identify causes, but nothing happens without the support of the community and
politicians. As part of the process, the community must be educated about
research limitations, and researchers must learn that problems require more
than technical solutions. Forging effective collaborations can be challenging, but

                                                            Central Issues Sessions
 the era of cooperative study is here to generate creativity and economize on
 research funding. To facilitate cooperative research, community groups and
 researchers must ask themselves deeper questions and share the answers.
 Community groups must determine what they want to do when the contaminant
 is identified, especially if it is  a byproduct of an industry that employs them.
 They must understand that their role includes generating part of the political
 will and votes needed for change. Researchers must decide whether they are
 conducting a study to facilitate change, enhance a theory, publish an article, or
 help a  community. In addition, research quality can be improved if information
 is published about research designs that succeed and fail.
 Panel and audience comments

 v Dr. Clark: Epidemiologists can use known exposures to determine which diseases might
 plague a community. But it is difficult to document links between the environment and
 illnesses, especially when diseases are rare and hard to diagnose. He is looking for inter-
 mediate markers of exposure and disease that community groups can use to elicit govern-
 ment action.

 * Audience member: Scientific studies should be conducted with the Mexican government,
 when appropriate. Polluters may knowingly release hazardous wastes into the environment.

 * Dr. Clark: He was encouraged by American authorities to work with the Mexican
 government. Extrapolating research from one community to another is limited by research
 problems and attitudes of many State and local health officials. Current epidemiological
 methods do not exist for widespread extrapolations. Key exposures may be missed. The
 challenge of environmental epidemiology is to find a link between exposures and effects.

 T Dr. Ozonoff: Results of the type of study he described could be used in court to get relief
 for a community.

 T Audience member: .Community groups should.develop leading to
 criminal prosecution for environmental injustice.

 T Dr. Gallman: These laws should apply to both the government,  especially the military,
 and the private sector.
Central Issues Plenary 4:  Pesticides

       (The moderator was Dr. Marion Moses of the Pesticide Education
Center in San Francisco.)

       Arturo Rodriguez, President of the United Farm Workers of
America (UFWA), described farmworkers as tending to be people of color,
minorities, and the people most likely to be affected by the use of chemicals in
the fields, especially pregnant women and children. California has mostly
Mexican, Filipino, and Asian farmworkers, with some workers  from Latin
America.' Florida and Louisiana have large migrations of African Americans and

Symposium on Health Research and Needs To Ensure Environmental Justice

Haitians working in the citrus fruit and sugar cane fields. Puerto Ricans work in
the fields of New York and New Jersey. Because many are migrants with no
permanent residence, it is hard to measure what happens to migrants in the
fields. They have no political or economic base and little power over their lives.
They live from day to day, with no pensions, savings, or retirement plans.
Worker protection legislation such as the National Labor Relations Act excludes
farmworkers. Among States, only California offers farmworker protection, and
its Republican leadership does not enforce it.

       Chemical exposure is a major problem for farmworkers and their children,
but little has been done to address it. Workers have minimal protection from
pesticides and get little training or instruction. When they do get information, it
is usually in English, which many farmworkers don't speak or read. The
workers understand pesticides as a medicine; they believe crop dusters apply
medicine to the fields, but do not know they are working with toxic chemicals.
Yet, the effects of the chemicals surface when, for example, pregnant women who
work the fields give birth to children with congenital defects such as missing
limbs. Exposure is compounded because people not only work in the fields; they
live near the fields and socialize in farmworker towns nearby. Several times a
day, crop dusters pass over the fields, spraying while workers pick crops.
Pesticides enter the water supply and permeate the soil. The result is cancer

       Dr. Richard Fenske of the University of Washington, who has spent
 15 years studying pesticide exposure in different environments, noted that while
people working in  agriculture live where they work, regulators oversee the
workplace one way and the home another. Children should be classified as a
special subgroup because they play and live in environments that are designated
as production facilities. But even when the workplace and residence are sepa-
rated, chemicals may be carried home by workers  on clothes and shoes. Since
researchers have documented take-home exposure for lead, mercury, and other
chemicals, logically such exposure also occurs with pesticides; preliminary studies
support this hypothesis. In the 1960s and  1970s, the Federal government
established a surveillance program for community studies with regional branches
throughout the United States, primarily through State departments of health.
But in the late 1970s and  early 1980s, the program was discontinued. EPA's
university-based Pesticide Hazard Assessment Project, in which 10 to 12
universities with research teams conducted human population field studies on
workers and children, also ended in the early 1980s. The National Human
Exposure Assessment Survey is the only existing program focused on exposure to
many chemicals, and pesticides are a component.

       States now have poor enforcement capabilities and haven't extended laws
to cover agricultural workers. Research is needed to identify and enumerate
populations that are at risk, which obviously includes workers and their  chil-
dren. The task is expensive and logistically challenging; it must include system-
atic assessment of exposures among workers and children and focused studies on
chronic health risk. Interagency collaboration on research is needed because

                                                         Central Issues Sessions
 pesticides and their health risks fall under the umbrellas of four Federal
 agencies. The National Academy of Sciences (NAS) has been a catalyst for
 moving toward greater collaboration among the agencies.

       Dr. Michael Luster of NIEHS pointed out that  the immune system is
 composed of multiple organs throughout the body that involve many cell types,
 making it hard to study. Pesticide or chemical exposure can trigger three types
 of immune diseases: autoimmunity—when the immune system recognizes host
 tissue as foreign; immunodeficiency—when the immune system responds
 abnormally to infectious agents or cancer cells, leading to more severe and
 frequent infections; and hypersensitivity—when the chemical or pesticide binds
 to skin tissues. The immune system recognizes this complex of pesticide plus
 skin tissue as foreign and tries to reject it. In humans, the evidence for immuno-
 deficiency in chemical exposure is weak, but some data exist. For example,
 researchers have seen moderate changes in immune responses associated with
 exposure to pesticides such as carbamates and some fungicides. Researchers also
 see changes in lymphocyte populations. The problem with the changes  is that
 individual studies are scant; researchers have studied only  a few individuals,
 have seen moderate changes, and have not documented an association between
 exposure levels and immune changes. Researchers found no obvious clinical
 changes, such as increased incidence of influenza. Although data are better from
 animal studies, in which tested animals were exposed to  chlordane and some
 organophosphates like malathion and parathion, it is hard  to extrapolate these
 results to humans because the test doses are higher than humans would receive.

       Researchers have shown no association between autoimmunity and
 pesticides, but evidence documents the presence of auto-antibodies. A person
 with auto-antibodies does not necessarily have a disease, but the antibodies may
 indicate the possible onset of disease. This situation has been observed in people
 exposed to pesticides  and organic solvents, and several cases of humans with
 autoimmune disease have been reported but not confirmed. Evidence for a link
 between hypersensitivity and pesticides is strong. For example, there is evidence
 linking allergic contact dermatitis (skin hypersensitivity) in humans to fungi-
 cides and carbamates, and there is considerable evidence for irritant contact
 dermatitis, an inflammatory response that mimics hypersensitivity without
 involving immune cells. This result is more often associated with inert ingred-
 ients like copper sulfide than with active ingredients in pesticides, and this
 problem is serious.

       The very young and very old are most sensitive to immunodeficiency. For
the young, immunosuppression can cause long-term persistent effects because
their immune cells are still developing. Adult exposure to immunosuppressant
compounds is usually short term. The elderly are at risk because they already
have compromised immune systems, and further immune-system suppression
may cause more diseases and potential death. Because autoimmunity usually
occurs in females, any association with pesticide exposure will likely happen in
female populations. Most who develop autoimmune disease have a specific
genetic phenotype. The result is that people with preexisting diseases are at very


Symposium on Health Research and Needs To Ensure Environmental Justice	

high risk when exposed to pesticides.  Data on hypersensitivity and irritation
give hard evidence of pesticide dangers; data on immunosuppression and
autoimmunity give warning evidence. Animal studies and some human case
reports exist to verify the dangers. There is enough evidence to warrant concern;
the primary research need now is for good immunoepidemiological studies.

       Dr. Joan Cranmor, editor of "Neurotoxicity" and a staff member at
Children's Hospital in Arkansas, noted that  key differences  make children more
susceptible than adults. A transplacental route is a pathway for contaminants:
Whatever the mother ingests or is exposed to—especially low-molecular-weight
chemicals or lipophilic (fat-attracted) chemicals—can reach the fetus and the
fetal brain. Children have higher respiratory rates, absorbing more contaminants
faster and more effectively than adults, and they have more skin surface area
and greater caloric and fluid intake in milligrams per kilogram of body weight.
Safety levels of exposure for adults will not protect children.

       Research is needed on "silent toxicity," involving delayed and latent
effects of exposures.  The nervous system is vulnerable and unique because it
cannot repair or replace itself: it is easily accessed by chemicals and has inter-
related parts, which  means minor changes can have major consequences.
Because the nervous, endocrine, and immune systems are interrelated, altering
one of them affects the others. If during development—when cells proliferate,
migrate, and differentiate—some cells are lost, the person may function normally
for a time, with consequences appearing later in life. Some conditions such as
hyperactivity, mental retardation, and learning disabilities have led to pediatric
test batteries for early diagnosis. When dysfunction is recognized early, interven-
tions can be implemented.

Panel and audience  comments

* Mr. Rodriguez: After publication of Rachael.Carson!s Silent.Spring, .which, raised public .
concern about pesticides, union organizers recognized the problem of chemical exposure. In
the early 1960s, they recognized pesticides as a critical pollen related to the safety and health
of farmworkers and consumers. In 1968, the UFWA was instrumental in using collective
bargaining agreements to ban dichlorodiphenyltrichloroethane (DDT). In 1970, the union's
first major boycott of the California table grape industry used the issue of pesticides to hold
up settlement for an additional year. When the strike ended, four chemicals were banned
from grape fields, the most labor-intensive agricultural crop. To date, labor's traditional
tools—boycotts and collective bargaining agreements—have been the  major levers for forcing
growers to heed environmental warnings. Unions have gone beyond government regulations
in their collective bargaining agreements by requiring clothing, testing, and monitoring the
use of chemicals.

T Dr. Moses: In 1984,  growers used 175 pesticides. Two years later, the number dropped to
133. Today the number is 75. However, one constant hasn't changed, he noted. Citing
medical toxicology data from the State of California, gathered under  State law (the Birth
Defects Prevention Act), Moses said that 40 percent of pesticides in use cause tumors in
animals, and most tumors are cancerous. Thirty-four percent of pesticides cause reproductive
effects, 24 percent cause birth defects, and 36 percent exert mutagenic effects, damage
chromosomes, or alter DNA.

                                                        Central Issues Sessions
 Central Issues Plenary 5:  Workplace Hazards

       (The moderator was Dr. Richard Lemen, Acting Director of NIOSH.)

       Irma Dey Ande, a former farmworker and advocate for farmworkers,
 said there are between 3.2 million and 4 million farmworkers in the United
 States, mainly people of color, and that farmwork is dangerous. Most farmwork-
 related hazards aren't regulated by the Occupational Safety and Health Act,
 possibly because of pressure from the agribusiness lobby. Farmworkers often are
 uneducated about the dangers their children face from exposure to pesticides,
 harsh sunlight,  and other hazardous conditions. Without adequate day care, they
 take their youngest children into the fields. Pay rates for adult workers must be
 raised so that children are not forced to work. The plight of farmworkers has not
 changed in 60 years because no regulations pertain specifically to farm work, and
 applicable regulations that do exist are poorly enforced.

       Linda Anku,  OSHA Administrator for Region III, asserted that most
 workplace disputes can be resolved if employers and employees respect each
 others' rights and responsibilities. Among the sections of the Occupational  Safety
 and Health Act  that empower employees to address workplace issues more
 effectively, one section ensures that workers receive the information they need to
 react knowledgeably to occupational hazards. Employers must give workers
 (1) access to OSHA information; (2) training in workplace safety; and (3) envi-
 ronmental monitoring data and results. Employers must display lists of worker's
 rights; log workplace  illnesses and injuries; and post an annual list for employee
 use. The Act also establishes a worker complaint procedure. Because OSHA is
 underfunded, these investigations take about a month to process, with a quicker
 response if a worker is in immediate jeopardy. An appeals process is available.
 Furthermore, if employers discriminate against workers who register complaints
 with OSHA,  a special appeals process.can be implemented, although .this, process
 is lengthy. OSHA's jurisdiction covers any business that affects commerce.
 However, agribusinesses are exempt from most OSHA regulations,  except for
 sanitation and housing rules.

       OSHA tries to  encourage employers and employees to comply with basic
 workplace guidelines: Employers are to provide pertinent information about
 safety and health hazards and protective equipment, and workers are expected to
 use information and protective equipment provided by their employers. For
 information,  call NIOSH at 1-800-35NIOSH or national and regional OSHA
 offices, and State and local occupational safety and health committees.

       Dr. George Friedman-Jimenez  of Bellevue Hospital in New York City
 reported that available literature suggests that low-income people and people of
 color are more likely to get occupational diseases and be exposed to toxins.
 Occupational health studies can contribute to advances in our understanding of
 environmental science; occupational health studies have included community
participation and can  serve as examples for developing a new environmental

_        .   _                                                           —

 Symposium on Health Research and Needs To Ensure Environmental Justice	

 research paradigm. More and better occupational health research is needed,
 including data on toxins and sotioeconomic, ethnic, and racial issues. Of the
 more than 60,000 commercial chemicals that may be present in the workplace,
 only 10,000 have been tested for toxicity. Every year, between 50,000 and 75,000
 people in the United States die of occupational diseases, defined as those that are
 caused by environmental exposure in the workplace. A General  Accounting
 Office study conducted in New York City found about 50,000 people—many of
 whom were people of color—work in sweatshops (such as garment factories) that
 violate labor, safety, and  health codes. But OSHA only had funds to inspect 1
 percent of apparel factories and restaurants in New York City over 5 years.

       Female  workers of color traditionally work in health care, clerical, and
 home-based jobs, many of which involve high risks for developing occupational
 illnesses.  They have three separate risk factors for occupational illness: sex,
 ethnicity  or race, and likely employment.  Low-income individuals and people of
 color usually have more difficulty gaining access to health care and a higher risk
 of occupational illness. Because many women lack accessible clinical services and
 education, and because research on their problems is inadequate, information
 and political will are needed to allow all individuals to access competent clinical
 health services.

       Dr. Knute Ringen, Director of the Center to Protect Workers'  Rights,
 observed that government can be effective—one example is the success  of Federal
 efforts to protect the health of coal miners. But industry often will try to get
 around Federal and State regulations. Many businesses, such as the construction
 trades, have hired people as independent contractors rather than as employees.
 An estimated 25 percent of the workforce is comprised of independent contrac-
 tors. The Federal government considers independent contractors to be self-
 employed and not covered by workplace safety regulations that  apply to
 employees. In one California study documenting differences in the health status
 of individuals based on occupation and race, the life expectancy  of laborers was
 20 years less than the life expectancy of physicians. Among laborers, the life
 expectancy of blacks was  lower than that of whites. The United States must do a
 better job of primary and secondary prevention. The time may be right to work
 toward this goal.
Panel and audience comments

T Audience member: Health researchers and educators should contact workers in schools
and other community facilities because employers won't make workplace space available to
train employees about occupational hazards and environmental justice issues. A government
representative said OSHA and EPA cooperate, but this cooperation has limitations. In some
States, State government enforces OSHA regulations; these are "state-plan" jurisdictions.
Regardless of whether the State or Federal government enforces the law, enforcement
agencies have financial problems.

T Audience member: OSHA should be able to use criminal penalties as remedies for
violations. Ringen said the reforms of the Occupational Safety and Health Act currently

                                                          Central Issues Sessions
 being debated in Congress include criminal penalties; he predicted that asking for this
 provision probably would lead the Senate to block passage.

 * Audience members: Participants talked about people fired for complaining about
 worksite dangers or filing workers' compensation claims. Ringen and Anku said the Act
 provides recourse through whistle-blower protection provisions and oversight of state-plan
 jurisdictions. In some circumstances, the Federal government can bring suit on the worker's

 T Dr. Ringen: National  and State cancer registries do not collect information on occupation.
 But the information collection processes instituted as part of health care reform may enable
 researchers to capture these data.
 Central Issues  Plenary 6:  Superfund

       (The moderator was Sandra Coulberson, program manager for
 ATSDR's Minority Health Program.)

       Timothy Fields, Director of EPA's Superfund Revitalization Office, said
 the 1980 Superfund Act required EPA to have a hazard-ranking system for
 developing criteria for national priority sites; this system had to account for
 threats to drinking water, populations at risk, human food-chain toxicity, and
 damage to sensitive environments. The system ranks the likelihood of hazardous
 release of a substance and actual releases and determines how dangerous the
 releases are (by their toxicity and quantity), how difficult they are to manage,
 and how people might be affected. In 1991, EPA revised the criteria on the
 national priorities list (NPL) to include more residential areas and school or day
 care properties with contaminated soil; surface water food-chain sites according
 to bioaccumulation (a measure that accounts for human food-chain uptakes from
 fish and other elements that contaminate people); and sites that had major
 adverse impacts on small communities. In addition, the hazard-ranking system
 now deals with sensitive environments, including ecosystems.

       The NPL includes  1,288 sites that score higher than 28.5 on the Federal
 hazard-ranking system, 155 of which are Federal facilities. About 73 million
 people live within 4 miles of an NPL Superfund site. While the hazard-ranking
 system is a screening tool designed to identify sites of Federal interest, it is not
 the final determinant of risk. Once a site makes the NPL, EPA conducts further
 studies to determine its risks and how much of the site must be cleaned up.
 Under current law, EPA recognizes that environmental justice communities may
 need special focus. The EPA is studying NPL sites in communities where
 environmental justice issues are a concern and is promoting legislative changes
 in the process. The bill requires that multiple-risk sources to affected commun-
 ities must be among the criteria for setting priorities, which would let EPA take
multiple exposures  or cumulative risk into account when considering such
hazard source. The new model factors cumulative risk into the ranking system
and response timetables and has provisions for a 5-year demonstration program.

Symposium on Health Research and Needs To Ensure Environmental Justice
       Earl Tulley, representing a 23,000-square-mile sovereign Native Ameri-
can nation, remarked that communicating pollution dangers to Native Americans
isn't easy. When people do not have or understand electricity, how do you help
them understand radiation? How do you explain an energy that pierces skin and
creates cancer? People attended the conference because of survival instincts. The
Federal government should spend money for direct investigations on where it
has gone wrong and what national priorities it must change. It is more impor-
tant to learn why people hurt from cancer than to learn how long it takes to
cook an egg.  Now that the issue of environmental justice has been raised, he
urged participatory dialogue between corporations and individuals. Environ-
mental quality issues  must consider the waste people create that typically goes in
to someone's backyard, then to a landfill that evolves into toxic soup. When the
landfill liner  ruptures, contaminants go into somebody's water.

       Pat Bryant of the Gulf Coast Tenants' Association said the Superfund
process is rigged so the government won't have to clean up poisoned commun-
ities. About 24,000 sites were poisoned because of actions of individuals in the
Federal government, not industry. After the country spent trillions of dollars to
develop the military infrastructure of weapons plants and testing sites, there's
no money to clean it up. People of color are disproportionately poisoned, and
there's not enough money to clean everything up. The  objective becomes a
limited cleanup that bring sites up to standard for a future industrial site, an
approach that's cheaper and easier than a total cleanup. People at EPA are part
of a rigged system. For example, the Office of Management and Budget (OMB)
tells EPA how much money it can ask to clean up sites, so EPA's request to
Congress has little basis in reality. Since funds won't be increased until com-
munities protest, communities should  get involved as soon as someone thinks
there is poison. There should be a technical resource bank of experts who can
help average citizens understand the science. Establishing resource banks in the
South would unite historically black universities and community organizations to
give information to suffering communities. Then the communities can wield
political pressure on congressional representatives. Is there enough money? If
there is, people can be trained  to clean up the mess, and universities and
businesses can be involved in the training.

       Dr. Linda Rae Murray of the Winfield-Moody Health Center in Chicago,
IL, declared that in this political debate, science's role is to determine where to
implement change. People of color are between a rock and a hard place, which is
nothing new. Her principal problem as a physician is lack of data. Epidemio-
logical studies are important. The biggest problem is no one cares why lung
cancer in black men is rising. Nobody is worried about  what uranium mines are
doing to Native Americans. Society has misused science and scientific data to
exploit people of color and poor people. Recognizing this misuse has made poor
black patients skeptical about medical pronouncements. She wants to know how
many people  in her community have elevated lead levels, why the prevalence of
asthma is skyrocketing, and why blacks and Latinos are showing huge increases
in asthma deaths. It doesn't matter whether you work  for the Federal govern-
ment or are a skilled professional or a community leader. The information

                                                          Central Issues Sessions
 available doesn't target the information needed. People want a simple answer to
 a simple question: Will this contaminant make me sick? Nobody knows. Every-
 one must understand the limits of current knowledge. One lesson from occupa-
 tional health is that you don't need all the answers. Asking the right questions
 marks good science, but cannot afford to wait until all the answers are in. If one
 does a health study, one tries to make the data as good as possible. Consider
 auto workers in a plant, 70 percent of whom are white, and 30 percent black. A
 study  of these workers might have a small number of blacks whose different
 health profiles (cancer rates, prevalence of high blood pressure, kidney failure)
 could muddy the research methodology. One can't ignore the differences.

       In a nation that can't even count people who are born, we have major
 health data gaps. Environmental and occupational causes  of poor health are hard
 for people to accept, because accepting the carcinogenic impact of the environ-
 ment and workplace is politically dangerous. The solution is a public health
 solution. We look at the data, ask questions, take the information we have, and
 come up with the best solutions. Next year we do the same, trying to improve
 our solutions. Erring on the side of protecting human health  takes courage and
 money. We are a rich nation that is not overtaxed. We can pay more taxes.

       Dr. Cynthia Harris, Chief of ATSDR's Community Health Branch,
 spoke of ATSDR's charge by Congress in 1980 to look at the effects of environ-
 mental contamination on communities. In 1986, that responsibility was
 broadened to include preventing and decreasing the adverse health effects from
 exposure to hazardous substances in the environment and training health care
 professionals in environmental medicine, developing toxicological databases, and
 disseminating information to the public. As a PHS agency, ATSDR took the
 United Church of Christ's landmark report on toxic waste and race, the black
 and minority health report from DHHS, and all other data on health status and
 care that it could locate for people of color, and elected to  address fundamental
 inequities by investigating the extent of disproportional impact of contaminants
 on people of color. As early as September  1990, ATSDR organized a conference
 on national minority health—the first time a PHS agency  sponsored a conference
 focused on environmental contamination and people of color.
Panel and audience comments

T Audience member: This participant asked for information on research on DNA prints
that ultimately would let a researcher discover when a person was exposed to a specific
toxin. An attendee from NEEHS answered, citing research on biomarkers involving samples
easily gathered (hair, feces, fingernails, skin, blood, urine). Biomarkers are also available
from liver or bone biopsies, but these can be expensive and difficult to gather. Scientists are
working with biomarkers to identify genetic changes—if any—from a given contaminant.
They are not looking for biomarkers to indicate the time of the exposure, however, because
"the science just isn't there."

T Audience member from Detroit: One agency gave a company permission to pollute,
that is,  a legal consent order to improve its operations over 10 years. Because the

Symposium on Health Research and Needs To Ensure Environmental Justice	

enforcement agency set no timetable or consequences, at the end of 10 years, the company
closed its doors. The company moved its money elsewhere to enable it to legally declare
bankruptcy and close down. It never cleaned up its operating facility.

T Audience member from Pensacola, FL: Federal agencies did not respond quickly to a
community request for information and help. Fields said he would check on that commun-
ity's status. Communities in Louisiana, Texas, and Florida are being considered for the next
NPL update due out this spring. Each year, EPA lists 100 sites with two new listings a year.
A site that scores above 28.5 will be listed, although EPA lists a limited number of sites.
This fall, EPA started a new program of State deferrals. If a State can manage to clean up a
site scoring above 28.5 and follows EPA guidelines, EPA will allow a limited number of State
deferrals. A site that scores above 50 makes the NPL.

T Dr. Harris: She said she will check on Pensacola. The process is supposed to work as
follows: As soon as a site comes to ATSDR's attention, an onsite team is sent to talk to the
community about its concerns. This dialogue should be ongoing throughout the health
assessment process. She welcomed input on how ATSDR might improve its operations.
Another attendee said this process had not begun in his community.
 Environmental Justice Press Conference

       Dr. Devra Davis:  There are all kinds of studies and information we can
 develop to resolve questions about the impact of the environment on minority
 populations: for example, "black Love Canal" in Alabama, which never made the
 headlines but occurred through the 1970s and finally was settled in 1980. That
 rural Alabama population had the highest levels ever recorded of DDT and DDE
 in human fat. Residents were exclusively black with subsistence agriculture and
 fish in their diet. They (20,000 of them) received a settlement in 1980 from the
 Olin Company.

       Dr. Phillip Lee: Lead poisoning is an example of how, by developing
 measures of lead levels, we can identify exposures. Leaded gasoline posed a
 significant environmental hazard that was abated by removing lead from
 gasoline. We must do similar things with other  hazards, but we need science to
 identify the problems. That's why we're developing university-based centers
 linked to communities.

       Dr. Kenneth Olden: The guidelines for such centers included that they
 develop community relationships.  We want  evidence that they have support of
 community organizations and they can do the science, exposure monitoring, or
 outreach. The three we funded met these criteria. Collaboration could be with a
hospital, a local clinic, or any other community  group. We want to show that the
 scientific and parent organizations have community participation. That is key.

       Dr. Davis: Under health care reform, NIEHS will receive funds for
prevention-based research. I'm sure you will see more money made available for
these kinds of questions. With respect to health care reform, it's important to
realize that core public health functions are based in State and local health

                                                         Central Issues Sessions
 departments, and we're trying to figure out ways to help them serve the needs of
 their communities with respect to environmental health issues.

       Reporter: Could you tell me what the trickle-down effect of all this will
 be on the regulated community? They will have to play a part.

       Dr. Olden: We think there will be a major impact. We have been trying
 to involve the regulatory agencies at the outset, when we go to communities to
 monitor and do the research. We want to involve EPA, FDA,  OSHA, and the
 Food and Drug Administration in developing the science. We  want to make sure
 we ask the right questions so regulatory agencies can do their jobs. Dr. Lee said
 Federal agencies haven't always cooperated and collaborated the way that they
 should. Scientific agencies often generate science that is not user-friendly,
 needed, or desired by the regulatory agencies. So we are making sure that
 regulatory and scientific agencies collaborate to generate the data needed to do
 human risk assessment.

       Dr. Davis: There is great interest in many of these communities in
 noncancer health effects. Traditionally, risk assessment has relied on cancer as
 an end point, but it's costly, takes time, and there are legitimate questions about
 its use. Questions about asthma, low birthweight, reproductive effects, and
 immunological effects deserve assessment. NIEHS is leading in that kind of
 work, which will help regulatory agencies develop more rational policy and allow
 industry to have  a sense of what the future will bring for these issues.

       Reporter: EPA requires companies to give out toxic release inventory
 data every year, and increasingly, people have correlated toxic release data to
 communities in terms of race and income. What is the next step in looking at
 diseases that might have come from a given chemical? Communities have started
 correlating this stuff. There has only been one attempt that correlated to a
 particular disease. On a national level, you could pinpoint it to the communities.
 Do you know if that is actually going on?

       Dr. Olden: We started the Environmental Justice Research Centers to
 make certain that this correlation will occur. I have been Director of this
 Institute for  21A years. Such correlation was an area I felt we had to strengthen
 to make sure we know that exposures exist. We must begin to understand if the
 exposures cause diseases. The only case where we know that happens is  lead
 poisoning. Kids who are poisoned live where the lead is. But people live in areas
 where we know there are carcinogens or other toxins in the environment, but we
 don't know with certainty those toxins cause disease or dysfunction. That
 information is critical. If you want to ask policymakers to allocate resources
 differently for a public health policy, you need more science. We must go into
 some communities and show that the agents people are exposed to cause cancers,
respiratory dysfunctions, and birth defects. Regulatory agencies and communities
can act on these kinds of data. At this point, they don't have the data.

Symposium on Health Research and Needs To Ensure Environmental Justice	

       Chemical engineer: How much does risk assessment cost? We could
prevent the problems with 10 percent of the money you are spending in your
awards for risk assessment. You need to understand process engineering.

       Dr. Olden: You need both. The most human, cost-effective approach to
human diseases is to prevent them. If we can prevent exposures, that approach
is the right one. But there are some exposures we cannot prevent; society didn't
become industrialized yesterday. The environment is polluted; lead has gone way
down,  but millions of kids are lead-poisoned every year.

       Chemical engineer: Lead did not go down because of the studies that
were done.  It went down because of public policy.  The cost of the substitution
was much less.

       Dr. Olden: There would be no legislation on lead and the present
standard set by CDC would not exist without science. Two years ago when I took
over as director of this Institute, the regulatory standard set by CDC was 25
lj.g/dL of blood. CDC changed that within a year of my appointment to 10 fig/dL
of blood. It changed because the science had advanced with regard to low lead
levels.  Ten years before that, the standard was near 44 or 45 /xg/dL of blood. The
standard changed because of science.

       Dr. Davis: The best solution to pollution is design control. Pollution is a
failure in design. Innovations in chemical engineering will help reduce the
pollution load. But reducing lead in gas  is a public  health success story. This
reduction was fueled in part by findings that there may not even be a threshold
for lead. We have to drive it further. Research in this area was substantially
funded by NIEHS over many years. It continues because lead has neurotoxic
effects and seems to have osteoporotic effects on older women and hypertensive
effects on working men. We must reduce pollution.

       Dr. Olden: I have been working hard for 2V£ years to make sure the
Institute gets out into communities to reach people. I have visited hazardous
waste sites, cancer alleys. We have trips scheduled  to the central chemical
corridor in Texas. We go to the community, talk with mothers, fathers, workers,
industry representatives—anyone who will take the time to talk with us—to find
out what the issues and concerns are, and how they feel we could address them.

       Dr. Davis: (Regarding a question on the problem of experiments at
government facilities exposing workers and community residents to hazards) I
hope you in the audience will make sure that the right  agencies  working on this
now—DOE, CDC—will get the information that you have. The Secretary of
Energy has committed herself to a major policy with the President's full support
for complete disclosure on these things.  Representative Markey and Senator
Glenn are monitoring it closely.

      Audience  member: When are EPA and the Air Pollution Board going to
instruct State and local agencies to conduct air quality  studies? We have the

                                                        Central Issues Sessions
technology today, but when you talk with EPA, it doesn't have the techniques to
work in the field.

      Dr. Olden: We recognize that exposure monitoring is a real problem. We
are trying to work out an interagency agreement with the Department of
Defense (DOD) because it has mobile units that can go into communities and do
exactly what you want. If we can work out that arrangement, we could send out
a mobile unit to  your community to measure what is in the air, water, or soil to
determine what toxins you are being exposed to.

      Dr. Davis: If a site is assigned to the NPL, then ATSDR  can become
involved, working with NIEHS on the site's problems. And Dr. Barry Johnson,
ATSDR Assistant Administrator, is speaking now in the other room. I suggest
you talk with him.

      Dr. Olden: NIEHS has a mandate to determine the role of the environ-
ment in the etiology of any human diseases or dysfunctions—cancer, birth
defects, Parkinson's disease, Alzheimer's, asthma. We look at a spectrum of
diseases to identify environmental agents and prevent exposures. As we build the
infrastructure with the community, we will have answers, because you will help
us on the important issues.

      Dr. Davis: We are committed to improving the way to assess the link
between environment and health. One's environment does not explain all of
one's health, but it's hard to change things like your genes and what you ate 30
years ago. We focus on factors in the environment that affect health in order to
allow society to reduce those exposures to prevent disease. That's the ultimate

      Dr. Olden: In the previous administration, the emphasis  on the environ-
ment in public health policy focused on environmental factors over which people
had control—smoking, alcohol, drug abuse. There are environmental factors over
which individuals have no control. If you are poor and uneducated, you have to
live and work in  certain environments. Studies show those environments are the
most hazardous.  Let's get at environmental factors affecting human health over
which people have no control.


                                                         Breakout Sessions


      Dr. Philip Landrigan of Mount Sinai School of Medicine said that
research on lead toxicity not only documents problems, but also clarifies the
reality of those problems to policymakers, identifies prevention strategies that
work and are a sound investment, and helps marshal more resources for
pressing problems. The ATSDR and the CDC estimate that 2 million preschool
children have elevated blood lead levels, making it the most important environ-
mental health problem in the United States today. The burden of lead poisoning
is not distributed evenly; in poor, inner-city, minority communities, up to 40
percent  of children have elevated blood lead levels, versus less than 5 percent in
suburban areas.

      Despite century-old scientific reports that lead paint poisons children,
from the 1930s through the 1960s the lead industry vigorously marketed lead
paint as the ideal coating for houses. Although Australia and many European
countries banned lead paint earlier, a representative of the lead industry per-
suaded State health departments that lead paint was safe. Today, the removal of
lead paint will cost billions, and the injuries sustained by  the public cannot be

      Sources of increasing releases of lead into the environment include paint
dust, occupational exposures, industrial emissions, water, food, and cars that
used leaded gasoline. (Blood lead levels have dropped 70 percent since 1975
because of a decrease of lead in gasoline.) The margin between a safe lead level
in the body and a level that marks toxicity is narrow. For adults, lead enters the
body primarily through inhalation in the workplace, while children swallow
lead—often in paint chips.  Physicians test for lead in the blood; however, 90
percent  of lead moves to the bones. Other sites where lead accumulates include
developing red blood cells,  the kidneys, the central nervous system, and the
reproductive organs.

      Studies over the past  10 years have established that lead is toxic to the
brain at exposures as low as 10 to 20 /ig/dL in the blood—levels thought to be
safe 20 years ago. Symptoms of lead poisoning include decreased intelligence,

 Symposium on Health Research and Needs To Ensure Environmental Justice
 hyperactivity, inability to concentrate, and difficulty in focusing. Despite these
 facts, the real estate and lead industries still oppose some lead prevention and
 cleanup initiatives.

       Some important research questions remain unanswered: How does lead
 contribute to the development of chronic diseases of the nervous system in
 adults? For what percentage of people with Alzheimer's, Parkinson's, or Lou
 Gehrig's disease was lead exposure a factor? To what extent does lead contribute
 to kidney disease? Workers in smelters and battery factories die of chronic
 kidney disease at two to three times the rate of workers not exposed to lead.
 Researchers at Mt. Sinai School of Medicine are planning to investigate the
 potential damage of lead exposure to male reproduction because of reports of
 effects on sperm count and quality.

       Researchers know that lead can cross the placenta to the developing fetus,
 which is particularly sensitive in the third trimester. However, it is not known
 whether the lead in the mother's bone that accumulated long before mobilizes
 during pregnancy to cross the placenta. Researchers also are interested in deter-
 mining whether lead is mobilized from bone during both male and female
 menopause. And, if so, where does it go and what damage does it cause? Re-
 searchers suspect that more damage from lead occurs in minority communities
 than in other populations.

       It is important to note that children need not be exposed for any mini-
 mum amount of time to suffer damage. (An acceptable blood lead level for
 children is 10 /xg/dL, which is lower than that for adults.) A child who eats only
 one lead chip could have convulsions within a few hours. The best course of
 action is to prevent a child from being exposed to lead. Therefore, health officials
 recommend that families in houses built before the 1960s (which presumably
 were painted with lead-based paint) either move to a new home or keep the
 house very clean and in good repair. Because lead can also be found in tap water
 from old pipes, solder, and acidity, parents should let tap water run 2-3 minutes
 in the morning to flush out any accumulated lead. Children may also take iron
 or calcium supplements to decrease lead absorption, but neither supplement is as
 effective as preventing primary exposure. The best strategy involves both
 individual and group efforts,  with people banding together to force community
 governments and landlords to do the right thing.

       Chelation therapy has been used since the 1960s as a lifesaving technique
 for children with acute lead poisoning, but it cannot take the place of cleaning
 up the environment. It is not known whether children with a blood lead level of
 25-30 ng/dL, who typically have no symptoms, can be helped by chelation, nor is
 it known whether chelation therapy prevents further damage. NIEHS has begun
 a major 5-year study of a new, oral chelating agent that is less painful and less
 cumbersome than the intravenous agent. Many pediatricians are prescribing the
new agent.

                                                            Breakout Sessions
      Jefferson Rowland, a CDC/NIOSH epidemiologist, told about a fairly
new CDC/NIOSH program, Adult Blood Lead Epidemiology and Surveillance
(ABLES), that will track workers exposed to lead in the workplace and examine
whether they bring lead home to their children (take-home exposure).

      An example is a man who saws commercial-grade, lead-core batteries that
are filled with sulfuric acid. As he works, he breathes in lead dust and sulfuric
acid fumes, which also impregnate his clothes, skin, and hair since he is not
likely to have a respirator or protective clothing. The worker takes that lead
home on his body and clothing, thereby poisoning his children. The children's
exposure to low levels of lead can produce an insidious retardation of brain and
nervous development, resulting in learning, behavioral, and physical disorders.
Cumulatively, these effects on the families of the working poor perpetuate
overall social and environmental injustice.

      The problem of take-home lead surfaced 20 years ago, when James
Chishold wrote the seminal "Fouling One's Own Nest," which appeared in the
Journal of Pediatrics, but we still have no estimate of the magnitude of the
problem in the United States. ABLES is starting to address this knowledge gap
by collecting and analyzing lead surveillance data on adult workers in the United
States. Currently, lead-using industries are required to monitor the blood lead
levels of employees; when the test results are higher than 25 ng/dL, that infor-
mation  is forwarded to ABLES. Elevated blood lead levels mean that a company
is required by law to take additional preventive or corrective actions and  cannot
fire or lay off an affected employee. State authorities try to collect  additional
information on all reported cases, usually by telephone.

      This information underlies the epidemiological analysis  that ABLES
performs. When analyzed, these data can give insight into the  types of busi-
nesses involved and the workers exposed in a given State or locality. Currently,
20 States systematically report data to ABLES, and 10 States  are in some stage
of preparing to do so. Ideally, all States will eventually participate in ABLES
programs. Typical businesses seen in the ABLES database include  auto body
repair shops, commercial printers, radiator repair shops, battery recycling plants,
painting contractors, and bridge infrastructure/rehabilitation firms. Because
OSHA inspectors cannot constantly monitor all work sites, a business usually
does not clean up any problems until it is caught or reported for noncompliance.

      Currently, ABLES is trying to link the information collected on workers
with information on their children. In addition, CDC funds 10 States to conduct
laboratory-based surveillance, but we do not yet know how well this system
identifies children exposed to and affected by lead through the take-home route.
A recent finding was that the children of affected workers at a battery recovery
plant had blood lead levels much higher than those of neighboring children.

      State-based ABLES programs are providing anecdotal reports of potential
cases of take-home lead exposure. ABLES is also working with New Jersey,
Illinois,  and Massachusetts to identify children younger than age 6 whose

 Symposium on Health Research and Needs To Ensure Environmental Justice
 parents appear in the ABLES blood lead registry. These data are then used to
 describe the distribution of the children and their blood lead levels, the propor-
 tion affected through exposure, and which specific industries are involved.
 Routine screening is not likely to identify children contaminated via takehome
 lead, in part because screening is generally done as an entitlement or a need-
 based benefit, which would not apply to these children.

       When one session participant asked whether it is possible to measure the
 part that lead plays in children's performance, screening of all children age 1 to
 5 for lead was recommended, as  well as the possibility of testing women just
 before or during pregnancy. Another question concerned bringing small factories
 that do not protect their workers into compliance. It was noted  that small
 businesses are just starting to  come under OSHA's regulations and need educa-
 tion to get on the right track.

       Dr. Lisa Rosenblum from CDC described how CDC's current program
 focuses on children who are at highest risk and their greatest hazards, with the
 goal of eliminating childhood lead poisoning. The program funds 37 grantees for
 screening, case management, and education activities. Newly planned programs
 include a primary prevention program undertaken with HUD; an environmental
 justice program in collaboration  with EPA, HUD, DOL, and other agencies; and
 a community empowerment initiative  in collaboration with other DHHS officials.

       After NIH's contributions in basic research,  the most critical unanswered
 questions relate to applied prevention research:  Can prevention work, and how can we
 improve it? Prevention effectiveness research has traditionally evaluated lead hazard
 reduction strategies. Data from the first National Health and Nutritional Examination
 Survey (NHANES  1), a study published  by the NCHS of the CDC,  showed that child-
 ren's blood lead levels declined from 1976 to 1980, as lead in gasoline declined. The
 data convinced EPA to implement  more  stringent regulations vis-a-vis lead in
 gasoline, a rare environmental health success story. Then, when CDC evaluated
 hazard reduction activities regarding lead-based paint in  selected cities, analysis
 showed even minimal hazard reduction activities lowered blood lead levels in children
 who had initial levels of at least  35 ng/dL, but these activities were  inadequate for
 children with lower blood levels. (This fact is of great concern because children with
 lower blood lead levels still suffer  neurological damage.)

       CDC's current studies assessing the effectiveness and the safety of varied
 strategies for lead reduction differ  from earlier  studies in that they have more
 stringent standards  for (1) environmental interventions,  (2) relocation of families
 during abatement, and (3) abatement worker protection.  The goal is to find out what
 can lower blood lead levels in children.

       CDC and EPA have several cooperative agreements with State and local health
 departments to assess prevention strategies, and CDC also is collaborating with HUD.
 In 1994 CDC expects  to put forth a new Request for Applications to fund primary

                                                                Breakout Sessions
prevention of lead poisoning, with emphasis on community-based programs that
collaborate with the health, housing, and environmental sectors within the community.

       CDC also evaluates program and policy. For example, from 1985 to 1990 the
recommended policy was to screen only high-risk children. In 1991, however,
universal screening for all children under the age of 6 years became policy, except in
areas that could prove they had no lead poisoning problem. Today, besides recom-
mending screening in high-risk communities, CDC is examining  strategies  for
screening in low-prevalence communities, as well as analyzing questionnaires to
identify high-risk children in low-risk communities. (The ABLES program was
described earlier in this breakout session.)

       In addition, CDC studies the sources of lead, assisting in  EPA's study of
contaminated soil (which demonstrated only a modest benefit from soil removal and
replacement in  inner-city areas); investigating outbreaks of lead poisoning linked to
the use of leaded ceramic pottery and tableware; and evaluating the risk of folk
remedies popular in Hispanic and Asian communities. In California, after 40 children
were found poisoned in 1992, the folk remedies were found to have a high lead

       CDC has set year 2000 objectives that no U.S. child shall have a blood lead
level greater  than 25 /*g/dL and that no more than 500,000 U.S.  children will have
blood lead  levels greater than 15 /*g/dL. For inner-city, low-income black  children,
the objectives are that no child shall have a blood lead level greater than 15 jig/dL
and the prevalence of blood lead levels greater than 25 /tg/dL shall be 37,000 or
fewer. To achieve these objectives, CDC needs communities to develop primary
prevention  activities and for research to proceed.

       In response to a question about incineration,  Dr. Rosenblum said that
ATSDR, a PHS sister agency that deals with industrial, wastes, and Georgia Tech's
Lab Line could provide information on soil testing. When another participant asked
about provisions for testing older children and adults, it was pointed out that CDC's
limited funds are used for younger children because they are at higher risk.

       Dr. Marinelle Payton of Harvard Medical School first described an important
prospective cohort study by Bellinger and colleagues that looked  at early development
and low-level lead, stratified by social class. The results of the study suggested the
linkage of lead  problems to poverty could be reversed.  The speaker then emphasized
that research  should serve the needs of children and provide support to community
health centers. Researchers should become  partly accountable to the patients, who
should no longer feel like  "guinea pigs."

       One pilot project linking a community health center and an academic center
that received  some support from ATSDR in 1991 sought to evaluate the adequacy of
lead prevention strategies through a retrospective cohort study of children from the
Harvard Street Neighborhood Health Center located in  the highest risk area for

 Symposium on Health Research and Needs To Ensure Environmental Justice	

 childhood lead poisoning in Boston, MA. The research questions included whether
 lead-poisoned children benefit from participation in Head Start and remedial educa-
 tion; the magnitude of that benefit compared with that for children with low to no
 lead poisoning; how the benefits of early childhood remedial education programs
 compare with benefits from primary prevention and secondary therapy; whether these
 strategies increase the likelihood of a child participating in early intervention pro-
 grams; whether the programs are adequate to meet the needs of high-risk communi-
 ties; and what further collaborative initiatives between health care providers, educa-
 tors, and other environmental professionals might mitigate, if not reverse, the
 neuropsychological damage to young children with histories of lead poisoning.

        In response to discussion questions, Dr. Payton said that there are not enough
 Head Start and remedial education programs; she does not know why upper-income
 children had better reversal of lead effects; and she hopes that eventually agencies like
 CDC and EPA will be able to establish enforcement standards for community wastes.
 Concerning a Wall Street Journal article that suggested that lead poisoning was not a
 grave problem, comments included an analogy with tobacco because a few scientists
 will differ from the majority by saying that cigarettes do not cause smoking. Further,
 the second and third generations of studies absolutely confirm and corroborate
 previous data, and the "Alliance" prepared a response to the Wall Street Journal

        Session participants were interested in opportunities over the next 10 months to
 get the Federal government to finance the cleanup of lead hazards, including a bill
 moving through Congress for a "polluter pays" tax on lead that could generate $1
 billion per year for the cleanup of lead-contaminated soil and lead hazards in houses.
 This bill—the Lead  Abatement Trust Fund Act, or Carbin-Bradley bill—might be
 rolled into health care reform.

        One attendee reported on a study that analyzed data from children tested in the
 first and second grades 15 years ago and followed until they turned 18. The study
 found that the differences attributable to lead carried over across time: The individuals
 who had higher levels of lead were more likely to have reading difficulties, to have
 failed school, or to have had problems with the law.

                                                              Breakout Sessions


       Dr. Marilyn Plngerhut of NIOSH said that making a distinction between
environmental and occupational exposure to toxins is incorrect. However, workers
generally suffer a higher exposure than other people in the community. The reason is
that workers may be employed for as long as 5 to 10 years with or near a hazardous
material that may also contaminate the community. As a comparison, ordinary
individuals have about seven parts per trillion (ppt) of dioxin in their bodies from
environmental exposures, mostly from food, but at the last date NIOSH studied
occupational exposure concentrations in chemical workers, the concentrations were as
high as 2,000 ppt. One individual was estimated to have a concentration of
30,000 ppt.

       Estimates of cancer because of workplace exposures range from 4 to 20
percent of all cancer incidents, and NIOSH estimates that 3 million to 9 million
workers are potentially exposed to carcinogens. OSHA regulates the level of exposure
for humans for 24 carcinogens; NIOSH recommends that another 106 chemicals be
controlled as carcinogens. Unfortunately, occupational  cancer studies cannot account
adequately  for the discrete influences of onsite- chemical exposures, smoking;,  socio-
economic status factors, and access to medical care on  worker health.

       There is  a paucity of adequate studies of people of color. A recent review of
cancer studies published over 20  years found only 14 percent of these studies focused
on women, 7 percent on men of color, and 2 percent on women of color. Yet, the
U.S. workforce is composed of 46 percent women and 18 percent people of color,
with the latter concentrated in blue-collar occupations where both skilled and  unskilled
minority workers incur risks of exposure to occupational carcinogens.

       National  statistics are not  adequate for studies of minority groups, because the
only readily obtainable national rates are for whites and nonwhites—categories that
are not meaningful for particular  ethnic groups. For example, to obtain a comparison
population to study the effects of radon exposure on Navajo uranium miners,  NIOSH
had to use nonwhite death rates from New Mexico and Arizona, where Native
Americans compose the principal nonwhite population. In another study, NIOSH was
not able to provide a definitive statement on whether there is a relationship between

 Symposium on Health Research and Needs To Ensure Environmental Justice	

 antimony and heart disease in a Hispanic worker group, because there is no Hispanic
 category in the data collected on U.S. mortality rates.

       Recommendations for improving health statistics among minorities were
 published in a May 1992 PHS report. Adequate and appropriate racial and ethnic data
 must be collected and recorded in work, medical, and other records that track
 exposures in the workplace. Recently, NCHS recommended that all of DHHS use the
 same five racial and ethnic categories for uniform data sets: American Indian,
 Eskimo, or Aleut; Asian or Pacific Islander; Black; White; and Other. In the case of
 ethnicity, Spanish descent would include options for Mexican-American, Cuban, and
 Puerto Rican origins. The current health care reform effort may present an oppor-
 tunity to develop systems that link employer data to medical data while effectively
 addressing privacy issues. In addition, people of color must become involved in the
 decisionmaking process. With these changes, we may be better able to evaluate the
 distribution of cancer in minorities and its relationship to environmental exposures.

       Dr.  Tom Sinks, an environmental cancer researcher from CDC's NCEH,
 provided the following data. In 1973 and 1974 the difference in age-adjusted mortality
 rates for all cancers between whites and nonwhites was 23 percent. By 1990 this
 difference had climbed to 35 percent, with mortality rates for whites and African
 Americans growing by 6 and 16 percent, respectively. The largest racial differences
 appear in cancer survival statistics. The 5-year survival rate for all cancers combined
 for African Americans is 39 percent; in contrast, whites have a 54 percent chance of
 surviving 5 years.  This difference in cancer survival is influenced by several factors,
 including early detection, barriers to health care, and health care delivery.

       Each type of cancer has a unique set of causal factors. While the single most
 preventable cause of cancer is tobacco (30 percent of all cancers might be avoided by
 eliminating  exposure to tobacco), studies are needed to evaluate the risks of tobacco
 exposure and use among minority and underserved populations. Quality data on
 environmental exposures to carcinogens—not just data on the proximity of workers to
 hazardous industrial waste sites—also are needed and should be obtained by objective
 measures  that capture actual exposure. Data on human tissue concentrations for two
 potential carcinogens, PCBs and DDT, show significant differences in body burdens
 between whites and nonwhites, that is, in how much their bodies take in and retain.
 More differences such as these need to be identified. When exposure levels are found
 above an acceptable range, preventive measures must be taken to avoid the further
 exposure of individuals, regardless of race, ethnicity, or socioeconomic status.

       Dr. Peter DeFur, a scientist from the Environmental Defense Fund, described
 environmental protection from the government's view as  a distinctly human issue
because the government is not concerned with carcinogens in fish or wildlife.  Since
our knowledge about cancer is limited, we often take an overprotective approach in
controlling carcinogens. For people of color, however, a protective course may be
warranted, particularly as occupational and environmental causes of cancer are the
same when people cannot separate where they work from where they live. Indeed,

                                                                Breakout Sessions
people of color may live within a mile of hazardous waste disposal sites or in the
backyards of chemical plants. For these communities, the issues of occupational
health and environmental health are the same.

       Use of quantitative risk assessment to protect people from exposure to toxic
agents raises additional problems because some communities, especially those with
people of color, have become concerned about the motivation of government agencies
and Congress in promoting the risk assessment process. Eric Mann from a Los
Angeles neighborhood center focused on this when  he recounted that when the
Right-to-Know law (the 1402 Rule) was passed in Los Angeles, companies were
allowed to comply with orders to reduce cancer risk by erecting a taller smokestack,
thereby diluting their emissions and blowing them out upon more people. This
procedure was acceptable because of the reduction in individual exposure and risk
even though more people were now exposed to emissions albeit at lower levels.

       One of the inherent problems with risk assessment is the assumption that
decisions can be made for one species (humans) based  on studies conducted with
another (animals). When a substance affects one or  two animal species adversely, we
can speak of a high probability that it may also affect humans. At present, however,
the onus is on public officials to document specific  agent-related human mortality,
which means that it will take 20 years for adequate  data to become available.

       A proposed alternative to risk assessment relies on five principles of decision-
making: (1) employing alternatives analysis instead  of risk assessment; (2) making
decisions by consensus, with the affected community represented;  (3) ensuring that
information flows in multiple directions among the persons and groups making the
decision; (4) sharing information and roles among process participants; and (5)
achieving a degree of cooperation among all parties that makes the whole greater than
the sum of its parts. Nevertheless,  risk assessment can be helpful. If risk assessment
had been conducted on lead  exposure, researchers would have been aware decades
ago that low-level exposure is a great threat to childhood health.

       Community participants urged scientists at NIOSH and other agencies to
identify (1) which chemicals they would ban right now; (2) which chemicals they
judge to pose the lowest risk to the community; and (3) how cancer, lupus erythe-
matosus, and other harmful health effects are associated—if at all—with exposure to
specific environmental toxins. They were concerned about how much exposure
individuals receive during  emission of benzene, which  at a certain level causes
leukemia,  and about the problem of ignoring synergistic relationships, such as those
between paniculate matter and cigarette smoke as a cause of lung cancer. A trend to
watch is an apparent increase in the prevalence of nonsmoking-related lung cancers,
as noted in recent scientific reports. Los Angeles, CA, has  an excellent tumor registry
that could serve as the basis for studying the incidence of lung carcinoma in non-
smokers. An accumulating body of evidence suggests that chemical carcinogens may
be involved, to an increasing degree, in the development of lung cancer.

 Symposium on Health Research and Needs To Ensure Environmental Justice
        Another issue raised involved the problem of reaching the incorrect assumption
 that no further work on a suspected carcinogen is necessary. This scenario could
 happen if insufficient worker mortality data are available for a true test of the effect
 of a substance in the workplace. Then, despite a substance being identified as causing
 cancer in animals,  human exposure to it is allowed based on false assumptions.
 Because of all the possible intervening variables and cofactors in human studies, we
 must have animal studies.

        To explain why not everyone exposed to a chemical develops cancer, the
 scientific community is now looking for biomarkers—that is, biological evidence in
 the human body (blood, skin, urine, hair, and fingernails)—that show whether a
 change has occurred as a result of a particular environmental exposure. Biomarkers
 could be used to indicate susceptibility.

        One attendee pointed out that a substance that causes cancer in animals will not
 necessarily hurt humans. Today, few lexicologists  would say that saccharin, which
 was banned in the  1970s, causes cancer in humans. Another attendee commented that
 there is a big difference between absolute scientific proof that a substance is a
 carcinogen and some evidence that it can cause cancer. At the policymaking level,
 emphasis could be  placed on primary prevention, increased frankness between
 scientists and communities,  a reduction in the number of equivocal studies, a require-
 ment that manufacturers prove in advance the safety  of substances, and a reduction in
 exposure levels of  substances of concern even before academic research on them is

        Another concern was that government sanctions against companies are often
 appealed and  nullified,  despite the fact that the intent of the sanctions was worker
 protection, particularly  when polluting industries are clustered in the least advantaged
 communities. For many communities, the issue often comes down to electing legisla-
 tors who  "see the world the way people at this conference see it."

       Attendees also considered important the failure to link disabling conditions to
 occupational exposures  and the need to study the link between the compensation
 system and causes of death. For example, data on silicosis from sandblasting, mining,
 and metallurgy show that after workers file for compensation benefits, many exhibit
 dramatic increases in death rates—specifically, from  tuberculosis at a rate 50 times
 greater than the national average when adjusted for race. Yet, in one case examining
 cancer deaths for 509 people with silicosis, these workers had more than twice as
 much cancer of the intestine. Similarly, rates of cancer of the respiratory system,
 lung, and prostate were elevated. (Another presentation at this meeting showed a
 breakdown by industry of the causes of worker deaths from tuberculosis, respiratory
 diseases, cancer of the lung, and cancer of the large  intestines. Risk rates vary  by
 cause of death, as well  as by major industry.) It appears that silicosis results in a
 variable risk of disease  over time. For example, the risk for tuberculosis remains high
 for 10-20 years, then diminishes. Physicians need to be informed that when someone

                                                                   Breakout Sessions
is diagnosed with silicosis, the risk for tuberculosis is high soon after the disease is
diagnosed and that risks for various cancers will grow over time.

                                                              Breakout Sessions


       Dr. George Alexeeff of the California EPA called guidance levels the
 foundation of environmental  safety in the community. Based on a chemical's impact
 on overall health and on morbidity and mortality, these values are used to determine
 the impact of a potential release of a specific chemical and give enforcement agencies
 the authority to act. Communities may use the Immediately Dangerous to Life or
 Health standard, which is defined in  terms of the maximum concentration of a
 substance from which, in the event of respiratory failure, an individual could escape if
 exposed; the Emergency Response and Planning Guideline standard that was set by an
 industry-based group to protect "most individuals in the general population"  (which is
 not explicitly defined); or the NAS standard for military personnel and some civilians,
 based on the wide  susceptibility to each substance of people aged 18-25 years.

       To be able  to collect information about the impact of a chemical release and
 establish a relationship between exposure and  any subsequent illness, communities,
 agencies,  and CDC need methods to  measure  chemical releases in the first 24-48
 hours after a release. The California  EPA has used this kind of information to show
 that chemical-induced asthma may result from environmental exposure.

       Scientists also need to know more about the impact of long-term exposures.
 Current standards do not test for the  long-term impact of chemical residues, in  part
 because equipment may not be  able to detect small enough amounts of residual  toxins
 to determine whether residue was left from a release, possibly trapped in walls,
 furniture, or furnishings. For example,  18 months ago, when a tenant died after
 reentering a fumigated apartment building, people first realized that substantial
 quantities of methyl bromide could be trapped inside the walls.

      Robin Bryant, a refinery worker and union health and safety trainer, noted
 that people who work in chemical industries also generally live in nearby communities
 that are vulnerable to industrial emissions. The national Process Safety Manufacturing
 standards (PSMs),  released in 1992, were designed to eliminate catastrophic  acci-
 dents, such as the one in Bhopal, India, in 1984 and  the Phillips explosion in 1989.
The standards' 14 sections embrace every facet of plant operations and mandate
employee involvement. To ensure that companies comply with this mandate and train

 Symposium on Health Research and Needs To Ensure Environmental Justice	

 labor members to understand the standards, the Oil, Chemical, and Atomic Workers
 International Union (OCAW) developed its own action plan to implement the stan-
 dards, as well as its own approach to training.

       The 1992 standards call for a written plan that details employee participation.
 OCAW wants union representatives  to be part of the plan, with the goal of having an
 equal number of union members and management work together on each committee
 that oversees the PSMs implementation steps. The standards also call for making
 process safety information available; identifying, evaluating, and controlling any
 hazards in the process; writing operating procedures that provide clear step-by-step
 instructions for safely conducting the activities involved in each process; ensuring that
 the training operator on each unit develops operating procedures that are reviewed
 annually, with input from the workers;  training each operator in an overview of the
 process,  as well as in any site-specific operating procedures; training others in their
 units by  the first people trained, with regular retraining scheduled; similar training for
 contractors; performing a pre-startup safety review for new and significantly modified
 facilities; regularly maintaining, inspecting,  and testing equipment for mechanical
 integrity; signing "hot work" permits signifying  safety before welding, burning,
 grinding, or using an ignition source; and conducting investigations within 48 hours of
 any accident or near-miss.

       A PSMs watchdog provision  for compliance orders requires employee verifi-
 cation every  3 years that all  required practices and procedures are being carried out.
 OCAW wants an ad hoc committee to develop a checklist to determine routine
 compliance on an annual basis. OCAW, along with the Labor Institute, has already
 developed a Jobs and the Environment curriculum that will be supplemented by a
 section on  how to apply OSHA and  EPA proposed rules. The curriculum can be used
 to train workers and people in  the community.

       In response to  questions .about .time frames, Ms. Bryant indicated that they are
 different for different  sections of the PSMs; 1996 is the target year for 100-percent
 completion. Companies that  enacted  safety measures before the PSMs came out have
 been allowed some leeway in achieving 100 percent compliance.

       David Hastings of the Chemical Manufacturers Association (CMA) said that
 currently CMA represents 180 companies, or 90 percent of the productive capacity
 for basic chemicals in the United States. The Bhopal accident  in 1984 was a wake-up
 call for the chemical industry to recognize the community's right to know and develop
 the Community Awareness and Emergency Response (CAER) program, which led to
 a coordinated emergency plan to deal with incidents at each facility. A 1988 study
 showing  that the public had a negative perception of the chemical industry provided
 further impetus for change.

       Key elements of the CAER program include several codes of management
practices: distribution, product stewardship, employee health and safety, pollution
prevention, and process safety  (catastrophic accident prevention). Not all member

                                                                Breakout Sessions
 companies participate in the code of management practices, but the industry has
 established a voluntary initiative to exert internal pressure on member companies to
 do what is right. In many instances, CAER codes exceed current safety laws and

       As part of public and employee participation, a public advisory panel meets
 regularly with CMA to serve as a sounding board and voice its concerns. For
 example, when the panel advised that a responsible CAER program needed to go
 beyond self-evaluation to third-party verification, the chemical industry began working
 with the panel to design a system that  would allow for this aspect. The CAER code
 requires facilities to have employee and community outreach, a coordinated emer-
 gency response plan, regular evaluation of the effectiveness of these plans, and active
 participation in a local community-based advisory panel, coupled with a policy of
 openness that allows people to enter industry facilities.

       CMA's involvement with EPA includes its support of the way the Clean Air
 Act extends process safety management (worker protection) to the community and
 combines process safety (prevention) with emergency response and hazard assessment,
 also extending them to community  protection. CMA has a 1-year-old  industrywide
 worker operations training program, involving a series of workshops, based  on final
 OSHA regulations.

       Mike Leedie, a board member of West County Toxics Coalition (WCTC),
 Richmond, CA, said that Richmond has been the site of several industrial accidents.
 These incidents include the explosion of the Chevron refinery, which  dumped 60 tons
 of catalyst dust all over the community, and the explosion of the General Chemical
 facility. WCTC believes that both problems could probably have been prevented if a
 community technical advisor had been available to look at the issues,  focus on
 concerns, and make recommendations. Further, when WCTC called for access to
 information,  it found that the standards described earlier in this breakout session were
 not being reviewed with the kind of public scrutiny necessary.

       Electronic technology offers opportunities for widespread data sharing with
 other communities while keeping costs low. Computers also permit networking among
 activists across the country. People in communities who have not previously had such
 access need training in this technology.

       As the result of a California EPA regulation concerning the need to inform the
public, WCTC  receives a risk management prevention plan and an offsite conse-
quence analysis of some facilities, but  this  material may be too technical for the
general public.  Consequently, enforcement is not strict enough. Further,  current
guidelines do not have adequate penalties for industries that do not comply nor are
they specific  enough to allow communities to control the public review processes that
are part of risk management prevention plans.

Symposium on Health Research and Needs To Ensure Environmental Justice	

       An attendee mentioned monetary settlements paid by both Chevron and
General Chemical to the Richmond community that were challenged by Chevron.
WCTC worked with the community to get a number of conditions placed on Chev-
ron's operating permit, including a $60-million settlement package over the next 30
years that was earmarked for community involvement projects,  including a community
technical advisor. This condition was opposed by the company; Chevron eventually
had the monetary award reduced to $4.5 million.

       Another attendee asked if the speakers thought that industries that pose health
risks and are in or near residential areas have an obligation to contribute to their
communities, even when there are no immediate and pressing health problems.
Mr. Hastings answered that this obligation  was part of the CAER initiative. He also
noted that ongoing rulemaking by EPA will affect training and research, as well as
140,000 chemicals, and will cost the chemical industry $10 billion to $15 billion over
the next 10 years, according to agency estimates. A third attendee said that EPA
could make a big difference in worker and community participation—for example, by
requiring a technology options analysis in which a facility would identify all potential
ways of preventing a chemical accident—and that the role of State governments in
overseeing industrial compliance needs to be considered.

       When some session participants from West Virginia suggested management did
not take community concerns seriously, Mr. Hastings said that CMA  will soon be
issuing new guidelines that restate the need  for independence by community panels.
Other queries concerned whether companies would be required to give panels
technical assistance and access to detailed documentation about safety and whether
primary prevention of accidents could be emphasized. Mr. Hastings agreed to meet
with sponsors of a clause for the Accident Prevention Rule that would require
manufacturers to describe their full technological capabilities to their communities and
anticipated that CMA would submit comments to EPA within a week.

       Other needs, as stated by attendees, included support by EPA of stringent
public protection measures to inform people of risks in communities with plants that
have catastrophic potential; to activate the Chemical Accident Safety Board; to require
an offsite consequence analysis and equipment designed to minimize any kind of
offsite release; to ensure more worker participation in unionized as well as nonunion-
ized industries; to train workers of color, including non-English-speaking workers;
and to make compliance mandatory.

       An attendee from the Labor Occupational Health Program stated that she has
no faith in voluntary compliance after an experience in which none of California's
plating companies let her organization conduct training and one facility refused to
spend a small sum so training sessions could be given in Spanish. Consequently, an
untrained Spanish-speaking  worker went into a confined space and passed out;
1 rescuer died and 16 other people went to the hospital.

                                                               Breakout Sessions


       NIOSH defines surveillance as "the systematic, ongoing collection of relevant
 data and their constant evaluation and dissemination to all who want to know for the
 purpose of prevention." The first goal of surveillance is to identify new opportunities
 for prevention. For example, nurses trained in occupational epidemiology have been
 placed in 10 State health departments to (1) find out what health problems exist; (2)
 tell NIOSH what the problems are; (3) collect pertinent information; and (4) act on
 the knowledge acquired.

       An example of the role surveillance plays in identifying health problems was
 in an investigation of an outbreak of gastroenteritis among agricultural workers that
 turned out to be nicotine poisoning from cutting wet tobacco. Another example of
 surveillance concerned occupational bum injuries, such as getting burned by contact
 with hot oil from deep fat fryers in fast-food restaurants.

       The second goal of surveillance is to define the scope of a problem. For
 example,  8 years ago only a few States required reports on adult blood lead levels;
 today, 30 States do. The data reveal that most individuals develop lead poisoning
 from occupational exposures, a few acquire lead poisoning from hobbies,  and workers
 bring lead home from their workplace and expose their children to it.

       The third goal of surveillance is to define trends; that is, are conditions
 improving, worsening, or staying the same? The fourth goal is to target prevention

       Among the surveillance studies ATSDR is conducting in minority commun-
 ities, the first  (and still ongoing) study was of a lead smelting operation open for
 about 50 years in west Dallas,  TX. Not only were proper bag houses and insulation
 not in place at the facility, but  the community was exposed to lead from the smelter.
Five percent of children under  age 6 years living nearby showed elevated  blood lead
levels in 1983. The first remediation steps involved removing contaminated soil from
residential and public areas  and replacing it with new soil and grass. Concerns arose,
however, that  the cleanup was  causing further lead exposure among the children. In
May 1993 the  smelter site was  added to the EPA's NPL.

   _               .                  .                                     _

Symposium on Health Research and Needs To Ensure Environmental Justice	

       Currently, the Dallas Health Department, along with EPA and ATSDR, does
surveillance of children ages  6 months through 6 years who have been residents of
west Dallas for more than 3 months. Some area residents have helped publicize the
study, but they were not involved in its design. Additional surveillance activity is
focused on blood lead levels of children in  two communities with similar demo-
graphics but differing in their exposure to lead, based on air emission control
monitoring. Possibly, the results will help EPA validate a mathematical model for
predicting a child's blood lead level in regions with no surveillance, where health
officials know the key independent variables, such as the level of paint, the existence
of paint chips or dust, the level of soil contamination, and the tap water  lead level.

       With  newly  available measurement techniques, the west Dallas researchers  can
identify the amount of lead stored in the bones of children residing near  the smelter.
This important knowledge can be instrumental in considering effects on the children's
health when they reach  adulthood.

       A second ATSDR project, in Texarkana,  TX, involves a subdivision built on
the site of an abandoned creosote wood-operating facility. This site was placed on the
NPL in 1984. Soil and ground water were contaminated with  aromatic hydrocarbons,
benzopyrene, naphthalene, fluorine, and pyrene.  A health study initiated in 1990,
comparing residents with a control community, showed that the residents had three
times as  many  skin rashes as the controls and more problems becoming pregnant.
Study results, however, did not support the residents' perceptions that they had higher
rates for cancers and adverse pregnancy outcomes.  A limitation of this study was that
investigators looked at self-reported symptoms that were not validated with medical
data. Nor could the level of exposure be determined because the absorption of toxins
into the skin could not be measured. To show relationships between adverse health
effects and exposure,  scientists need more reliable biological indicators capable of
detecting the low levels of exposure that are likely to occur in residential commun-

       Improved surveillance mechanisms are particularly important for low-wage
workers, low-income communities, and communities of color—groups with higher
risks for occupational disease than  the general population, but for whom the available
data on occupational disease are very limited. Moreover, the published evidence
indicates that surveillance data do not adequately include these populations. For
example, minority populations in New York are clearly underrepresented at occupa-
tional health  clinics compared with their representation among the State's population.

       Disease, disability, or untimely death that is likely to be work-related should
make a physician consider and explicitly rule out occupational or environmental
etiology in a particular patient. Such events are signs of a failure in prevention and
suggest a need for substitution of a less toxic agent, engineering controls such as
ventilation systems, or the use of personal protective equipment.  Although physicians
could play a critical role in surveillance research, they appear to  be slow in respond-

                                                                 Breakout Sessions
ing, need better training in occupational medicine, and are unaware of how frequently
their patients are exposed to toxins.

       To one Iowa City questionnaire, three-quarters of the respondents reported
exposure to at least one toxic agent and almost one-third of the respondents to at least
four agents. Boston and New York City data also support the prevalence of occupa-
tional disease caused by toxic exposures and the low recognition of these problems by
physicians, with the exception of Bellevue Hospital in New York City. Bellevue
conducts occupational medicine case conferences; has started a physician-based
outreach program; recently has added a Chinese staff member to help build an Asian
community base; and is experimenting with outreach to community organizations.

       There is a perceptual problem regarding community-based health research.
Researchers often look at well-defined and limited problems, while workers and
communities view sets of problems more globally. Bringing the two groups together
with a facilitator might enable each group to air its respective viewpoint and thereby
lessen the misunderstanding between the groups, as well as the anger and distrust that
communities often harbor against well-meaning researchers. NIEHS should consider
funding these focus groups.

       Unions are now trying to have ongoing surveillance become part of OSHA
standards, with requirements  that employers conduct it and permit their interventions
to be evaluated.  In a parallel  situation, surveillance activities might occur in school-
based health clinics and other community-based sites, especially in low-income,
minority communities. However,  surveillance needs to go hand-in-hand with informa-
tion dissemination. For example,  how many of the 17,000 workers who are lead-
poisoned in the United States are  aware of the seriousness  of their condition? The
Labor Occupational Health Program at Berkeley, CA, has  developed programs for
low-literacy or non-English-speaking workers at small radiator shops and at "mom-
and-pop" smelters, but project jorganizers have-not .yet been .able to convince the
owners of such establishments to  educate their workers.

       During discussion, an attendee challenged the speakers' emphasis on surveil-
lance of  sick workers rather than  on surveillance of hazards. He also complained of
the difficulty the public has in obtaining the data that the government and private
sector have collected on exposed workers and asked for concrete recommendations
based on the data. Others agreed  that the data, even if flawed or incomplete,  should
be available to the community for evaluation and that it is  easier to get access to
community data than to occupational data. A panelist, who noted that in California
only about 1 percent of workers who are exposed to lead are under surveillance,
agreed that prevention may be more effective if it combines surveillance of exposure
with surveillance of disease.

       All speakers and attendees expressed  consensus at this point that researchers
should focus not only on mortality, morbidity, and biological markers but also on

Symposium on Health Research and Needs To Ensure Environmental Justice	

prevention and intervention strategies. The problem, they concluded, is that the whole
system for intervention needs more support.

       The difficulty of establishing a link between a health effect and community
exposure was again noted, using the example that researchers would never have found
the benzene-leukemia connection had they looked  only at the "Love Canals." The link
was identified using occupational exposure data. In shoe factories in Turkey that used
100 parts per million of benzene, workers were getting leukemia. At this point,
extrapolations to communities are necessary because, as mentioned earlier, the
technology is still not available to document low-level exposures. To perform
community studies now with inadequate tools is dangerous, because the results are
liable to be misinterpreted as negative instead of inconclusive.

       The primary problem in conducting surveillance and designing and testing
interventions is a lack of funding. Attendees and panelists disagreed, however, on the
source of funding. One attendee suggested that the government should pay for the
additional studies that are being demanded. In turn, a panelist suggested that com-
panies should pay for the studies but should not conduct them. An attendee noted that
EPA's experience shows that getting industries to  pay for studies can be a long-term
process.  Another attendee suggested that  10 percent of grant monies should go to
community involvement and education.

       A panelist commented that the symposium  has focused on a new paradigm,
one based on community involvement where the community works  with researchers as
an integral part of the team. To reach that ideal, he suggested that an effective means
of community accountability be explicitly built and written into grants. When a grant
team visits a community, it would bring not only molecular biologists and epidemiol-
ogists, but others who understand community participation and who would formally
review how well a facility had related with the community, listened to its needs, and
acted on them. He defined the paradigm in terms of.process—specifically, a modus
operandi that would integrate the community into the process, where the community
helps to formulate any hypotheses, gather the data, interpret the results, and translate
research  into action.

       Also suggested  was that even basic science research that is not connected
directly to community exposures should earmark part of any grant monies for
community education. However, many bench scientists  would find accepting this
notion difficult even though the concerns  of a community could potentially become a
focus for their basic research.

                                                             Breakout Sessions

       Rose Augustine of Tucson, AZ, shared some of her experiences in obtaining
 technical assistance grants (TAGs) for remediation of Superfund sites. She asked
 asked other session participants to share their frustration and difficulties in obtaining
 these grants and their suggestions for making the application process easier for other
 communities. For example, the application process can take more than a year to
 complete, which often results in communities having to refile all paperwork.

       Attendees asked how EPA was cutting through the Federal procurement
 requirements that often force groups to hire a consultant. Even if regional EPA  staff
 provides technical support on a grant application, grants for community groups are
 required to follow the same procedures as those for other groups (e.g., universities).
 Reimbursable grants are another problem, because many communities lack the seed
 money to get started and cannot advance funds-and wait for reimbursement.
 Expanding what a TAG award will fund (without taking money from the desperately
 needed technical experts) would enable groups to pay for someone to help organize
 the community, bookkeepers to help manage funds, and people to help them account
 for in-kind contributions.

      In response to the suggestion that the 20 percent in-kind requirement be
 dropped, an EPA speaker gave the example of a group that had high in-kind contri-
 butions—a match of around 45 percent. Another community speaker reported that her
 group also had in-kind contributions, but lacked the mechanism to account for them.
 Further, although EPA provides for a waiver of this  requirement for economically
 deficient areas, not all community groups are eligible for this waiver.

      Three factors can help community groups successfully obtain funds. First,  they
 should be familiar with the community and its leadership and resources. For example,
groups can use adult education programs where there is money (as a result of the
Economic Opportunity Act of 1964) and can very inexpensively use the media and the

Symposium on Health Research and Needs To Ensure Environmental Justice	

"information highway." They may have to build democratic involvement, especially
in communities such as those of African-Americans, who have not traditionally been
involved in government.

       Second, community groups or individuals must be specific about their needs
and be prepared to present hard data. They should approach decisionmakers for help,
where necessary, and seek out ways to evaluate study procedures and findings.
Groups must determine where  to go to find the affected individuals.

       Third, knowledge is power: Community members need to be familiar with
every applicable statute, regulation, policy, and procedure. Put simply, if one does
not follow EPA's policies and procedures, one will not get money. Organizations or
individuals other than EPA (e.g., Members of Congress or environmental groups)
may be able to give assistance.

       EPA representatives have implemented administrative changes to streamline
the application process; expanded a technical assistance program  to help prospective
grant recipients understand EPA rules and regulations, relevant terminology, and site
remediation needs; activated the National  Environmental Justice Advisory Councils;
expanded reimbursement programs in an effort to provide seed money—up to
$1,000—for out-of-pocket expenses; and assigned environmental justice coordinators
(EJAs) to each EPA region. Changes made in the TAG application process now allow
TAG funds to be used to hire a grant administrator to help with bookkeeping and
management of grant funds. A revised, simplified TAG application comprised of two
booklets will be available in the near future.

       Speakers advised community groups applying for EPA grants to understand
technical terms; understand and follow EPA rules, regulations, and procedures; be
knowledgeable about the site; hire a technical advisor who meets the group's needs;
disseminate information widely through meetings, the media, newsletters,  and
electronic mail; and use nonprofit status to obtain in-kind contributions, such as
donated supplies, volunteer telephone calls, bookkeepers, advertising, and free

       Alternative suggestions  offered by  attendees included that EPA develop a panel
of environmental support personnel who are able to recommend community-friendly
consultants; change or tailor rules, regulations, and requirements so citizens' groups
do  not have to compete against other groups or organizations, such as universities,
that generally have significantly greater resources,  personnel, and expertise; establish
and implement tasks for the newly forming Environmental Justice Advisory Councils
(e.g., oversee a national list of environmental consultants and improve communication
strategies between regional EPA offices and community groups); increase openness
for dialogue and exchange between EPA,  other Federal agencies,  and community
organizations; encourage government agencies to use advertising  and  newspapers to
notify communities about cleanup efforts,  training sessions, seminars, and such;
identify one EPA staff member per region to serve as a community activist to work

                                                                Breakout Sessions
with community leaders and help them access the system; remove the 20 percent
in-kind requirement and initiate legislation to allow direct funding to citizen groups by
EPA; increase EPA's commitment to involve and educate the community; and
improve enforcement of existing laws, policies, and regulations.

       One attendee noted that even though EPA has existed for 25 years, the
majority of national changes come from regional coalitions. Region V, for example,
has for years been the source of national toxic policy. Although individuals and
community groups may work for change from the outside, change must also come
from within EPA. EPA should consider why it has more guidelines on $50,000 grants
than on $4-million cleanup projects. In order for EPA to change, its staff must play a
crucial role.

                                                            Breakout Sessions

       This session addressed both "what has worked" and "process" issues. Maurci
Jackson of Parents Against Lead (PAL) in Chicago, JL, established this group after
her daughter was poisoned by lead, once by accident, but again because of inappro-
priate in-house abatement procedures that education could have prevented. After
difficulties with agencies in Illinois, she began to look elsewhere for information on
lead-related issues. Her group's mission is to tell people, especially the minority
community, about the dangers of lead poisoning, including its specific adverse effects
and its preventability. To educate, PAL uses the media, especially regular and
creative use of television. Persistence and patience are important to get the media to
respond. For example, it took 18 months to have aired a story on a child with blood
lead levels nearly 11 times the safe level.

       Responding to queries, the speaker-said that-her-group's next targets are
obstetric units in hospitals and that she recommends seeking company donations of
encapsulating paint. She also named three ways local health departments could
communicate better: (1) have inspectors distribute relevant information to parents
during  a lead inspection visit to a home, (2) include information on proper lead
abatement  procedures  and warnings for pregnant women when sending information to
parents of  affected children, and (3) provide parents with information on lead at
city-sponsored events. Other session participants stressed the need to alert other
residents when one child in an apartment house is treated for lead poisoning and to
have wider spread inspections of the building.

      Testing should be done immediately, because lead stays in the blood xonly 45
days before moving to the bones and organs, where it is stored. PAL helped pass a
State law mandating testing before children enter school, but enforcement has been a
problem. There are also problems of deciding whether to exclude children from
school until they have the test and of ensuring that poisoned children are not stigma-
tized. With mandatory testing, the number of reported cases has increased.

 Symposium on Health Research and Needs To Ensure Environmental Justice	

       Other advice given by the speaker is to leave intact walls alone and not to
 disturb or replace a suspect wall, and to let leaded water run before drinking or using.
 A water-testing kit  can be bought. Greater attention should be placed on the dangers
 of lead,  even in the presence of what appear to be more immediate dangers, such as
 rats. For questions  about employment exposure, PAL refers individuals to OSHA.

       Dr. William Sanders of EPA Region V commented on efforts of the Federal
 government to unite agencies on the issue of lead, the new availability of HUD funds
 for lead  abatement  in low-  and moderate-income private homes, and on Chicago's
 progress, which includes testing more children and making more money available.
 New regulations require water suppliers to test drinking water, including that in the
 home. The attendees were reminded that abatements done incorrectly may exacerbate
 lead exposure and push lead levels in children's blood even higher.

       Attendees expressed several concerns, including whether funded agencies
 collaborate with existing community groups; that the monies available cannot meet the
 needs; that initiatives  to force lead manufacturers to take some responsibility for
 reparations are needed; that sludge from sewage treatment plants releases lead when
 incinerated; and that government bureaucracy makes grassroots organizations go
 through  a great deal to obtain funding.

       Monica Moore of the Pesticide  Action Network (PAN) then spoke about
 pesticide reduction, noting that the key  problem with pesticides is not a lack of
 information,  but rather finding alternative products that perform as  well. PAN works
 internationally on the  issue of methyl bromide, an extremely toxic fumigant widely
 used in the United States for, among other uses, termite infestations and on straw-
 berries and tomatoes.  Its banning has been urged for years by labor organizations.
 Now listed as an ozone depleter, methyl bromide must be phased out by the year
 2001. PAN has joined a coalition aiming to prevent replacement of methyl bromide
 by other toxic chemicals, even if they do not deplete the ozone, and to propose
 alternative methods that do not require chemicals.

       PAN pools fundraising, administration, and other resources  for its member
 groups. One  example  documenting the need for PAN was the December 1993
 decision  of the California EPA that farmworkers and rural residents were not required
 to be warned when  methyl bromide was used, even though individuals exposed during
 structural fumigations would require notice. However, 90 percent of methyl bromide
 is used in agriculture.

       During the discussion, a 1994 change in EPA's new and historic commitment
 in 1993 to pesticide reduction was noted. After bringing the U.S. Department of
 Agriculture into the planning process, EPA changed its language from "use reduc-
 tion" to "risk reduction." With  this change, EPA could use its authority to immedi-
 ately ban, or at least phase  out from the market  in 3 years, known  toxic pesticides
 and to  stop the export of these chemicals to other countries when our own country
 stops using them.

                                                                Breakout Sessions
       Jill Guernsey-deZapien of the University of Arizona Medical School and
Cancer Center spoke next of 7 years' work with Arizona communities, building
model programs around various health issues, to which environmental health may be
added. A basic model program is built on the notion of locally based community
health advisors, who are trained in a given health issue during intensive, interactive
sessions that result in both health providers and community trainees seeing a problem
from a broader perspective, which helps them promote social  change. This type of
outreach is now underway in Nogales, AZ, a cancer cluster. The university  is asking
the NCI for money to expand the model to look at specific disease issues related to
environmental health.

       During the discussion, an attendee asked about experiences in combining labor
and community groups  into coalitions. Ms. Guernsey-deZapien observed that when
the university has tried  worksite programs, employers have not been cooperative, but
community health centers,  particularly in Yuma among the farmworkers, have
provided support. The white environmental group that formed the basis of Ms.
Moore's coalition was committed to involving more people and brought in labor and
other interests. The Monterey, CA, pesticide coalition began as a community-labor
coalition. It appears that groups with a sense of something to gain, and that can see
change, ordinarily will  stay with a coalition.

                                                            Breakout Sessions

       Dr. Marian Johnson-Thompson of the Office of Institutional Development
 (OID), NIEHS, proposed that the single most important element to address with
 regard to environmental issues may be education—not only of affected communities,
 so that people may understand what is happening to them, but also of young people,
 to encourage them to pursue environmental health careers. People of color and those
 in affected communities must be empowered to take control of their own situations. In
 addition, the public in general must be educated about environmental justice,  so that
 society as  a whole may take action.

       Researchers at the Off), noting the small numbers of people of color who were
 pursuing scientific careers, realized that beginning scientific training at the college
 level was too late. They realized that parents and communities must become involved
 in education and that the Nation needs, to encourage and provide education for  .
 minorities  and disadvantaged populations to improve science literacy and encourage
 those who are interested in pursuing careers in environmental science.

       Education and training are critical, and if the public wants to be heard, it must
 overcome an important obstacle: understanding the technical language used by govern-
 ment decisionmakers. For this reason, environmental education and training must
 involve a series of activities, from general public science literacy to training through
 the postsecondary and graduate levels to nonenvironmental professionals who make
 important decisions about environmental problems. Further emphasized was the
 desperate need  for people from communities of color and affected communities to
 serve in positions of power.

      Isiah Sewell, Director of the Environmental Education Division, Office of
Technology Development, DOE, told how DOE seeks to ensure the participation of
minority communities by developing an environmental consortium that solicits
nationally from minority institutions. The consortium comprises 17 minority colleges

Symposium on Health Research and Needs To Ensure Environmental Justice	

and universities across the country and has a broad range of activities, including
outreach,  precollege education, technology transfer grants, and research. Among its
members  are groups such as the National Congress for the Advancement of Minorities
in Environmental Professions, industries,  government agencies, and six community

       Milton Morris of Benedict College in Columbia, SC,  described Benedict as a
small minority institution and one of the few institutions of its size and status to have
an environmental sciences program. The college's program, developed by the
National Environmental Health Association, is designed to teach students the preven-
tive measures needed  to reduce both human and environmental exposure to harmful
substances. The program  was established in 1987 as part of a Title HI initiative with 5
students;  17 students are currently enrolled, and more are interested. To encourage
minority enrollment (99 percent of students are African American), the college's
science faculty (50 percent of whom are also African American) go into communities
throughout the State to promote the program.

       At this point, an attendee questioned the need for formal training and educa-
tion to participate in the decisionmaking process, noting that those in the community
have their own education and wealth of knowledge. Further, for the people in her
Native American community, the issues are simple: Their water—the lifeblood of the
people—is contaminated, and it does not matter what scientific terms and what levels
are used to explain the contamination. She continued that she  does not need  to be
educated to know that the water is not safe to drink. Making scientists out of com-
munity people will not solve the problem; many individuals simply want to live on the
earth in harmony with the environment.

       The speakers responded that community involvement is often sparked through
education. Further, primary and secondary education is a generally local activity. In
both instances, the Federal government .works with communities, which, in turn,
determine what activities will be provided through their local  schools and how they
will be implemented. Attendees did express concern over the inability to find adequate
or appropriate environmental education  curricula for students or for the community.
Programs  for non-English speaking communities do not appear to be available.

       Mr. Sewell noted  that his Environmental Education Division has materials
available for school districts. To begin to  address specific educational issues, NIEHS
has requested proposals from K-12 schools and has allocated funds to help schools
introduce  environmental health sciences education into existing curricula. NIEHS is
not developing a curriculum but is relying on local communities to do  so. Commun-
ities, in turn, may submit their curricula for funding to NIH,  which, in conjunction
with environmental organizations, community organizations, and individual consul-
tants, will review the  submitted curricula  for feasibility and soundness.

      NIEHS has also established centers in urban areas to address a protocol for
treating lead-poisoned  children; the cities included Baltimore,  MD; Philadelphia, PA;

                                                                 Breakout Sessions
Columbus, MO; and possibly, Atlanta, GA. Another attendee mentioned an industry-
funded curriculum for schools on radioactive wastes in North Carolina that stressed
the safety of the wastes. In response to a comment that the school system itself can
act as a roadblock to environmental education, it was noted that most agencies, such
as NIH,  have no mechanism for forcing curricula upon schools. However, people
may petition their school systems for the inclusion of environmental education
materials. Another option for community groups is to respond to NIEHS's Request
for Proposals (RFP) announcements.

       One attendee suggested that DOE send information on its curricula to school
systems and libraries and also provide information on direct funding mechanisms for
environmental tours, conducted by nonschool officials, to help educate children on
environmental issues and enable children to take the information back to school and to
their  community. The Oak Ridge, TN, Associated Universities,  a consortium of some
50 universities, has initiatives for implementing programs on laboratory research for
high  school students, environmental education, and training in environmental jobs.

       Several attendees criticized the structure of RFPs,  suggesting that the 1-month
lead time is insufficient for a lengthy application process,  particularly for community
groups, most of which lack  the resources, personnel, and  expertise found, for
example, at universities. Another attendee suggested involving community people
beforehand, perhaps as proposal reviewers.

       One attendee said that teachers must be educated by the people of the com-
munity, who, in turn, must participate in curriculum design. To teach environmental
sciences, the curriculum must use community problems as case studies so people can
identify with the problems at hand. While many universities send people to the
community to collect information about local environmental problems, they never
return to the community with help or information. A three-step process to address this
issue  was proposed: (1) Environmental studies  should equip people to establish the
causes of illness; (2) people can then trace these illnesses  to specific polluters; and
(3) policymakers can act on this information by requiring  polluters to pay for cleanup

       One  attendee also suggested the need for a broader understanding of people in
the development of environmental studies curricula. For example, terms such as
"ecofeminism,"  "deep ecology," and "biocentrism," that  represent different ways of
thinking about our environment, should be considered.

                                                            Breakout Sessions

          FURANS, AND  PCBS
       Pat Costner, Research Director of Greenpeace's U.S. Toxics Campaign,
reported the EPA estimates that approximately 25,000 grams of toxic equivalents (teq)
of dioxin are deposited each year over the continental United States and Alaska. An
additional 12,000 grams of teq are released each year into the air. These deposits and
releases should be compared with EPA's acceptable intake standard, by which 25,000
grams would be the acceptable lifetime—not annual—intake for 2.3 trillion people.

       Primary and secondary sources of dioxin include the production of chlorine
gas using graphite electrodes or mercury cells. In the United States, 15 percent of
chlorine is produced by this method. The waste from this process contains high levels
of dioxin and releases considerable amounts of the compound into the air. Other
sources of dioxin include bleached and unbleached paper pulp, chloranil (an inter-
mediate for certain dyes), and sewage sludge. Metal .recycling,..textile manufacturing,
and the rubber industry (for example, the  burning of tires) are also sources of dioxin
emission, as are forest fires. Thus, virtually any time a carbon-based material is
burned with a chlorine-based material, the emission will be harmful. Furthermore,
there have been problems with PCBs and other materials mixed  with home heating

      The health effects of dioxin (also called 2-3-7-8-tetrachlorodibenzo-p-dioxin, or
TCDD) and other similar chemicals, including the benzofurans and some PCBs, are
highly variable, according to Dr. Linda Birnbaum, Director of Environmental
Toxicology at EPA. At very high doses, for example, dioxin is  lethal. Before causing
death, however,  it causes a severe wasting syndrome, in which experimental and feral
animals lose as much as one-third to one-half their body weight. Death is not quick
and can take from \lh. weeks (guinea pigs) to as long as 8 weeks (rhesus monkeys).
No evidence to date shows that dioxin has ever directly  killed a  human, most likely
because humans  have not been acutely exposed to sufficiently high doses. However,
evidence shows that at lower doses dioxin damages the immune  system and causes the

 Symposium on Health Research and Needs To Ensure Environmental Justice
 sinus glands to shrivel, liver changes, edema, and chloracne—a severe dermatitis that
 extends throughout the body and has been known to persist for 40 years in industrial
 workers.  At still lower levels, dioxin can cause embryo and fetal toxicity and lethality
 in a number of species.

        Dioxin also causes cancer at multiple sites in males and females of all species
 examined. At least 18 cancer studies—all showing positive results—have been
 conducted in rats, mice, fish, and hamsters. These studies provide strong evidence
 that dioxin may also cause cancer in humans. Although a direct cause-and-effect
 relationship for cancer in humans has not been established, five studies within the past
 3 to 4 years have correlated dioxin levels in exposed humans with an increase in
 overall cancer rate and with an increased risk of lung cancer; cancers in the biliary
 system, thyroid gland, and blood; and certain kinds of lymphomas. Dioxin exposure
 may also increase the  risk of soft tissue sarcoma.

        The noncancer effects of dioxin in multiple species (rats,  mice, rabbits, cows,
 dogs, guinea pigs, mink, fish, and birds) include mortality, embryo or fetal toxicity,
 low-birthweight animals with poorly developed immune systems  and hemorrhaged
 gastrointestinal tracts,  and gross birth defects (especially in mice) such as cleft palate
 and hydronephrosis (a defect of the kidney).  Dioxin also retards  the normal develop-
 ment of the sinuses. Unlike studies of PCBs, animal studies on dioxin do not conclu-
 sively show that it is toxic to the neural system.  It is known that dioxin directly
 affects the developing genitourinary tract, leading to changes in the external genitalia.
 Scientists also have seen a decreased sperm count in male newborns, a permanent
 effect induced by prenatal exposure to dioxin. Further evidence has surfaced that male
 children born to women who were exposed to high levels of PCBs contaminated with
 dibenzofuran have micropenises when they reach puberty.

        Dioxin may also increase the risk of endometriosis, a major cause of infertil-
 ity, as well as a cause of painful menstrual cycles, in women. The proposed link
 between dioxin and endometriosis is suggested in two recent studies of rhesus
 monkeys who were fed dioxin or PCBs at levels comparable (i.e., within a factor of
 10) to the levels that humans encounter. EPA scientists have developed rat and mouse
 models for endometriosis in women and have performed preliminary experiments on
 dioxin exposure.

       The conundrum in dioxin research, however, is that rats and mice respond
 quite differently to dioxin exposure. Mice are very sensitive to the immune effects of
 dioxin, but adult rats are relatively insensitive. Yet, developing rats that are born to
 dioxin-exposed mothers have major immune system problems. Consequently, the
 stage of immune system development at the time of dioxin exposure may be critical in
 determining dioxin's effects.

       Dioxin also disrupts  multiple hormone systems in the body. Not only can
dioxin block or even mimic the effects of estrogen; it  can  also imitate the effects of

                                                                Breakout Sessions
excesses or deficiencies of vitamin A in the body. In some cases, dioxin can even
induce excesses or deficiencies of thyroid hormones.

       Although the regulatory agenda for dioxin previously focused exclusively on
cancer as an end point, recently scientists have begun to consider other effects (end
points) that occur at lower body levels than those associated with cancer. Clearly,
these effects demand attention, and future studies must focus on the critical popula-
tions: prenatally exposed children and women. Until now, almost all dioxin studies
have focused on men. Because dioxin can affect the reproductive system, prenatally
exposed children should be examined at birth, puberty,  and menopause.

       Dioxin belongs to a family of chemicals—all of similar structures—that bind to
the same receptor protein and can cause the same spectrum of effects. This family of
chemicals includes the dioxins, the benzofurans, the polychlorinated phenols, some of
the polychlorinated naphthalenes (used during World War n to make teak decks
water-resistant), and some industrial intermediates that are benzene-based. Because of
their similar structures, all these compounds follow a similar path once inside the
body (that is, the receptors in the body will interact with the chemical's molecules,
and changes will happen accordingly). Dioxin's effects are, however, tissue-specific.
The adverse effects of exposure to these chemicals also depends on where an organ-
ism is in its development—early embryo, fetus, child, or adult.

       The toxic equivalency factor (TEF) measures relative potency. Dioxin is the
most toxic chemical known to  scientists, with a TEF value of 1. By contrast, other
chemicals are given some fractional value. TEFs were developed on the basis of
several different health effects. TEFs differ among species; thus, the TEFs developed
for humans may not apply to other species and vice versa.  TEFs are based on
experimental animal studies using males and females of several species.

       The World  Health Organization recently, established .TEFs.for..dioxin and some
of the PCBs by weighting the results of various studies. Absorption data indicate that
the human body contains approximately 7 ppt of dioxin (as TCDD), 30 ppt of furans,
and 50-60 ppt of PCBs. Meanwhile, environmental exposure to dioxins and furans for
humans is  1-3 picograms per kilogram (pg/kg) of body weight per day. If PCBs are
added, the total absorption of this family of chemicals comes to 3-6 pg/kg of body
weight per day.

      Katsi Cook-Barreriro, a traditional Mohawk midwife (Wolf Clan),  spoke
about populations that have a much higher-than-average exposure to environmental
contaminants, including subsistence fishermen, minority communities, Native Ameri-
cans, and,  particularly, nursing infants, who are exposed to toxicants 10 to 40 times
more than average for a short period of time (depending on how long they nurse).
The infants' rapid development and their position at the top of the food web place
them in an especially sensitive  position. Fish,  dairy products, and beef are approxi-
mately equal sources of environmental contaminants in the U.S. diet. Research

 Symposium on Health Research and Needs To Ensure Environmental Justice
 suggests that the body burden in the general U.S. population is already at or near the
 level where adverse effects would be expected to occur.

       Indigenous societies are in a unique position, because they are often encour-
 aged to change or eliminate their traditions based on scientific findings. For example,
 a Native American community may accept the advisories not to eat fish; yet, fishing
 has always been their way of life, and fish have always been a major part of their
 diet,  as well as a key part of their ceremonies. Therefore, complying with the fish
 advisories contributes to a decline in the collective ability of the Native American
 community to transmit Native American culture  from generation to generation.

       The St. Regis Mohawk Nation at Akwesasne, located on the U.S.-Canadian
 border in New York State, serves as an example. The community of 10,000 is
 situated on 38,000 acres of land  along the Saint  Lawrence River. Less than 100 feet
 to the west of Akwesasne, and within 1,000 yards  of several Mohawk homes, is the
 General Motors  Corporation Central Foundry Division, which is an inactive hazard-
 ous waste site. This site is included on the EPA  NPL as a Superfund toxic waste site
 and is also listed on the New York State Department of Environmental Conservation's
 (NYSDEC) registry of inactive hazardous waste disposal sites as a Class 2 site, which
 means that it poses a significant threat to the public health and environment. For 25
 years, sludge from the wastewater treatment system of this facility was contaminated
 with  PCBs and disposed of in several lagoons and  landfills on the property. Onsite
 soil and sludge samples contain up to 4 percent PCBs, and significant offsite migra-
 tion has contaminated nearby sections of the St.  Lawrence River and its tributaries.
 Some soil samples collected near a landfill contained more than 50,000 parts per
 million (ppm) PCBs, a level 1,000 times higher  than that defining PCB-contaminated

       Also upstream from Akwesasne are the aluminum-processing facilities of
 Reynolds Metals, Inc., and ALCOA. These corporations have served as further
 sources of PCB contamination (as well as of numerous other chemical contaminants).
 These sites have been declared inactive hazardous waste sites by NYSDEC and are
 identified as local point sources of PCB contamination. The enormous magnitude of
 this PCB pollution has resulted in NYSDEC declaring the sediments and surface
 waters of affected  portions of the St. Lawrence,  Grasse, and Racquette rivers as
 inactive hazardous waste sites as well. Superimposed on these regional concerns is the
 generalized pollution of the Great Lakes-St. Lawrence River Basin with organo-
 chlorine pesticides, methyl mercury, and numerous other contaminants.

       This  chemical contamination has had a profound impact on the lifestyle of the
 Mohawks, who are threatened by the progressive poisoning of their land, water,
 animals, fish, and plants. The traditions and land-based culture of the Mohawks
emphasize the interdependence of humans and their environment; indeed, many
residents  depend on local fish, waterfowl, and wildlife for food. The admonition not
to eat fish marks not simply a dietary restriction for the Mohawk people but a
negation of much of the culture's meaning. Thus, the impact of environmental

                                                                Breakout Sessions
deterioration, not only on public health, but also on traditional native culture at
Akwesasne must not be underestimated or ignored by the scientific community. The
process of assessing and managing risk must be changed to include the cost of the loss
of culture and tradition.

       Unfortunately, community interaction with epidemiologists, lexicologists,
hydrogeologists, and other professionals has generated more questions than answers-
including those regarding the surprise finding of the enormous extent of contamination
on the reservation itself. The impact of this contamination became evident when the
skin of the people who washed with water from a stream near the landfill turned the
texture of an orange peel (that is, burned  and reddened) and when a heavy black fluid
came from water taps that were turned back on after having been shut off for a time.

       When women in the community concerned about health effects, especially in
children, pressed for answers as  to the safety of their breast milk, a study was
undertaken by scientists from the New York State Department of Health to test for
chemical contaminants in the breast milk of nursing Mohawk women.  The Mohawk
women were found to have the same levels of contaminants as women elsewhere in
the country (that is, 26 ppb). The interpretation of these results was that consumption
of local fish had declined significantly over time among the Mohawks,  attesting to the
concern of the mothers about the potential health effects of the environmental
contamination at Akwesasne.

       A previous $1.2-million health study had been conducted  in the late 1970s by
researchers from Mount Sinai Hospital in New York. During the study, scientists
drew blood samples, had residents fill out questionnaires, and hired Mohawk field-
workers. Conducting the study became difficult, however, in part because of a lack of
understanding of the cultural differences between the Native Americans and the
researchers. As a result of this experience, the Akwesasne Mohawk community
adopted an informal code of ethics, .requiring, that scientists .whom they invite into
their community increase their cultural competence so their research involves more
than just data collection.

       The major reasons for the current  successful relationship between the scientists
from the State Department of Health  and  the Mohawk community are their willing-
ness to learn from one another and their common understanding of several general
and interrelated principles that are critical to cross-cultural communication between
scientists and indigenous peoples.1 An understanding of these interrelated principles
   1 See the 1994 article "Communicating With the Public on Issues of Science and Public
Health," by Dr. David O. Carpenter (Dean, School of Public Health, State University of New
York at Albany, II University Place, Suite 310, Albany, NY), the principal investigator in
an NIEHS-funded study of the Akwesasne situation.

 Symposium on Health Research and Needs To Ensure Environmental Justice	

 of trust, respect, empowerment, and equity must be taught on a large  scale, involving
 governments, scientists, and communities, in order to achieve environmental justice.2

       During the discussion period, an attendee asked about the time range of studies
 on dioxin exposure. Included in the response was a description of one of the largest
 poisonings, which occurred in Italy in 1976 when an herbicide-producing factory
 exploded, spraying the area with dioxin. This year a team from the United States and
 the University of Milan will examine women who were children at the time of the
 explosion; these women are now 25 to 40 years old. The researchers also intend to
 look at the children who were in utero at the time of the explosion. In another case, a
 1979 explosion in Taiwan involved thousands of people. A team from Taiwan and
 NIEHS has followed the children extensively for the past 14 years. Now that the
 children are reaching puberty, the team is continuing the followup. A followup of the
 adults involved in the explosion is also underway.

       Other exposed populations have been identified. For example, in several areas
 of the former Soviet Union, where herbicide-producing factories were located, some
 residents have chloracne. Some children in these communities have chloracne because
 their parents brought the contaminants home from work on their clothes or through
 prenatal exposure. A difference between the occupational data from the former Soviet
 Union and Eastern Europe and the United States is the distribution of men and women
 who were exposed. Because equal numbers of both sexes worked in the  factories
 abroad, equal numbers were exposed. In the United States, the data mostly cover

       A pending study will investigate reproductive outcomes among  women in
 North Vietnam,  where there was no chemical spraying during the Vietnam War,
 compared with women in South Vietnam, where there was. Finally, among American
 Indian populations, researchers have looked at four tribes along the Columbia River in
 the northwestern United States. Looking at the fish consumption data from that
 survey, scientists concluded that Native Americans consumed, on the average, nine
 times more fish  than the general U.S. population. Some people may even consume  as
 much as 100 times more fish than the general population. Plans are underway to
 investigate what chemicals  are present in  the fish the tribes eat and any possible
 adverse health effects.

       One attendee objected to the calls  of scientists for yet  more studies, stressing
 instead the need to protect and train workers to  minimize exposure. Another speaker
 pointed out  that  contamination is a global problem and that the key to protection is
 prevention.  With dioxins and PCBs, the bottom line is to go to the root of their
 industrial source: the chlorine industry. At every stage in the industrial chlorine cycle,
 the generation, release, and dispersal of persistent and cumulative contaminants
 occurs. These technologies must be replaced by safer methods and processes.
   2 This is an addendum to the proceedings by the moderator of this breakout session,
Karen Medville, a Ph.D. candidate in environmental toxicology at Cornell University.


                                                             Breakout Sessions

       Christina Roessler of the University of Texas noted that the consensus of a
recent meeting of physicians and scientists to discuss risk assessment, biomonitoring,
and the ethics of community-based studies was that the results of studies often are
negative; that is, they seem to show nothing. In many cases, lack of effect may be
real, or, perhaps more often, it may be due to poor or inappropriate study design,
insufficient involvement of the community, insensitivity of the analytical or research
methods to the problem, or an overall lack of scientific or medical knowledge of the
impact of a toxic agent on the human body.

       Acknowledging these drawbacks in environmental health research, the panel
raised several ethical issues:

       •     What are the ethics of studying communities based on the principle of
             cause and effect, when we know otherwise that the cause is too compli-
             cated to prove?

       •     Is it ethical to study communities that have been exposed to hazardous
             chemicals without providing health care as well? And, what actions do
             these studies trigger? Is it ethical to reach conclusions on the alleged
             damage to a community based on studies that are incomplete (e.g., do
             not include all data, site visits, or interviews with  individuals who have
             been affected)?

       •     Finally,  how  much proof is necessary before a causal relationship
             between exposure to toxins and the onset of disease is an appropriate
             determination? What role should common sense play? Is it the responsi-
             bility of physicians and  scientists to promote the concepts  of prevention
             and safety with regard to the use of chemicals and technology?

      The panel decided on a precautionary approach, similar to that of the United
Nations Environmental Program's'Governing Council, which stated that  to avoid


 Symposium on Health Research and Needs To Ensure Environmental Justice	

 irreparable harm to the environment and human health, precautionary action should be
 taken wherever it is acknowledged that a substance could cause harm, even in the
 absence of conclusive scientific proof.

        The concerns raised by the panel were addressed through specific examples
 given by this breakout session's speakers and attendees. In one case, Elinor Blake of
 the California State Health Department spoke of the ethical concerns that arose for the
 department when it found high levels of dioxin, generated from a junkyard incinerator
 located near  an apartment building, in a rural, largely Latino community in the
 Mojave Desert. The department, believing that people had the right to know how
 much dioxin, if any, they had absorbed, offered residents blood tests. As department
 employees began to think further about the study and talked to other researchers,
 however, they perceived disadvantages to community testing.  For example,  dioxin is
 extremely carcinogenic for animals, but specific outcomes for any one human cannot
 be predicted, even if the level of dioxin in a person's blood is known. The department
 therefore established communication channels with residents to let them know both the
 benefits and  the drawbacks. Ultimately, of 63 eligible individuals, only 3 decided to
 have the dioxin blood test. Department employees decided against further testing
 because they did not see any benefits, concluding that the place and timing of the tests
 were not barriers to participation.

       Another study described by Ms. Roessler, conducted in  1990 by ATSDR,
 investigated mortality and selected morbidity among Native American firefighters
 after an April 1980 fire at the Russet Chemical Company warehouse, a facility that
 stored pesticides and other chemicals. The study was initiated after the community
 expressed concern that exposure to chemicals had increased the  incidence of cancer
 among  firefighters. The agency examined 26 firefighters, aged 28-65 years  (median
 age, 40), and,  finding that none had a medical history of cancer, concluded that the
 fire had not affected cancer incidence. At the same time, however,  the authors cited
 several problems with the study, including a very small sample size and a lack of
 knowledge of the type or concentration of chemicals involved in the fire; they also
 acknowledged that 10 years was too short a time in which to ascertain the develop-
 ment of occupational cancers and that they knew nothing about the health or occupa-
 tional backgrounds or the behaviors of the firefighters. Thus,  the paper may have
 incorrectly given the impression that the community had not been harmed.

       Another discussion focused on a 1987 study of PCB contamination and
 exposure at a Superfund site in Massachusetts, which was a pilot State for ATSDR at
 the time. The agency's mandate from Congress was to collect available health
information,  which, for most health departments, translates into death certificates,
birth  certificates, and cancer registry data—the kind of data that departments routinely
collect.  However,  working with these data, researchers are hard-pressed to prove
harm from toxins unless the exposure is extraordinary.

       Echoing other presentations, another presenter from west Dallas, TX, pointed
out that his community, which has a 50-year-old lead smelter  in addition to 15 other

                                                                Breakout Sessions
plants and consists primarily of poor people of color, had become resistant to
additional studies after receiving essentially no assistance or support after a chemical
spill at an asphalt plant and the closing of the lead smelter plant. Further,  the
community is situated on a Superfund site. After noting a high incidence of seizures
in children, young women who required hysterectomies, and small children with
swollen joints, the community requested help, including a clinic that specializes in
testing the blood lead level and treating lead poisoning. EPA has investigated the area
but failed to identify any problems within the  community.

       During the discussion, attendees strongly recommended that government
agencies change their approach to entering communities and the way they  conduct
studies or assess results. The bottom line was  for government agencies to involve the
members of the public at the beginning of a study to allow them to help with study
design, place on the table the questions they want answered, and become involved
with the study. Further, researchers conducting health studies should use the resources
of the community—resident experts who know who has died, who has been sick, and
over what time period. Resources must also be placed at the community level for the
kind of preparatory work needed to introduce  the community to a study and to honor
community requests for input.  Otherwise, the  community may reject health research
studies that are imposed on it from the outside.

       Recommendations and topics for a research agenda were given:

       •     Examine existing informed consent procedures to see whether they
              should encompass full disclosure of the pros and cons of testing.

       •     Examine the impact of biomonitoring on the community; that is, study
              results as well as any subsequent effects on  the community after tests
              have been done.

       •     Examine other social and behavioral study outcomes for change in
              behavior. In other words,  what  is the good of these tests? And what
              might be the harm?

       •      Develop a list of available tests  that expands upon the partial list of the
              National Research Council, with an overview of previous projects and
              consent procedures.

       •      Track forthcoming projects.

       An occupational health physician  from  Brown University offered these

       •      Agencies that fund studies should copy the approach of NIOSH.
              Briefly, no NIOSH study can go forward unless the people who will be
              the study subjects approve the methods.

 Symposium on Health Research and Needs To Ensure Environmental Justice	

        •     Each agency should have two or three levels of community participa-
              tion for research; that is, a local, elected, community-based review
              group comprising 50 percent residents; perhaps a similarly constituted
              regional review group; and a national advisory committee, comprising
              more than 50 percent community representatives elected at the local
              level to advise on national and local studies. No study would proceed
              without the approval of all three groups.

        •     Because scientists may abdicate responsibility for ethical issues in their
              work, each agency should develop a handbook for its scientists. In turn,
              each researcher should have to pass a test on his or her agency's ethical

        •     Each agency should be required to assemble a handbook for community
              people on ethical issues in language that is clearly understandable;
              culture-, race-, ethnic-, and gender-sensitive; and in multiple languages,
              where appropriate.

        Other suggestions and concerns expressed by attendees included the following:

        •     Develop new and easily understood definitions, as part of the work of
              the community in partnership with professionals.

        •     Provide background levels to give people a sense of the distribution of

        •     Strive for a goal of zero tolerance for any kind of contamination of the

        •     Increase educational efforts concerning use of agricultural chemicals in
              developing countries.

        •     Reverse the current top-down model, in which a hierarchy of scientist
              to community exists; at the very minimum, a partnership should be

        •     Increase education and research efforts on preventing pollution  and on
              learning more about the effects of chemical mixtures.

        •     Locate polluting  industries in isolated areas far from communities.

        •     Require agencies to calculate a cumulative risk, so when an individual
              company asks for a permit, the agency considers all other companies
              currently in the community.

        •     Substitute the term "alternative assessment" for "risk assessment."

                                                                 Breakout Sessions
       The following addition to the above session summarizes prepared remarks by
Linda-Jo Schierow, currently with the Congressional Research Service of the Library
of Congress, which she was unable to present because of winter weather.

       Ms.  Schierow had participated in a research project at the Massachusetts
Institute of Technology to determine the causes of angry confrontations in commun-
ities facing environmental health problems. She reported that in most cases, govern-
ment's failure to communicate with the community, especially during early stages,
was important and was interpreted by the community as disrespect and secretiveness.
Decisions that appeared insensitive also angered communities; for example, in Love
Canal officials agreed to  evaluate pregnant women and young children but not the rest
of the family. Although agency personnel showed stress because their desire to protect
their jobs and reputations were  not recognized as legitimate by citizens, the super-
visors needed to recognize that  communities tend to be self-absorbed and to help
administrative staff and researchers with their responsibilities.

       Along with communications problems, conflicting interests and value judg-
ments cause controversies. Strategies to avoid conflicts include better communication,
empowerment of residents, empowerment of agency personnel, protection of the
independence of research staff from political influence, and full consideration of all
options during decisionmaMng.  In applying these strategies, certain conflicts and
problems must be identified  at each stage of a study. The study stages consist of
hazard recognition, decision to  monitor, design of monitoring, conduct of monitoring,
evaluation of results, dissemination of results, decision whether to act, and action  (or

                                        Breakout Sessions

    Participants of this session declined to be recorded. Thus, there is no official
record of the discussion of this breakout group.

                                                             Breakout Sessions

      Marie O'Neill of the Indoor Air Division of EPA described EPA's Indoor Air
Program on asthma, which is designed to help communities prevent asthma through
environmental controls. EPA packages this information in a variety of media—in
curriculum, guidance documents, and training courses—for communities to use to
prevent  exposure to indoor pollutants. EPA also targets specific groups—for example,
building operators, who determine the maintenance and design of ventilation systems
or who  choose products to be used in a building. Recently, EPA has increased its
focus on asthma as a disease end point susceptible to indoor air pollution. At the
Federal  level, as part of the Healthy People 2000 agenda, EPA staff have met with
staff from other agencies to get communities involved in preventing environmental
exposures that are linked to asthma. This marks the early stages of EPA's asthma

      Some useful tools have already been developed through the Indoor Air
Program. EPA,  with the Institute of Medicine, funded a recently released report on
indoor allergens that included a research agenda and recommendations for action.
Another report—a guidance document—gives homeowners advice on how to reduce
exposure to indoor pollutants (e.g.,  combustion appliances and biological pollutants),
and another new brochure focuses on secondhand smoke. Further, in January  1994
EPA released a risk assessment study that ties secondhand smoke to cancer  and other
injuries  to children's health, particularly to the health of asthmatic children. As a
result, many facilities, such as day care centers, have acted to reduce children's
exposure to secondhand smoke.

      EPA also has given funding to the ALA to develop a school-based curriculum
for children with asthma (the open-airways curriculum) that has been piloted in
several cities. The curriculum is being evaluated on its effectiveness in helping
children  manage their asthma and reduce their exposure to environmental triggers,
such as parental smoking. In addition, the curriculum uses practical advice to reduce
dependence on inhalers. Currently, EPA expects to work more closely with ALA to

 Symposium on Health Research and Needs To Ensure Environmental Justice	

 expand the distribution of the curriculum, particularly to inner-city schools. Finally,
 EPA is developing a guide for schools to help them improve indoor air quality.

       Dr. Sydney Parker noted that the National Heart, Lung, and Blood Institute
 (NHLBI) has a long track record of training and outreach programs and a strong
 history of working with underrepresented minority populations. Many of the lessons
 of working with underrepresented populations are outlined in a 1992 conference
 report, "Health Behavior Research in Minority Populations: Access, Design, and
 Implementation." Publications on career development programs  and on NHLBI-
 supported minority outreach research and investigation give further information.

       The National Asthma Education program, also promoted by NHLBI, has
 targeted its first public education effort at minorities, particularly African-American
 families. Radio spots and print ads are thus pointing out the warning signs of asthma
 and urging people to see a physician. NHLBI regularly broadcasts a 60-second
 health-beat radio spot, which focuses on heart,  lung, and blood diseases.

       Four  years ago, Johns Hopkins University in Baltimore, MD, joined with
 Clergy United for Renewal of East Baltimore (CURE) under an NHLBI grant to
 reduce smoking in the community. Dr. Francis Stillman of Johns Hopkins and
 Reverend Herbert Watson described this collaboration. The East Baltimore catch-
 ment area has 150,000 people and 235 churches (all of which are represented in
 CURE). Eighty-one percent of the population are African American; 41 percent have
 a high school education; and 12 percent have a college education. The average age of
 residents is 31 years, and  36 percent of residents are at or below the poverty level.
 More than 65 percent of the community attend  church. On the health front, a high
 proportion of the residents have heart disease and cancer. Moreover, about 40 percent
 of die residents smoke, and the rate is on the rise.

       The project, called "Safe and Smoke-Free," reflects the reality of residents'
 lives and their concerns with more than just tobacco. Further, the project includes
 people who currently smoke. Direct approaches to ridding the city of tobacco use
 include lobbying for legislation to ban billboards and advertising that promote tobacco
 use. Members of the research project also visit homes to test air quality. A commun-
 ity health center run by CURE community health workers, with support from Johns
 Hopkins, provides day-to-day support within the community.

        Funding for the project goes directly to CURE, which decides how monies
 will be spent. In this way, the community has shaped the study. The project has given
 some residents jobs and training, such as gathering information for the study and
 interviewing  respondents on the street and by telephone. Both the clergy and the
 researchers have directly benefited. Because of the link with Johns Hopkins, the
 clergy has become more educated about environmental issues, thus strengthening the
partnership. Similarly, researchers have gained access to and an increased sensitivity
 to the community through  the clergy.

                                                                Breakout Sessions
       Also discussed at the session was a new set of collaborative projects on
minority health that were funded last year by NHLBI. One group of investigators
from Columbia University, Presbyterian Hospital, Harlem Hospital, and the graduate
school of City University in New York has come together to determine the causes of
excess morbidity from asthma in African-American and Latino populations in north
Manhattan. The group plans to design interventions that reverse this phenomenon and
is studying whether frequent use of the emergency room by a population of predomi-
nantly  Latino children is associated with the absence of an adequate continuing
relationship with a primary care provider, severity of the disease, lack of adequate
medical therapy to follow asthma at home, or knowledge to use that therapy correctly.
The researchers also will test the generally held assumption that specialty clinics
provide the best care for adults with asthma. In addition, national and local data on
two inner-city communities—one largely African American and the other Latino—will
be used to determine the independent effects of poverty, race, and community
disadvantages on the increase in morbidity from asthma in adults and children and to
identify social,  behavioral, environmental, and health service factors that are amen-
able to intervention. The final component of this research program will evaluate the
efficacy of an asthma self-management intervention program, using a trained family
coordinator in helping children ages 4-19 years manage asthma.

       In another effort, the State of New Mexico has joined the New Mexico State
Children's Medical Services in a study to evaluate the effects of a new statewide
program to enhance the identification, referral, and provision of care to rural families
of Hispanic and Native-American children with moderately severe to severe asthma.
All counties have been randomly assigned to an experimental or a control condition,
and the project is expected to identify at least 300 children with moderately severe
asthma. The children will be referred to the University of New Mexico for initial
consultation. In turn, university staff will work with local providers to follow the
patients clinically, with patients returning periodically to the university over a 3-year
period for evaluation.

       Gaps in our understanding of the relationship between the environment and
asthma can be filled only through well-designed basic epidemiologic, clinical, and
educational research. An NHLBI task force cited the following needs:

       •     More population-based, clinical, epidemiological investigations of the
             etiology of asthma, including genetic and environmental causes, to
             characterize asthma patients.

       •     More long-term investigations into the impact of breastfeeding, aero-
             allergen avoidance, and reduction in passive smoking in infants at risk
             for asthma.

       •     Evaluations of the efficacy and cost-effectiveness of measures to reduce
             indoor air pollution to prevent asthma among  older children and adults
             at risk for asthma.

 Symposium on Health Research and Needs To Ensure Environmental Justice	

       •     Long-term studies to determine the mechanisms by which smoking
              promotes allergic sensitization to occupational allergens and leads to
              increases in airway responsiveness.

       •     Population-based studies to determine the effects of specific pollutants
              on the induction and aggravation of bronchial hyperreactivity.

       •     Behavioral research on asthma, with more interventions to improve
              management, particularly in low-income adults, older families, and
              families with children under age 7 years.

       •     Studies on the use of the peak flow meter, a home monitoring device.

       •     Evaluation of model programs that  use schools as the setting to assist
              children and families in managing asthma.

       •     Investigation into the effects of stress, emotions, and psychoneuro-
              immunology on asthma, particularly among high-stress urban

       During additional discussion, one  attendee stressed the importance of preven-
 tion—namely, eliminating indoor and outdoor pollution—emphasizing that minority
 communities should not  simply become better consumers of medical care and drugs.
 Translation of information on prevention  into clinical practice also was discussed. For
 example, many clinicians want children with asthma to lead as normal lives as
 possible and, as a result, tell children to stay inside on high-pollution days. However,
 there are a lot of triggers for asthma, of which pollution is just one. Studies have
 identified at least two additional important risk factors for asthma—tobacco smoke and
 nitrogen dioxide (poorly heated and ventilated homes that use gas stoves for heat have
 high levels of nitrogen dioxide). Thus, control of potential triggers in the indoor
 environment, including tobacco smoke, is critical, especially if an asthmatic child is
 in the house. Communities can also participate in  or lead efforts to control the outside
 environment (for example,  shutting down a polluting factory).

       The paucity of minority professionals trained in asthma research was dis-
 cussed, and meeting participants were encouraged by one attendee to lobby Congress
 for more training for minority researchers. The questions that challenge Federal
 agencies include the following: (1) Should real community participation be required?
 (2) Should mechanisms be designed to evaluate community involvement in research
 programs? Answering these questions will require building an infrastructure to
 examine  grant applications.

                                                            Breakout Sessions

      Elmer Chenault of EPA Region Vffl said that the environmental legacy of the
Federal government's mission has been felt throughout all the Nation's communities,
particularly minority and low-income communities.  The estimated annual cost of
cleanup for Federal facilities alone in the country is more than $400 billion, and the
process most likely will extend  into the next century.  An EPA Region Vin investi-
gation revealed that more than $300 million for FY 1994 has been budgeted and
funded for cleanup at Federal facilities; at least nine other regional offices  have
similar budgets. The EPA study discovered, however, that under the Installation
Restoration Program, minority contractors had been excluded from cleanup activities.

      Another study conducted in Brooklyn, NY,  showed that for every dollar spent
there, 80 cents was recirculated within the community. In contrast, every dollar spent
in a wealthier nearby community generated $8. That gap was larger than the income
gap between the two communities. Thus, a core issue is control; that is, the control of
the circulation of wealth within a community is as important as the income coming
into it. Therefore, simply infusing dollars into low-income communities is  not
necessarily enough.

      With this backdrop, the  speakers at the breakout session noted that  pollution is
a symptom, and prevention addresses that symptom. In turn, community and eco-
nomic empowerment represent long-term solutions.  With these assumptions, it is
possible to link the concept of community and economic development to "environ-
mental racism," thus paving the way to understand  why some communities lack the
expertise  and infrastructure to handle a cleanup. Balancing community activism with
economic development  is  a tremendous—but necessary—challenge.

      Dr. Curtina Mooreland-Young of Jackson  State University noted  that
improving the overall economic and environmental  status of communities and
individuals is a high priority in  Mississippi. According to the "Green Index,"
published by the Institute  of Environmental Studies, Mississippi ranked 47th among
all 50 States in terms of environmental health; 49th for premature environmental


 Symposium on Health Research and Needs To Ensure Environmental Justice	

 deaths; and 50th on its congressional voting score on environmental issues. The State
 also has consistently ranked between 47th and 50th in per capita income. In addition,
 between 35 percent and 40 percent of the population are people of color, although the
 official figure may actually be higher. Some argue that, as a poor, minority State,
 Mississippi—with attributes and laws that tend to favor the location and practices of
 certain businesses—is a prime target for chemical industries and pollution.

       At Jackson State University, a historically black university, officials have
 developed a three-pronged approach to solve the State's long-term problem through
 the empowerment of communities of people of color. A fundamental precept of the
 program is  the reality of environmental injustice and racism. A primary goal is to
 educate practitioners of color who may someday, for example,  lead EPA.

       One prong of the university's program is student and faculty development. The
 university has developed two curricula: one in environmental management, planning,
 and policy,  and a second in community and economic development. Both master's and
 doctoral degrees are offered. The two curricula  are integrally linked: Students
 specializing in community and economic  development must take environmental
 courses and vice versa. At the same time, faculty have tried to  instill an ethic of
 service in students.

       The  second prong  of the program centers on faculty and administrators.
 Efforts are focused on increasing the knowledge and changing the mindset of univer-
 sity faculty, who were not educated in the dual issues of environmental and economic
 justice and for whom these issues were not linked.

       The  third prong involves community outreach. Among the university's
 accomplishments is sponsorship of a congressional hearing on environmental health,
 economic development, and racism. The  university also provided  forums to link civil
 rights and environmental groups together, such as  the Fannie Lou Hamer forums.
 Students and faculty are working with the Mississippi Black Caucus to help draft
 environmental justice legislation, are involved in a comparative risk project that
 includes economic and crime issues, and  participate in outreach programs for students
 in middle schools in the poorest parts of Jackson, MS. Long-term efforts include
 developing mechanisms and action-oriented research toward sustainable development
 projects in Mississippi. The university is  planning  an environmental summit with
 grassroots organizations, hoping to develop a directory of State-based environmental
 groups as a  resource guide. Funding for the program, which comes from HUD and
 EPA, supports a minimum of 20 students at the graduate level.

       In another forum—a minority contract conference titled  "Environmental Justice
 Through Economic Empowerment Workshop"—the issues of economic empowerment
 through pollution prevention were examined. The workshop, held in December 1993
 after activist Tom Godwin asked EPA for help,  was designed to attract minority
 contractors into the arena  and to encourage  these contractors to pursue  Federal dollars

                                                                Breakout Sessions
that were slated for cleanup projects; pollution prevention provides another oppor-
tunity for minority businesses.

       Historically, minority contractors have not been awarded remediation jobs for
a variety of reasons: no work history, inadequate bonding and insurance, and ques-
tionable capacity. In many cases, the reasons were justifiable enough, because the
contractors had never been allowed to get jobs before—but this is a vicious cycle.
Workshop speakers stressed that minority contractors need to get into the system,
work with it, and learn how to win contracts.  In Colorado, for example, minority
business sectors, including the Asian, black, Hispanic, Indian, and women's sectors,
united in an effort to break into the environmental cleanup business.

       The economic empowerment workshop illustrated the crucial need for team-
work. Attendees included staff from EPA, the Air Force Center for Environmental
Excellence,  16 prime contractors,  30 minority businesses, and 4 community leaders.
Meeting participants addressed the Federal Facilities Compliance Act, which requires
that individuals learn how to set up community planning and ombudsman programs.
Attendees also focused on how to  work together to overcome environmental prob-
lems, with each party presenting its own expectations and desires: Prime contractors
were  interested in sharing problems, whereas small businesses were interested in
education and training to learn the system.

       Initial 30-day evaluations disclosed that the prime contractors, who were the
most  pleased of all the attendees, were interested in identifying minority contractors.
The workshop evaluation comments also indicated that prime contractors were looking
for ways to help each other, to subcontract within the community, and to improve the
overall process. A 3-month evaluation is planned.

       The last speaker, Dennis Livingston of Baltimore, MD, stated that over the
next few years, the Federal government will spend $120 million per year for lead
abatement. Yet, minority and other contractors in low-income communities continue
to face barriers: difficulty in obtaining insurance, lack of sufficient capital and cash
flow,  and lack of contacts among the networks making contract decisions. Two  ways
to overcome these barriers would be to require municipalities to help build the
capacity of community-based contractors by giving preference to local contractors and
to help develop consortia of local contractors to share technical and business
resources, space, capital equipment,  and bulk purchasing.

      Overall, according to Mr. Livingston, the environmental justice  movement is
one of the most exciting in  decades because (1) it understands the balance between
community economics and activism and between natural and human environments,
(2) it  can work with  government agencies to keep money within communities, and
(3) it  is a movement of, and led by, people of color.

      During the discussion, one speaker noted that "environmental justice"  may be
considered an elusive term; some view it as a  topic involving the location of

 Symposium on Health Research and Needs To Ensure Environmental Justice	

 hazardous wastes in communities of people of color, while others perceive it as
 involving the selective enforcement of environmental regulations in all communities.
 Still others see it as involving issues of economic development and empowerment.

       An attendee from the University of Massachusetts at Lowell, who is working
 with the Toxic Use Reduction Institute, noted that toxic reduction may put some
 people out of business. Ironically, if toxic substances do not enter the environment,
 the need for the management or cleanup of such substances is eliminated.

       The following suggestions were offered as means of achieving pollution
 prevention (not pollution control or cleanup) over a long period:

       •     Develop "sustainable" models to ensure jobs for environmental
              managers to protect our environmental legacy.

       •     Substitute toxic materials with nontoxic or less toxic agents (which also
              addresses the potential loss of jobs).

       •     Accept individual responsibility for stewardship of our environment.

       One speaker reminded the audience that (1) in discussing pollution prevention,
 it is important to remember that workers, like communities, have much to contribute
 to dialogue about change and (2) cleanup workers must be protected. The absence of
 representatives from OSHA was noted.

       An attendee asked about the best approach to training workers who do the
 actual cleanups. The bottom line, speakers noted, is that workers be trained  as
 technicians and supervisors, not just as laborers. Simply put, minimally trained
 workers will remain laborers. Additional training offers opportunities for further
 advancement. Such training probably will be expensive, but communities should
 expect funding from the Federal government. It was noted that the total cost of a
 training program for 2 years is the same as the cost—$300,000—for one 10-year jail

                                                               Breakout Sessions

       The first speaker described the efforts of DOE Secretary Hazel O'Leary and
others in the Clinton administration to open up the Department, halt any destruction
of records, and provide access to previously secret information on nuclear tests,
radioactive materials, and past illegal radiation experimentation. The President's
Human Radiation Interagency Working Group was established in January 1994 to ask
ethical and scientific questions, determine whether laws and regulations were violated
and whether existing legislation is adequate to deal with these issues, give a full
accounting, and consider possible types of compensation. There is concern, however,
that disclosing the names of subjects or of their next of kin would constitute an
invasion of privacy and add insult to the harm to which they have already been

       The types of radiation experiments conducted on human subjects included
effects on various organs, systems, and tumors, use of radioactive tracers to study
biological processes, and dispersion of radiation through the biosphere after inten-
tional release.  Two particularly troubling aspects were  the apparent lack of informed
consent from subjects and the selection of subjects who were clearly vulnerable,
including people of color, people with little education,  patients who were already sick
or dying, and pregnant women.

       The Working Group's independent advisory committee is focusing on all
radiation experiments conducted since 1944 that did not involve therapeutic or
diagnostic uses of radiation. Its goal is to make recommendations on the adequacy of
existing research guidelines, review experimental procedures, and provide advice
concerning lapses in scientific and ethical standards.  When a session participant asked
if the committee would  examine whether health care workers  were adequately
protected when dealing  with radiation  technologies, the speaker said that he would
convey that concern.

       The speaker noted that the first step is  to obtain an overview of the problem.
Persons who suspect that they or a family member were unwilling subjects in medical

 Symposium on Health Research and Needs To Ensure Environmental Justice
 or government experiments should phone 800-493-2998, which logged 1,000 calls
 per day in the first few weeks of operation.

        The second speaker, a physician, said that his investigations of these unethical
 government-sponsored experiments have been impeded by government officials
 withholding information. He also said that the government's claim of protecting the
 victims' right to privacy is specious, since many victims and their families have
 requested their own medical records without success. In the case of a railroad porter
 whose injured leg was injected with plutonium, observed, and then amputated, the
 General Counsel of the DOD still holds the medical records requested by the family.

        The speaker criticized the failure to use  scientific principles and methods as
 well as the lack of informed consent. For example, the investigators in the case of the
 railroad porter did not know exactly what they had injected or how much, and they
 did not follow up on the subject. Experiments between 1940 and 1975 at the Univer-
 sity of  Cincinnati concerned with the health effects of wartime radiation on soldiers
 had similar flaws, used lethal, not therapeutic, doses of radiation on poor blacks with
 cancer, and killed at least eight people. Samples of new, untested isotopes were sent
 from the Oak Ridge, TN, research  facility to Charity Hospital in New Orleans for
 injection into unknowing, indigent blacks.

        Besides lack of true treatment for their disease, subjects were denied treatment
 for radiation-induced nausea and vomiting,  and  written instructions forbade nurses
 from asking about symptoms of nausea and diarrhea. In a truly scientific inquiry,  such
 details would have been considered important.

        Other issues raised  by the speaker included the competence of current person-
 nel to conduct these investigations;  the past use of review boards whose members all
 had special interests; and the guilt that should be shared not only by government
 agencies, but by the universities that received funding, the journal staff and readers
 who did not object to the research when results were published, and the contractors
 who also destroyed records. The claim that the  experiments were important for the
 purpose of learning how to protect  workers is specious since the DOD and DOE still
 do a poor job of worker protection. Even today's researchers are not exempt from
 blame,  because none have  stepped forward  to help investigate these cases.

       Participants mentioned other concerns about the routine releases of radiation
 into the environment at the Savannah River nuclear site in South Carolina; the need to
 follow up veterans who were exposed to atomic bomb testing; and the current lack of
 adequate protection for  workers cleaning nuclear weapons production sites. They  were
 told that 250,000 soldiers,  sailors, and residents of the Marshall Islands will be
 studied  and that they should file Freedom of Information Act requests to obtain health
 and personnel records of friends and family possibly involved in suspect incidents and

                                                                Breakout Sessions
       Participants showed a great deal of emotional upset throughout this session,
about past experimentation, alleged continuing coverup, and lack of cooperation by
offices and staff of the Federal government.

       In closing, the first speaker commented that beyond dealing with the shock that
these experiments even occurred comes the important task of making sure it never
happens again.

                                                          Breakout Sessions

      Dr. Diane Gold of Brigham and Women's Hospital discussed three types
 of respiratory diseases that disproportionately affect people of color or the
 socioeconomically disadvantaged—lung cancer, tuberculosis (TB), and asthma.
 Lung cancer causes nearly a quarter of all cancer deaths and is attributable
 mainly to cigarette smoking; its rates are down for white males, but not for
 white females or black males and females. Furthermore, tobacco advertising
 targets the disadvantaged, and occupational exposures are likely to be important
 although data on these exposures are too few to be sure.

      TB, which has always had a high incidence among socioeconomically
 disadvantaged people and is nearly 50 percent fatal when untreated, decreased
 steadily in the United States until 1985, then rose in association with HIV
 infection and the increase in multiple-drug resistant TB. Prevention and detec-
 tion are crucial, requiring intense efforts.

      With rates increasing, asthma affects 10 million to 20 million persons in
 the United States, including more women than men. Blacks are affected more
 than whites and Hispanics. Related factors include cigarette smoking, low
 birthweight, a large family, small house size, scant maternal education, residence
 with only one parent, and extreme poverty. Since outdoor air pollution does not
 differ among groups  with different asthma rates, indoor factors need more study.

      David Coultas of the University of New Mexico said that it is important
to know how environmental agents interact and how to intervene to prevent
lung diseases, such as by eliminating certain exposures. Major risk factors for
minorities include cigarette smoking, indoor and outdoor air pollution, and
occupation,  such as laborer and farmer. Minorities are also likely to have greater
exposure to dust, fumes, and other pollutants than persons working in manag-
erial and professional areas.

Symposium on Health Research and Needs To Ensure Environmental Justice	

       In the 1989-1993 survey that Mr. Coultas conducted of nonmalignant
lung diseases among Southwestern miners, a higher rate (14 percent) of silicosis
(a totally preventable disease) was found in Native American miners, compared
with 7 percent in non-Hispanic whites and 6 percent in Hispanics. Native
Americans, who had worked as miners for more than 20 years, had a greater
incidence (28 percent). Copper mining, open pit mining, and potash mining
increased the risks. Ongoing surveillance of workers is needed to detect early
disease and prevent deaths.

       Dr. Peyton Eggleston of Johns Hopkins University described a national
cooperative asthma study of eight inner-city sites begun by NIAID to assess why
asthma problems are rising among inner-city poor black and Hispanic children
and to test interventions. Potential causative factors include inadequate medical
care, stress, intrinsic problems of the affected population, and environmental
exposures. Children's exposure to cigarettes will be measured by detecting
cotinine, a breakdown product of nicotine, and through a questionnaire on
smoking at home. Nitrogen dioxide, an irritant from excessive burning of gas
stoves and kerosene (for instance, as heating supplements), is also being moni-
tored in the children's homes and appears to precipitate asthma attacks.

       When looking for differences between poor and middle-class homes
regarding the presence of allergens from cockroaches, dust mites, and cats, the
major difference was elevated cockroach antigen in many of the poorer homes.
Since this factor seems to cause increased daily symptoms and emergency room
visits, Dr. Eggleston recommended focusing the study's intervention phase on
cockroach eradication to ease asthma symptoms. The intervention phase will use
a model called "Case Management by an Asthma Advocate."

       During the discussion, it was pointed out that studies of genetic factors
and interventions to correct poorly constructed housing are beyond the scope  of
this project and that there is evidence that removing a child with asthma from
his or her environment can result in improvement.

                                                         Breakout Sessions

          ISSUES) i
      A Hispanic woman told of working in California for many years in the
 presence of pesticides without ever seeing a warning label. In 1986 she worked
 on the same farm where 96 persons were poisoned by pesticide spray after they
 had been told to enter a field while a plane was spraying pesticides or else they
 would lose their jobs. Despite publicity about the poisonings, the system has not
 changed. The farm's owner has connections to the governor. The speaker, who
 views U.S. Federal agencies as worse than those of Mexico, made available an
 article she had helped research on the problems of the farmworkers.

      Dr. Angus Wright of California State University-Sacramento then spoke
 about farmworkers and pesticides, suggesting some research ideas and taking
 into consideration the back-and-forth movement of peoples between Mezo-
 America and the United States. These farmworkers suffer from so many health,
 economic, and social problems that they rarely describe pesticides as their
 number-one health problem. Pesticide studies that presume the subject is
 otherwise healthy have little applicability to this situation.

      The United States needs to recognize that the number of migrant farm-
 workers is rising. While the signing of the NAFTA presents an opportunity to
 research transborder life and health issues, farmworkers will never be fully
 protected except by developing organizational strength. Other factors that may
 help are to develop a healthy agriculture based on policies for increasing safety
 and reducing pesticide use and to adopt crop  strategies that permit employment
 of workers on a permanent, rather than seasonal basis. Organic agricultural
 operations, in particular, are employing permanent workers. The health of these
   1 The second tape identified as recording this session deals with community issues
unrelated to pesticide exposure, the official topic of this session.


Symposium on Health Research and Needs To Ensure Environmental Justice	

workers could be compared with that of the migrant workers. (One participant
suggested that the government help maintain farmers and farmworkers during a
3-year transition period to organic farming.)

       Dr. Wright urged health researchers to acquire a greater understanding
of political realities. As an example, when researchers looking for areas of
greatest agricultural risk pinpointed areas with high reports of pesticide poison-
ings, those areas turned out to be ones where organized labor unions were
making sure that the reports were made.

       Martha Moreno  of the Committee on Agriculture in California described
frequent spraying of excessive amounts of pesticides and other chemicals on
grapes and dates and reported on several  incidents in which women showed
direct effects, such as fainting, and were not given proper care. She knows also
of human miscarriages and deformed chicks. She asked for better inspections,
enforcement of correct spraying and materials handling, and availability of basic
hygienic care. She fully expects to be fired because of her activism.

       Comments during the discussion included  a recommendation to advocate
organic farming, while remaining aware that farmworkers can be exploited
there, too; a reminder that farmworkers are exposed to greater levels of chemi-
cals than consumers; and a plea to work for political power rather than relying
on scientific proof of problems. One professor of agricultural medicine termed
farming the most dangerous occupation in the United States, with pesticide
poisoning ranking 10th among causes of immediate farm deaths. He recom-
mended including chronic disease to change the ranking for pesticides. He also
cautioned that researchers can lose their objectivity, whether or not they work
for chemical companies.

       Other discussants asked (1) for a model of agriculture that does not
exploit people; (2) whether community members should validate their own
suspicions by looking into the health system to find a pattern that physicians
and hospitals do not recognize; and (3) whether a community-based system is
sustainable in the face of economically targeted investors.  One suggestion was to
use scientific information as a  political tool and health as a moral issue.

      A participant then reported that the statistics concerning pesticides as a
cause of death are much worse for farmworkers than for farmers and said that 5
to 13 percent of workers have been reported clinically poisoned in various
examples. There is also evidence of chronic neurologic effects. Furthermore,
reports on mortality can misdiagnose causes; in a Philippine study,  deaths
related to organophosphate pesticides were attributed to strokes.

      Sylvia Herrera, a participant in People Organized for the Defense of
Earth and Her Resources  (PODER) in Austin, TX, described how this organi-
zation became involved in two community issues  and also  mentioned its aim of
dialoguing with high-tech  companies about potential problems and why local

                                                            Breakout Sessions
people were not winning jobs in the industry.2 Her own involvement started
with reading a public notice about the potential expansion of an oil company
facility. Concerned about emissions, PODER organized the community, gathering
information (such as data on prevailing winds), encouraging publicity, and
insisting on a cumulative look at the emissions from all sources in the area.
PODER discovered and began to monitor lead contamination as well.

       The county government and the State health department provided some
cooperation, but the city, including the fire department, initially presented
impediments. The Federal government did not provide assistance  except for a
70-page EPA report. Even the way the Federal government provided data on
cancer incidence was not helpful. The community is still trying to get a handle
on the health effects. However, a research team from the University of Texas
Medical Branch was of little help except for doing some tests.

       Eventually, all the oil companies shut down their facilities. The last one,
Exxon, did so only after an extensive PODER campaign. The companies should
have provided public notification and buffer zones from the outset. PODER is
still in litigation to recover property damages and because the remediation
process was unsatisfactory.

       Noise pollution and concerns about electromagnetic fields from the oldest
local power plant led PODER to participate in another community effort,
establishing a citizens' monitoring committee, preparing brochures, and working
with city and county employees.

       The next subject discussed at this session involved issues relating to lead
levels in Alameda County, CA. Concerned about tests showing high lead levels in
the environment and lead poisoning in 60 percent  of 500 children  tested,
PUEBLO, an Oakland community group, succeeded in getting the local cities and
county to set up a benefit assessment district, in which every home built before
1978 is assessed $10 per year.

       Steve Schwartzberg of Alameda County's Lead Pollution Prevention
Program discussed additional issues involving lead, plus another issue in which
the government appeared to use lead as a distraction. In the case  of a park (built
on an old battery manufacturing site) with "yellow ooze,"  which was later
identified as arsenic and zinc, the city concentrated on lead pollution, possibly to
avoid the potentially more serious problems of arsenic and zinc. However, the
blood tests to measure lead levels of community children were not scheduled
until a time when the lead would  have cleared the bloodstream and moved into
the children's bones.

      Besides remediation of the  park, supervised by Oakland's environmental
health department, positive steps  include enlisting an outreach worker to hire
   2 As noted earlier, the rest of this session does not deal with pesticide exposure.

 Symposium on Health Research and Needs To Ensure Environmental Justice
 six local persons to conduct door-to-door interviews. The interviews will serve as
 a tool to enter the homes in order to refer people to community services such as
 prenatal care clinics.

       The high level of lead in the houses, soil, and ambient dust that occurs in
 the area is illustrated by the results of environmental samples taken from the
 play area of a school near this park. Lead levels of 2,000 to 6,500 ppm were
 discovered, indicating conditions 100 times worse than those in the park. The
 children in day care who use the play area need to be supervised for careful
 handwashing before they eat.

       A California Proposition 65 lawsuit against the importers of leaded
 pottery and tableware has led to a settlement fund that is supporting a confer-
 ence of Latino leaders to help alert the community to the dangers of leaded
 pottery. Some cultural sensitivity is being shown by having the government
 sponsor stay in the background. However, one plan for publicity may not work
 because the planned ad resembles a ploy sometimes used by the Immigration
 and Naturalization Service.

                                                          Breakout Sessions

       Carol Roos, a school social worker, reported on a Tucson, AZ, commun-
 ity study that revealed a high rate of cancer in children and adults exposed to
 trichloroethylene (TCE) through the water supply. The first step was when she
 noticed that several school children had the same rare type of cancer. Another
 crucial step came when reporter Jane Kay recognized that the disease incidence
 could be linked to TCE from an old aircraft-cleaning facility that was seeping
 into a local aquifer, a major community water source.

       A specialist from NCI helped with an exposure study that revealed various
 cancer cases and a testicular cancer rate 6.7 times that expected. Despite a
 30-mile spread of the TCE plume, the health department was uncooperative. A
 class action suit against the U.S. Air Force, Hughes Aircraft, and the City of
 Tucson, including its airport authority, was needed to produce a cleanup.

       A woman from the Environmental Health Network added that the
 network could help prepare communities to do their own environmental studies
 by assisting them with training, surveys, registries, and workshop development.

       Antonio Diaz of PODER, a community organization in east Austin, TX,
 reported on work done by people of color on environmental issues in that
 community, including their detection of health effects linked to a tank farm and
 a power plant. Tests detecting contaminants in the air, water, and soil and
 anecdotal reports of health effects in the neighborhood of a tank farm led
 PODER to use health questionnaires in affected neighborhoods. Besides gather-
 ing information, the questionnaires served as an instructional tool. Eventually,
 all six oil companies having tank farms in the area agreed to move out and
remediate by cleaning up the ground water.

       Concerns about whether a nearby power plant also had adverse health
effects  led PODER, with others, to conduct a survey within three blocks of the
power plant, using a questionnaire on health problems. The health problems

 Symposium on Health Research and Needs To Ensure Environmental Justice	

 that were identified potentially correlated with proximity to the power plant.
 Eventually, the city announced it would close the power plant within 2 years.

       A current PODER concern is the growth of the electronics industry in
 east Austin. PODER's overall focus is helping to find safe alternatives to hazard-
 ous conditions, for which it wants EPA's help.

       Subjects mentioned during the discussion included the usefulness to
 communities of disease registries, the failure of government to support disease
 registries and include community assistance in  its epidemiologies! studies, and
 the dearth of physicians trained in public health.

       A disagreement arose as to whether ATSDR has the authority to support
 community health clinics, but general agreement was reached on the need for
 community clinics and for better health care for people living near Superfund

       At the end of the session when one participant protested that the session
 subject,  how to conduct health surveys, had been neglected; another participant
 offered to provide information to him.

                                       Breakout Sessions


    According to the tope record, no discussion was convened at this session.

                                                       Breakout Sessions

      Michele Gonzales Arroyo of the Berkeley, CA, Labor Occupational
Health Program (LOHP) spoke of the importance of providing health and safety
training in a format that workers who deal with hazardous wastes could under-
stand. Realizing that many workers have difficulty reading and writing, LOHP,
with NIEHS support, explored how to link literacy with health and safety
training. From talking with workers enrolled in literacy programs, LOHP first
learned that most were not immigrants but had grown up in the United States
and had attended high school and even, in some cases, community college.

      The suggestions of the workers included that trainers go to job sites and
ask workers about what topics to cover, what educational materials to use, and
preferred training approaches. They also suggested that written materials be
easy to read and visually appealing and that workers be asked to do periodic
evaluations of training programs. Consequently, LOHP developed visual aids,
such as a diagrammed T-shirt and local risk maps, and games for tasks such as
reviewing Department of Transportation labels.

      Ms. Arroyo stressed in summary that outreach to involve workers or a
local community is crucial and that technical information can be taught without
complete reliance on reading and writing.

      The next speaker, a labor activist and representative of the OCAW then
stated that his main message is that the power to ensure environmental safety
and health lies within the communities and the workforce together. When he
trains workers for occupations in the environmental sector, he tries to include
community members as well. Within small groups, a real exchange of informa-
tion can take place,  and community members,  as well as workers, can learn
about safety and health and their rights.

      The speaker also pointed out that industries are playing "toxic roulette"
when they do not inform workers and community members of the dangers; that


Symposium on Health Research and Needs To Ensure Environmental Justice

OSHA is only as effective as its enforcement; and that simply moving toxic
dumps to new sites is not a good solution.

      A session participant who represented Communities Concerned About
Corporations, a coalition of 90 local groups from across the country, stressed
that the power of corporations is the real issue, rather than specifics about how
to improve environmental safety and health, and that nothing will change until
workers are educated and organized into democratic trade unions that are
responsive to the community.

      Alluding to a worker who was unknowingly exposed to toxins in a Haitian
shoe factory, another participant emphasized the importance of educating people
who are just entering the workforce so they will understand their rights.
Someone else pointed out that workers in the public sector need safety training,
too; another discussant noted that worker training programs frequently fail to
explain OSHA's right-to-know regulation. This person proposed educating
management about the savings involved in good training, which lowers medical
costs, workers' compensation, and turnover rates.

      Also mentioned during the discussion were the advantage of having
strong family and community ties, as immigrants do; the possibility of using
environmental safety issues as a vehicle for advancing occupational issues; the
need for communities to understand that local production facilities must be
improved to remove toxins from their environment; the necessity of involving
OSHA in conferences like this one, especially when its standards are considered
10 times less strict than EPA's; and the possibility that communities resistant to
labor unions may be willing to accept safety training as long as the word
"union" is avoided.

                                                        Breakout Sessions

      The moderator proposed that research partnerships focus on health
problems and that research include the interests of the community. Then,
Grover Hankins of the law school at Texas Southern University and previously
a Federal government lawyer, mentioned his past involvement in a suit that led
to lower lead level standards for the States to use in determining acceptable
exposures. He is now seeking funds to mobilize a team of experts and activists to
work for environmental justice.

      A current case shows how he would like to conduct his studies.
Community members are suing a foam rubber plant in Odessa, TX, whose
emissions—including styrene, benzene, and toluene—usually blow toward a
minority community that has many health problems. When previous lawyers,
who would have received 40 percent of the settlement, wanted the community to
settle the nuisance part of their lawsuit without considering the adverse health
effects, Mr. Hankins became involved. If funds can be obtained, Mr. Hankins
already has four institutions willing to cooperate on a health effects study and
community members who are ready to be trained to do a survey. Other
community members are likely to accept a new one-page survey as  opposed to
the eight-page document the previous lawyers could not get people to respond to.

      Dr. Beverly Wright of the Deep South Center for Environmental Justice
at Xavier University described the center as a consortium of four universities
that is guided by a board composed of university and community representatives.
The project was a mutual university-community arrangement from the
beginning and was developed by 22 people at a 2-day meeting. Besides research,
the center's mandate includes environmental education. The funds that are
raised are split between the universities and the community. Currently, the
center has some private foundation support and two research projects, which are
funded through the Environmental Equity Office of EPA. One project is to
develop a means of communication to gain the trust of communities that do not
trust EPA.


Symposium on Health Research and Needs To Ensure Environmental Justice	

       An example of the problems of trust can be found in a community near
New Orleans that was built on a landfill. One Federal study reported no prob-
lem; however, the community only recently learned (through an anonymous
contact) of a 5-year-old ATSDR study that disclosed problems, such as high lead
levels in the soil. Although Dr. Wright's center has facilitated meetings between
EPA and the community, how can there be trust when Federal agencies have
known for 8 years that the people were living on top of a hazardous landfill that
catches fire in the summertime?

       Dr. Wright also mentioned that Texas Southern University has a useful
resource, a federally funded center of toxicologists, epidemiologists, and others
with the expertise needed to conduct research and quickly  provide health test

       The Xavier Center would like to expand beyond its two-person staff and
conduct training but has not received the needed grants. Dr. Wright observed
that universities seem to be favored to  get grants and also noted that anyone
interested in applying for a grant should  realize that since environmental equity
counts seven points in the scoring, developing a citizens' advisory board would
give an application seven additional points.

       When one session participant asked how to interest her university in
advocacy,  the suggestion was made to involve not just the university's leadership
but also students, through fellowships and internships. Stressing community
service is another approach. One way to get started in community  work is to
contact the NAACP.

       Other discussion topics included the following: the gap between physical
and social scientists, with the former likely to behave arrogantly; the usefulness
of approaching a community through the social worker model, stressing com-
munity needs rather than one's own agenda; the need to involve local health
departments in delivering services; and suspicions about  scientists  not doing
promised research and State governments favoring industry.

                                                       Breakout Sessions

      Steven Schwartzberg, M.P.H., Director of the Alameda County, CA,
Lead Pollution Prevention Program, emphasized involving the community in the
planning process of environmental health education and taking a broad view,
instead of concentrating only on lead poisoning or any other single concern. A
special aspect of his program is that it combines housing and health staffs. At
first, in his example, community education and involvement were neglected. The
problem concerned a yellow powder seeping out of cracks in the basketball court
at a park in east Oakland built on the former site of a battery manufacturer.

      Although tests eventually showed the powder to be arsenic and zinc, the
city aroused the community by claiming the presence of lead in the park.
Mr. Schwartzberg found this ironic because lead-contaminated housing is a
much more serious problem in Oakland. When blood lead levels of children from
a nearby school were measured to check for possible lead exposure from the
park, delays in testing made any tie to the park meaningless. The levels detected
were in the normal range for all but 6 of 626 children tested. For those six, the
problem turned out to be high lead levels in their homes. An irony is that a
school play yard near the park had 100 times the lead level of the park.

      Some more recent positive steps are that the city is paying to train 15 to
20 community people to work on remediation of the park, other community
persons will  do door-to-door interviews regarding lead in the community and
access to health care,  and the community will form a  health and environmental
safety committee that will be a resource and teacher on community needs.
Mr. Schwartzberg hopes to replicate this process elsewhere.

                                                           Breakout Sessions

       Dr. Joan Cranmer of the University of Arkansas Medical School
addressed how toxic materials affect children, from embryo through adolescent.
Many chemicals cross from mother to fetus through the placenta, especially
low-molecular-weight and lipophilic materials, and the fetus lacks detoxifying
enzymes and ways to excrete toxins. The rapidly multiplying fetal cells, including
brain cells, are targets for toxins. Damage can include malformations, overall
growth retardation, fetal death, and subtle functional and behavioral changes
evident only after birth.

       Children are likely to receive greater toxic exposures than adults because
of their higher respiration rates and proportionally greater surface areas and
intakes of fluids and  food. Furthermore, their barriers to toxic absorption and
detoxification systems are still not fully developed. Some are exposed to pesti-
cides when accompanying their farmworker parents to the fields.

       The three body systems most at risk from toxic exposure—nervous,
immune, and endocrine—initially compensate for the exposure, with latent
effects manifesting later. In Dr. Cranmer's research on methyl mercury
exposure in fetal rats, a silent toxicity occurred: The exposure caused the rat
brain tissue to develop less dense than normal. This damage showed up only
much later in life when the symptoms of degenerative diseases appeared in the
aging adult rat. Similarly, in one human population that ate a great deal of fish
containing mercury, the  children appeared all right, but older members of the
group showed problems.

      The list of chemicals (including estrogenic pesticides) known to affect the
endocrine system is growing, as are rates of breast and uterine disease, infertil-
ity, miscarriage, and premature puberty. The rates of neurodegenerative dis-
orders  are also increasing.

      When session participants asked about testing farmworkers and their
children before and after pesticide exposure, the speaker said that such

 Symposium on Health Research and Needs To Ensure Environmental Justice   	

 monitoring, which is required but not implemented, would show only the effects
 of low-level exposure whereas high-level exposure is the issue. Furthermore, 20
 years ago, scientists predicted what is happening now.

       The conditions for conducting research are another problem: Usually, as
 with the pediatric research grants available now, no provision exists for fixing
 the problem once the study is completed—such as by education or prevention of
 exposure, addressed in a culturally sensitive way. A farmworker in the audience
 corroborated that there was no help for her after she was studied for toxic
 exposure. Participants agreed strongly that research must include helping
 affected persons and giving them a voice in how research money is spent.

       Joy Carlson, M.P.H., Director of the Children's  Environmental Health
 Network (CEHN) in Emeryville,  CA, told how this national network was formed
 1 year ago to meet the need for data on other toxic exposure besides lead
 poisoning in children and for emphasizing the field of pediatric environmental
 health. Last year CEHN and NIEHS held the first national workshop on pedi-
 atric environmental health research.

       Two  needs are medical training in pediatric environmental health and
 special regulations on toxic exposure in children. One approach is to work
 toward including on medical board examinations questions concerning environ-
 mental exposures in children, because medical schools would then be more likely
 to teach the subject, for which a curriculum is available.

       CEHN wants to make environmental health a part of primary health care
 and  to change research from focusing on the cellular effects of toxic exposure to
 targeting pollution prevention technology and land use planning. The environ-
 mental justice movement could help by encouraging research and training
 collaborations between medical researchers and environmental scientists.

                                                      Breakout Sessions

      Focusing on ways to clean a house, particularly to rid it of lead, session
participants considered the use of water and trisodium phosphate (TSP). Partici-
pants also looked at problems with limited research and education on cleaning
methods and outright misinformation from government officials. One experi-
enced attendee preferred scrubbing well with pure water to using TSP. Clean
rags should be used for rinsing, and rags and mop heads should be discarded.
Use of squeegees is undesirable because contaminants remain in the sponge.
Concerns about TSP included the fact that it is a corrosive material and that
using phosphates can damage waterways.

      Regarding research on cleanup methods, an attendee faulted one existing
study for unrealistically testing solvents on stainless steel, which is not a major
component of homes. Regarding education, one parent reported having been
given the impractical advice to damp-mop her house daily—a difficult task for a
nursing mother with toddlers. Someone else agreed that this advice was an
impossible burden and called it a "blame the victim" strategy.

      A mother with a 10-month-old infant who had high blood lead levels
recounted a tale of bad advice from a State official who told her to use a heat
gun and  abate the problem herself. Because the advice did not include a warning
to contain the lead dust caused by using the heat gun, the result turned out to
be higher lead levels in the house and the infant.

      Attendees wanted to provide this session's information to the conference's
core groups.
    Only a fragment of this session was recorded on the session's tape.

                                                           Breakout Sessions

      Contrasting the "Eurocentric" view, which tries to identify the effects of
each single toxic chemical, with the holistic Native American view, the first
speaker declared that our system will have to change, because the knowledge we
are gaining about multiple toxic chemicals is on a collision course with our
environmental laws, regulations, and policies that focus on single chemicals.

      The speaker said the term "multiple exposures" includes exposure to
(1) mixtures of chemicals; (2) multiple chemicals that all target a single receptor
or system; (3) chemicals entering by multiple routes, e.g., inhalation and inges-
tion; (4) toxic chemicals that worsen the existing burden of chemicals the body is
already carrying; and (5) anything new affecting someone who already has a
compromised immune system as a result of a medical condition, the use of drugs,
or previous exposure to toxic chemicals.

      Several  approaches contribute to the current, single-chemical view.  Risk
assessment studies are done one chemical at a time. Thus, instead of phasing out
all chlorine-containing chemicals, EPA prefers to "ban, cancel, or suspend
specific chlorinated compounds that exert a deleterious and widespread environ-
mental impact." Moreover, proof is needed of a cause-and-effect relationship
between a single chemical and a single health effect before action can be taken.
Thus, the evidence that dioxin in Columbia River fish interacts with other
substances and kills bald eagles has not led to action to help the Native Americ-
ans nearby, who eat 15 times the amount of fish that was used in the dioxin

      Further, the requirement that a single "bad" chemical must  be identified
before any action is taken against a hazardous substance leads to such situations
as the inability to ban the herbicide 2,4-D, since its association with cancer
might be attributable to other chemicals present in small amounts in this
herbicide preparation or to other chemicals the subjects had been exposed to
throughout their lives. Yet, risk assessment studies assume that the people who

 Symposium on Health Research and Needs To Ensure Environmental Justice	

 are being studied start off as dean, healthy organisms, an unrealistic

       Instead, we  must base our policies on the broad reduction of the use of
 toxins that will potentially affect our health. These policies would lead to laws
 reducing the use of toxins, particularly pesticides, and to mandatory recovery
 plans. We must also recognize that because of differences in biological suscepti-
 bility and in previous toxic exposures, we can never know how much of a given
 chemical is safe.

       Rather than risk assessments, we should conduct mandatory alternative
 assessments for the least possible discharge of toxins into the environment,
 asking which technological, social, and economic options avoid the use of toxins.
 Examples include closed-loop production processes, total removal of previously
 deposited toxics,  and banning the production of toxic wastes. Research must find
 ways to  protect people from toxins that remain in the environment.

       Before participating in research, communities affected by environmental
 toxins should find out whether any action will be taken to help the community if
 environmental damage is found. Research should not serve as an excuse to delay
 action, and researchers must take more responsibility for preventing exploitation
 of study participants.

       The  second speaker's thesis was that studies are needed on the role of
 environmental factors in the development of asthma. She described asthma as  a
 multifactorial disease, saying that children with asthma who are poor are more
 vulnerable to air pollution and other environmental insults than children with
 asthma of other socioeconomic backgrounds and that it is difficult to distinguish
 environmental contributors to asthma from other risk factors.

       Millions of people are affected by asthma (the most common chronic
 respiratory disease), including 15 percent of all children. Billions of dollars are
 spent each year on health care related to asthma, with nearly half spent on
 indirect costs, such as days missed from school or work and premature mortality.

       Both morbidity and mortality rates for asthma are increasing worldwide
 for white and black females and black males, with blacks having an  overall
 mortality three times higher than whites. Air pollution (ozone, sulfur dioxide,
 aerosols, and particulate matter) is definitely associated with symptom worsen-
 ing. Children are more vulnerable to these  effects than adults because children
 spend more time outside, are more active, and are more likely to breathe
 through  their mouths, bypassing nasal screening mechanisms.

       The reasons  that poor people are more vulnerable to asthma, although
not fully understood, are likely to include episodic health care; limited health
education about asthma; use of gas, kerosene, or wood stoves for cooking and
heating;  exposure to mold, dust, and cockroaches; and lack of air conditioning to
ease symptoms.

                                                             Breakout Sessions
       Session participants noted that black communities are concerned about
the causes of asthma; every player on many urban Little League teams has
asthma; CDC research in Los Angeles showed a clear relationship between ozone
levels and symptom severity in children; and as asthma increases, the factor that
has changed over time is air pollution. One participant speculated that the
difference in incidence between blacks and whites might be attributable to the
fact that so many blacks live in urban, air-polluted areas.

       The third speaker, an environmental engineer for EPA, described how the
engineers and technicians who were EPA's first employees in 1970 turned to
technology to clean up the water and the air. They were not helped by health
departments because the medical professionals who ran those departments were
not interested and had no training in environmental health. Now the removal of
the last 5 to 10 percent of heavy pollutants will cost the same as did the removal
of the initial 90 percent.

       During general discussion, one session participant emphasized how poor
people and people of color are more likely to be affected by environmental
degradation because of their generalized susceptibility. He also mentioned the
initiator-promoter cancer model; that is, certain chemical exposures initiate
cancer and other chemical exposures promote its growth.

       When asked what to do for communities instead of research, the first
speaker proposed that the most important question is how to remove the
problem from the community. One participant  agreed with the speaker that
research must address multiple exposures, citing the example of an industry
releasing  multiple harmful materials in its emissions. Another participant said
that feasibility studies must include the costs of adverse health effects and
shortened lives in the community affected by a proposed industry. Someone else
called for  adequate health assessments of communities impacted by multiple
facilities, such as Alton, MS, where there are 11 different waste facilities.

       Other questions included the following: Who should be responsible for
ensuring that safe substitutes are found  for hazardous chemicals? Why don't
hospitals recognize their responsibility to provide asthma education. When will
EPA focus on what enters the pipe instead of cleaning up at the other end? (EPA
staff said the law required their end-of-pipe focus.)

      Session participants also noted that despite EPA's accomplishments,
various chemical uses  have increased, and air pollution has worsened in some

                                                          Breakout Sessions

       Lucy Billings of Bronx Legal Services urged activists and people endan-
 gered by lead exposure to work for legislative action on behalf of tenants exposed
 to lead paint and for regulatory action to make landlords comply with lead
 exposure regulations. Regulators appear to be unwilling to enforce compliance
 and do not, for example, impose penalties.

       Furthermore, weakened Federal statutes no longer require total abate-
 ment of lead paint once it is detected. Abatement is now required only when a
 housing unit is rehabilitated using $25,000 or more in Federal funds. Moreover,
 current regulations allow for containment of lead paint rather than total removal
 and do not specify that the landlord is responsible for getting the work done,
 which methods of containment are permitted, or the time frame in which
 containment must be undertaken.

       As an alternative, many activists are turning to public nuisance ordi-
 nances or to local or State statutes that require the immediate correction of
 hazardous conditions in housing. Impoverished persons needing representation
 can use city, county, or state legal services programs even though program staff
 may have been previously unfamiliar with lead problems.

       Dennis Livingston of the Baltimore Jobs in Energy Project told the
 session that he was motivated  to conduct lead poisoning abatement work when
 he realized  that the weatherization activities his company carried out could
 cause lead exposure. He recommended against development of a lead cleanup
 industry, favoring instead a holistic approach that takes into consideration not
just lead paint, but the moisture that can damage the paint. The holistic ap-
 proach requires examining a building's heating and cooling systems and air
 exchange, which are skills a "weatherizer" acquires over a long time. A weather-
 izer can quickly learn lead containment and abatement procedures and can test
 for and treat all types of toxicity—carbon monoxide, radon, asbestos, and lead.

 Symposium on Health Research and Needs To Ensure Environmental Justice  	

       Weatherizing companies are also community-based and can monitor the
 cleanup for years. They can hire and train residents to be technicians and
 supervisors in a new trade. They would be sensitive to working in a way that
 minimizes displacement of residents, who cannot afford alternative living

       Marty Sonnenfeld of Innovative Empowerment Strategy explained that
 the beneficiaries of lax regulations concerning lead exposure include landlords
 who do not have to pay for proper and safe abatement—government agencies
 must pay for abatement work when landlords fail to do so—and the real estate
 community. To counteract this opposition to enforcement, community members
 need to organize around as many relevant issues as possible, including public
 health, education (since lead poisoning causes learning disabilities), housing,
 children's rights, and civil rights.

       Mr. Sonnenfeld used New York City's 12-year experience with a strict
 lead poisoning control law as an  example of problems and successes. When
 health department staff were hostile and racist toward poor people and when
 they initiated programs without  consulting the community using poorly prepared
 pamphlets and procedures, children continued to be poisoned.  The speaker and
 his associates developed effective literature, worked with local  organizations, and
 met parents at local day care sites, all of which helped promote successful
 community programs. One sad note is that one city mayor, who had advocated
 lead poisoning control, opposed and delayed a legal case that would have ad-
 vanced such control. The mayor's opposition presumably was because of the cost
 to the city if it admitted liability.

       During the general discussion, one EPA staff member worried about how
 to make the issue understandable to disadvantaged parents. He also noted that
 HUD has an enormous task, inspecting all housing units built  before 1978 to
 detect whether renovation is needed to eliminate lead paint. In reply, a session
 participant said that the housing movement must get organized: Basic outreach
 programs can make the issues understandable, and  community involvement is
 essential. One example is a community where children testifying before the city
 council swayed the vote.

       Participants mentioned other problems: Residents do  not want to consider
 whether their beautiful old homes are full of lead; the thought of having to
 renovate an entire home panics people; when some community activists tried to
 obtain funding to educate people, they were told that only industrial hygienists
 or biologists were qualified to do that; and the regulations requiring all pediat-
 ricians who accept Medicare patients to do lead screening are not enforced (many
young children use emergency rooms rather than pediatricians anyway). Another
issue is that the official figures on lead poisoning are misleading because too few
 children are being tested.

       Suggestions included that organizers should spend a lot of time with
people in affected communities; members of Attention Deficit Disorder (ADD)


                                                             Breakout Sessions
advocacy groups (many children with ADD are victims of lead poisoning) should
be invited to participate; and veterinarians should be alerted to the possibility of
lead poisoning in pets.

      Another session participant provided one last demonstration of govern-
ment insensitivity to community involvement, reporting that HUD is supposedly
drafting new guidelines on inspections, abatement, and risk assessments, but
several leaders of community groups at this conference have not been contacted
and do not know of anyone who is participating in the formulation of these

                                                           Breakout Sessions

      First, Dorothy Morris from the Toxic Victims Assistance Corporation in
New Mexico described health problems related to her former employment in the
electronics industry. Later, several audience members spoke about their own
experiences also as workers in the electronics industry. One participant described
an incident 10 years ago in which more than 200 people working in one electron-
ics plant with certain chemicals came down with similar respiratory and neuro-
logical symptoms. Another participant reported that she had used solvents that
she now knows are associated with permanent neurological problems. Someone
else reported feeling "high" and hallucinating after exposure to chemicals,
behaviors that could endanger other persons as well as the workers themselves.

      Dr. Bruce Chin of the University of Michigan said that since the
symptoms of the 200 workers did not match those known to be linked to single-
chemical exposures, they might be suffering from a multiple chemical syndrome.
Doctors could try to establish a link between the chemicals and the symptoms
and inquire whether the workers felt better away from the work site. In the
actual situation, results of a case-control study conducted by toxicologists were
sealed and not shown to the victims. The person reporting on this problem had
been told that the chemical she was exposed to is still in her body and that any
significant change in her metabolism could exacerbate her lingering symptoms.

      It appears that some of these companies were not in compliance with
OSHA's guidelines for permissible exposure levels for solvents and were not
using well-known correct handling practices. Poor recirculation of air by indus-
tries and in airplanes aggravates indoor air pollution.

      Another exposure problem at work sites results from a combination of
certain medications with certain workplace chemicals, according to one session
participant who pursued a lengthy lawsuit against her employer without  the
cooperation of her doctor. Another worker suggested that the difficulty of finding
doctors who  understand occupational exposure to toxins could be overcome by
creating clinics that also serve as research sites. California's Silicon Valley, with
its concentration of high-tech industries, would be a perfect location for such a
clinic-research center combination.

 Symposium on Health Research and Needs To Ensure Environmental Justice	

       With regard to protective clothing and chemical residues, Dr. Chin noted
 that showers should be provided for the workers and work clothing should not
 leave the work site. Another session participant said she regularly took such
 clothing home and now wonders if her two grandchildren's birth defects are
 related to the resulting chemical exposure that her family received. (The woman
 added that the company now has a policy of requiring workers to change into
 their own clothes before returning home.)

       Dr. John Sheehy of NIOSH mentioned that the idea of an entitlement
 fund is being adopted widely and any new industries that arise must set aside
 such a fund to be used in case workers are injured.

       In a presentation on lead exposure in the workplace, Dr. Sheehy noted
 that standards to protect workers from lead poisoning have been in place for
 years, but one California study found that 85 to 90 percent of businesses in-
 volved in lead exposure did not comply with these regulations and had not
 suffered any consequences for noncompliance. A contrasting report of the lead
 reclamation industry found that companies spend an average of $15 million to
 revamp their workplaces and improve their ability to protect their workers.

       Bridge repair work represents a growing new industry in which lead
 exposure is a potential hazard,  and NIOSH is looking at several new systems
 designed to minimize exposure  to lead paint on bridges. NIOSH also was able to
 help a Colorado radiator shop where workers using lead solder were found to
 have high blood levels of lead. NIOSH designed and built a relatively inexpensive
 device that draws away fumes and circulates fresh air.

       Dr. Sheehy noted that the job was only half finished  when the device
 proved successful; it was equally important to publicize its success  so that other
 businesses could provide the device to their workers. This was done by develop-
 ing an easy-to-read workbook and contacting the trade association and medical
 personnel through relevant publications.

                                                          Breakout Sessions

      Elmer Chenault from EPA first provided from his own experience a
 classic example of a community 6 miles north of Denver, CO, that took action
 against its pollution problems. Home to a 100-year-old lead smelter, a rendering
 plant, an electric power generating facility, and an abandoned public housing site
 with soils contaminated with heavy metals, the community is also close to 5 of
 Colorado's 15 hazardous waste sites and bisected by two interstate highways
 that greatly affect air quality. All residents of the small community are poor or
 people of color or both.

      A 1991 environmental equity workshop provided the community with
 up-to-date knowledge on relative risks, options for reducing those risks, and
 pointers about accessing the government for help in fighting its pollution
 problems. Subsequently, EPA hired an independent contractor to help the
 residents, who did not trust any level of government.

      The lead smelter, producing lead, arsenic, and cadmium, was shown to be
 a major cause of environmental pollution despite its installation of high-
 efficiency collectors. Ground water and garden soils were highly contaminated
 with heavy metals. In 1993 the community was awarded $27 million in its
 lawsuit against the lead facility—the largest amount ever awarded in an environ-
 mental case in Colorado—and the State health department now has a suit

      The community's case also led to a medical monitoring program to screen
both current and former residents for lead poisoning. Both the monitoring
program and the contractor who was hired to clean up the site must comply with
the court's ruling to employ residents in that effort, if residents so desire.

      Cadmium production at the smelter has been halted, primarily for
economic reasons, and the company owning the smelter is attempting to reduce
the use of other hazardous chemicals in its extraction process.

 Symposium on Health Research and Needs To Ensure Environmental Justice	

       Dan VanderMeer from NIEHS asked participants to advise NIEHS on
 how to apportion its funding ($264 million this year). Funds can be allocated to
 NIEHS research on the relationship between people and the environment,
 training of researchers, and communication of research findings to the public.
 Human research studies (such as epidemiological studies and clinical trials) are
 the most expensive and time consuming. Toxicology and basic biology studies can
 be useful even though they may not appear relevant to lay people. A panel of
 experts helps NIEHS rank proposed research projects.

       Calling for balance among studies, the speaker gave an example:
 Removing dioxin from the environment could take many years and cost billions
 of dollars, whereas quick, inexpensive research in basic biology might uncover a
 way to prevent cells from absorbing dioxin, saving people from toxic exposure.
 He stressed that NIEHS needs to explain such choices and on the whole com-
 municate more with the public.

       One session participant then commented that risk assessment studies are
 all too often based on unsubstantiated data. Another asked about availability of
 NIEHS data; the speaker said the entire toxicological database will be made
 available to any users of certain  computer networks. A third participant suggest-
 ed that a new criterion for funding research should be that the studies must
 involve health effects in communities impacted by pollution problems.

       Dr. Sylvia Tesh of the University of Michigan spoke of the benefits of
 community participation in environmental issues—such as furthering the cause
 of democracy, allowing community activists to become  experts in their own
 defense and in environmental issues, and providing decisionmakers with impor-
 tant perspectives and values that they would not otherwise get. However, she
 also cautioned that community groups should not  formally participate with
 government agencies, saying that it may be better to stay outside the process
 and organize, protest, and lobby the real decisionmakers to make the right

       Dr. Tesh's reasons for not participating include the following: Formal
 participation of the community can be a means to  legitimize decisions that the
 community opposes. Community groups can never have power equal to that of
 government agencies. Community groups open themselves up to the charge that
 they do not really  represent the entire  community. Then, if several different
 groups must participate, this dilutes community power even further. In addition,
 community participation sets a precedent by having people who were not elected
 take part in decisionmaking and represent others instead of having elected
 officials, answerable to their constituencies, make the decision.

      One participant disagreed with Dr. Tesh, saying that communities must
be involved early in the process of fighting an environmental injustice, that
 communities are not helpless, and that in many cases they can have an equal

Next Page or group of Pages Next Occurence of Search Term