Conference Report On:

“Dialogues for Improving Research Ethics

in Environmental and Public Health”

May 30 – June 1, 2003 at Brown University Providence, RI

Compiled by: Dianne Quigley Principal Investigator Tel. (315) 443-3861; email:diquigle@syr.edu www.researchethics.org

Conference Report on a “Dialogues for Improving Research Ethics in Environmental and Public Health TABLE OF CONTENTS:

Conference Background and Sponsorship. ………………………………………… 2 Conference Purpose and Objectives ………………………………………………… 2 Summary Overview of Conference Panel Presentations…..……………………….. 2 Conference Panel Presentations……………………………………………………... 6 (1) Research Protections and Institutional Needs for Community Research ………… 7 (2) Promoting Community Rights in Research .……………………………………… 10 (3) Reshaping Science for Environmental and Public Health …………………….. .. 16 (4) The Status of Funding for Community-Researcher Partnerships ………………… 22 (5) Institutional Review Boards and Institutional Protections ……………………….. 26 (6) Research Ethics and Community Partnerships. ……………………………………. 32 Conference Plenary Discussion: Outcomes and Recommendations………………… 40 Conference Participants and Feedback……………………………………………… 48 Conference Postscript………………………………………………………………… 50 Conference Participant List …………………………………………………………… 51

Acknowledgements: The Collaborative Initiative for Research Ethics and Environmental Health is funded by a grant from the National Institute of Health, National Institute of Allergies and Infectious Disease Grant Program for Research Ethics – T15 A149650-01 We thank Linda Silka, Carol Williams and Phil Brown for their editorial assistance with this report. We also thank Dawn David of the Akwesasne Task Force for the Environment and Doug Taylor and Jessica Henry of the Southeast Community Research Center, Atlanta, Ga. for their assistance with conference planning and organizing. We thank all the conference speakers for their rich contributions for improving research ethics.

1

I. Conference Background and Sponsorship The national conference “Dialogues for Improving Research Ethics in Environmental and Public Health” was sponsored by the “Collaborative Initiative for Research Ethics in Environmental Health” as a part of its project activities under a National Institute of Health grant program for Short Courses in Research Ethics. The Collaborative Initiative is administered through Syracuse University and brings together an interdisciplinary team of public health, social science, biomedical and behavioral researchers, including several ethicists in public health from four collaborating universities: UMASS, Lowell, University of North Carolina, Chapel Hill, Tufts University and Brown University and the Southeast Community Research Center, Atlanta, GA. The interdisciplinary team all are involved in community-based participatory research projects and collaborate with community-based researchers in promoting project activities. The project focuses on research ethics with culturally-diverse populations (i.e. Native Americans, Southeast Asians, African-Americans Chinese and Hispanic populations) and community health studies. The investigators not only develop courses with an emphasis on the problems and challenges of culturally-diverse populations, but each investigator produces important case studies and articles (see website:www.researchethics.org). The conference was organized in the project’s third year with this purpose and objective. II. Conference Purpose and Objectives This conference sought to bring together community representatives, academic scientists, government researchers and funders in the field of environmental and public health to facilitate a dialogue on important research ethics issues. Through case study presentations and panel discussions, the conference organizers sought to generate new recommendations, tools and resources for dealing with the difficult challenges of key research ethics issues that were identified by the interdisciplinary team and community health organizers through the project’s outreach and training activities. After two years of the project team’s outreach of short courses to researchers and community populations in other regions of the United States, important feedback was gained about research harms to communities, skills and training needed by researchers in the field, and ethics policy recommendations that need to be promoted. These six panel topic areas had emerged as priorities for conference panels from our short course presentations (1) Research Protections and Institutional Needs for Community Research (2) Promoting Community Rights in Research (3) Reshaping Science for Environmental and Public Health (4) Perspectives on the Status of Funding for Community-Researcher Partnerships (5) Institutional Review Boards and Institutional Protections and (6) Research Ethics and Community Partnerships. The highlights of these panel presentations are discussed below. III. Summary Overview of Conference Panel Presentations – Issues and Needs Thirty-three panel speakers were recruited for the conference panel topics from around the country. This included racially diverse researchers (Native American, Asian, African-American, and Hispanic) as well as a mix of government, academic and community-based researchers in the field (see speaker list at www.researchethics.org). We prepared a conference booklet of abstracts for the speaker presentations which can also be found on our website. A. Research Protections and Institutional Needs This panel presentation highlighted community-based innovations needed for dealing with community research harms. Innovations are needed that will overcome the conduct of scientific research that offers no benefits to communities, the exploitation of community members in research activities, and the failure to inform communities of risks and benefits of research. Panel presentations provided models of community control (i.e. a community research councils) and

2

described successful strategies in community collaborative participation that have been developed by two community-based research programs. A tribal group discussed how their community research councils function to allow and disallow research depending on whether the research is consistent with a set of community criteria. Additionally, community reseach council exercises control over data ownership and dissemination. Also discussed was the model of a regional center in the Southeast that provides infrastructure support to assist communities with research protections and provides information to communities on participatory strategies for engaging in health research with academic researchers. Another speaker highlighted the important role that community members can play on institutional review boards (IRBs) with federal agencies and universities to ensure ethical research. Discussants also noted the complexities that remain to be addressed in building a community around human subjects, such as defining affiliated and unaffiliated members; victims, subjects, activists, geography and participants. B. Promoting Community (Group) Rights in Research This panel held two sections; the first section provided an overview of the complexities in establishing community rights for research that are extensions of individual rights. The second section stressed community field experiences in seeking rights in research. In the first section, the project team members debated the need for community rights. The project’s principal investigator began by arguing that the ethical principles that exist for individual rights should be extended to communities. A list of ethical innovations developed from a compilation of community health studies in Native communities demonstrated how beneficence, justice and autonomy can be protected by (1) training community members on risks and benefits of standard health research methodologies; (2) developing partnerships with community members through research design, training, data collection, shared control and infrastructure support; and (3) the integration of the local knowledge of the community with the more quantitative research data. The project ethicist argued that at present no established principles on group rights in research exist. In trying to establish them, a number of moral complexities face us, such as: when does a group become worthy of separate ethical consideration? How should informed consent guidelines be modified to take into account particular group characteristics? How does the researcher deal with competing group representatives from one community? How can the problem of community stigmatization from research results be addressed? How should questions of ownership of data and results be addressed? How are individual rights protected when the community owns the data? The third speaker, an anthropologist, has written of the need for emergent ethics in situational contexts where there are different power differentials and where cultural and racial differences exist in community partnerships. Codes of ethics can become problematic when applied to many of these differing research contexts. A second section focused on community rights in research brought forth field stories from community-based organizations that have engaged in collaborative research with academic and government scientists where questions have been raised about how community rights can be protected. Struggles for shared control over research were highlighted such as when a research department uses a community project for its benefit and in doing so override community consultation and control mechanisms. Additionally, communities (particularly culturally-diverse communities) become, in effect, guinea pigs for multiple research teams that provide few benefits to the community and frequently do not even report findings back to the community. Mechanisms for control were described such as creating a research center administered by a community controlled organization and inviting scientists and policy-makers to be part of the governing board .Some important ethical challenges were raised here for community rights, including problems of community stigmatization from environmental contamination results, issues of

3

access to state controlled cancer and/or community-generated data, and the responsible reporting of data back to study participants. C. Reshaping Science for Environmental and Public Health Two sections of this panel were conducted and included presentations on Native science methods as models for more integrated, holistic research approaches. Additionally, several presentations highlighted issues in western science that address limitations of “objectivity” as defined by mainstream science and the courts. The Akwesasne multi-tier definition of health incorporates a research design that includes cultural and traditional practices as a part of the research effort. A risk assessment study that is culturally-based may produce findings that go beyond measuring levels of PCB in fish to include losses of language, cultural practices, and relatedness with the earth. Research methods may stress conversing with elders, radio shows and mentoring relationships. Similarly, a research model for studies of fish contamination from the Yakama Indian Nation is entitled the “medical ecological model” (or medicine wheel) and includes four interrelated components: ecology, epidemiology, cultural study and clinical medicine. Such an approach produces a rich data collection that reflects the interaction of these components. Another speaker described basic principles of Native science as written by Gregory Cajete and how objectivity is gained through subjective processes. She highlighted the need for community members to become local knowledge-producers in order to inform this type of objectivity. Another speaker described a new method in the practice of western environmental health science, that of “weight of evidence” whereby no single study is used to determine causality but rather a number of studies including qualitative data become a part of a subjective weighting system. This approach is focused on a social level and not on how to prepare for court law suits that limit how science is used. Another speaker then described the Daubert challenges as the way courts will decide causality when faced with uncertainties in data; courts usually rely on reductionistic methods and frequently keep out testimony based on innovative scientific methods that incorporate the community reporting of health harms. D. The Status of Funding for Community-based Participatory Research (CBPR) For most community groups seeking to increase the ethical research taking place around the country, the biggest challenge they report facing is the lack of funding support for CBPR. Two speakers from federal agencies that support environmental health research (i.e., NIEHS and EPA) discussed the ways in which their agencies have committed to CBPR and they spoke of successes that have emerged from their programs such as community empowerment, community capacity-building, and policy impacts such as institutional changes to scientific practices and funding priorities. Some challenges in funding decisions were discussed such as the performance of evaluations and providing greater assistance to partnerships in order to ensure their success. A community speaker highlighted the important need for communities to have control over research funding to ensure its ethical outcomes. An academic speaker reflected on the benefits and challenges to academics involved in CBPR research projects. Academics involved in CBPR usually lose peer support in their department but nonetheless, the speaker recommended the need to create institutional change in universities to legitimize CBPR and bring more university support to the problems of communities. E. Institutional Review Boards (IRBs) and Institutional Needs Four presenters highlighted the importance of community participation on IRBs and the need for IRB guidelines to include protections for communities. A speaker from Indian Health Service (IHS) presented the work of IHS IRBs focused on maintaining the important principle of “Respect for Communities;” this principle should include a set of guidelines that require evidence of community (tribal) approval, cultural sensitivity, community partnerships in each stage of research (including publication), and a listing of benefits to the communities from the research.

4

Another speaker highlighted concerns about strengthening the ways in which lay involvement is integrated into academic IRBs; thoughtful attention needs to be given to how lay involvement is defined, how community members can participate equitably with academic representatives, and what training is provided. Other models of IRBs should be considered that might better ensure the community’s independence from academic control and provide more accessibility to the research process for communities. Concerns were also raised about informed consent for population studies. Who are the appropriate providers of consent, particularly in very culturally-diverse communities? How is training conducted on the benefits and risks of health studies, as well as the burdens and benefits of informed consent? Two other speakers echoed concerns about a clash of interests and values when community people participate on academic IRBs. It was noted that there can be a disconnect about important values represented by CBPR; academics may need to be trained on CBPR and communities may need greater training on IRBs and their processes. Also there is a need for relationship-building between two groups. Power differentials can be hidden by so-called “objectivities”. There are conflicts of interests if universities are dependent on certain funding sources. Lay person is too broad a term when there are multiple kinds of research (environmental, public health, genetic) and multiple needs for representation (those with certain diseases, those from certain neighborhoods). It is too problematic to develop a ‘one size fits all’ prescription for community involvement on IRBs. These challenges require investments of training funds to IRBs, funding for community involvement in IRBs, a process to address inequities and power differentials on IRBs and guidelines to overcome conflicts of interests between community needs and university funding needs. Many recommended the need for community review boards to ensure ethical research. F. Research Ethics and Community Partnerships Key ethical challenges continue to emerge within community-academic partnerships. These issues include how partners seek to balance power, how academics gain community input and integrate community knowledge, how to build capacity and promote institutional change define the work of partnering. This panel held three sessions with six speakers who addressed many of these issues based on their personal experiences in the field. Community-based speakers highlighted the importance of including scientific research activities in their campaigns for social change that centered on improving the quality of life in their communities. Urban speakers spoke of common issues with contamination through air pollution from waste facilities, diesel exhaust, and other industrial activities that expose multi-ethnic city neighborhoods. Technical studies of air monitoring, environmental sampling and mapping of disease incidences often engage these communities in partnerships with universities. Speakers outlined important considerations they have encountered in working with research partners, including the need for up-front agreements about community control over the process, skills-building for community members (such as in youth projects), inclusion of qualitative data that captures the community’s experience with contamination, the identification of concrete actions that will benefit the community from the research, and translation of research results for the community. Both academic and community presenters highlighted the difficult challenges to partnerships from unequal power differentials, specifically white privilege issues and powerful academic institutional values that can dominate the research interactions. Mutual trust and understanding must be exercised through listening and a sharing of each other’s contexts and values. Partners need to be aware of each other’s daily constraints in meeting common goals and have a shared accountability to each other. One speaker stressed a need for structures and norms to guide processes of working together and offered two case examples of this. Several spoke of celebrating our differences in coming together and allowing conflicts to emerge as part of a dance of sharing power together. Most supported the need for resources and time in developing partnership relationships before research begins. Such an approach would allow culturally-diverse

5

communities to ask research questions that derive from their own experience and not merely from previous scientific studies. One speaker urged an opening of “hidden transcripts” of community members who lack the trust in researchers to reveal their true opinions and needs in the partnership. One academic speaker stressed the importance of attending to building research partnerships from the very outset and addressing the “when” in the research process as well as the “what.” (e.g., at the very outset communities and researchers developing hypotheses together, residents should not be objects of research but should be involved from the very outset in setting research agendas, developing the research questions, and conducting the research.) In other words, community partners should be participants in all project phases. Another spoke extensively about the importance of using qualitative methods (i.e. community narratives and data collection) to enrich the scientific goals of research; such methods should include “member validation” processes that allow community members to review and critique initial research data analyses. Several speakers emphasized the benefits to universities and scientists of community research studies and that institutional reform is needed in universities if more CBPR activities are to take place. IV. Conference Panel Presentations – Full Report This section includes a full report of conference presentations from transcriptions, notes and papers from speakers. The list of speakers and presentations is included below, followed by transcriptions and summaries of their presentations. Panel One - Research Protections and Institutional Needs Treena Delormie and the members of Onkwatakari’tahtsheran Health and Social Services Research Council, Kahnawake, “Community Models for Building Research Protections” Jodi Sugerman-Brozan, Alternatives for Community and Environment, Roxbury, MA, “Building Successful Community-University Research Collaborations” .Susan Rose, Human Subjects Program Manager, U.S. Dept. of Energy, Wash. DC, “Community as Community IRB Member” Doug Taylor, Director of Southeast Community Research Center, Atlanta, GA, “Building Networks to Assist in Community Research Protections” Panel Two - Promoting Community (Group) Rights in Research Section One: Project Team Presentation from the Collaborative Initiative for Research Ethics in Environmental Health on Complexities of Establishing Ethical Guidelines for Group/Community Rights Dianne Quigley, Principal Investigator for Collaborative Initiative for Research Ethics in Environmental Health, Syracuse University Ann Gold, cultural anthropologist, Syracuse University. Ernest Wallwork, ethicist, Syracuse University Section Two: Field Experiences with Gaining Community and Group Rights Omega Wilson, Director; West End Revitalization Association, Mebane, NC, Julia Brody, Director of Silent Spring Institute, ”Models of Community Empowerment in Research on Breast Cancer and the Environment” Niem Kret, Executive Director, SABAI Panel Three - Reshaping Science for Environmental/Public Health Research Section One: The Inadequacies of the Western Scientific Method in Environmental Health Research Steve Wing, University of North Carolina, Dept. of Epidemiology, Chapel Hill, “Application of Daubert” Sheldon Krimsky, Tufts University, MA, “Reflections of the Weight of Evidence” in toxicological studies Doris Cook, lakoti’satstensserakwis Ne Ohontsia Project, Akwesasne Task Force on the Environment (ATFE), “Strengthening our Relationship with the Earth”

6

Section Two: Incorporating Indigenous Sciences into Environmental Health Research Activities Lori Lambert, Salish Kootenia College, Pablo, Montana “Inclusion of Traditional Knowledge in the Assessment of Community Impacts” Chris Walsh, Yakama Indian Health Clinic, Toppenish, Washington, “Contaminated Fish and the Concern for Tribal Health” Dianne Quigley, Syracuse University “Deepening the Ethics of Environmental Health Research Through the Use of Multiple Knowledge Systems” Panel Four - Perspectives on the Status of Funding Community-Researcher Partnership Shobha Srinavasan, National Institute of Environmental Health Sciences, Raleigh, NC; ‘Community-based Research at NIEHS” Barbara Driscoll, Policy, Planning and Standards Group, U.S. Environmental Protection Agency, NC, “Funding Community-based Partnerships for the Air Toxics Program”. Gary Grant, Concerned Citizens of Tillery, NC, “Ethics of Community –Researcher Partnerships” Cynthia Lopez, Epidemiologist, UMASS-Lowell, ”The Joys and Frustrations of Participating on Community-owned Research Projects” Panel Five - Institutional Review Boards and Institutional Protections Francine Romero, Northwest Portland Area Indian Health Board, “The Fourth Basic Ethical Principle: Respect for Communities” Peggy Shepard, Executive Director and Co-Founder of West Harlem Environmental Action (WE ACT); “Can IRBS Assure Informed Consent in Community-based or Population Research” Nancy Shore, University of WA, “IRB Review Processes for Community-based Participatory Research” Lisa Eckenwiler, Executive Director of and Senior Research Scientist at the Center for the Study of Medical Ethics and Humanities, Duke University Medical Center “The Role of Communities in the Ethical Review of Research” Panel Six - Research Ethics and Community Partnerships Section One: General Considerations in Community-Academic Partnerships Linda Silka, UMASS-Lowell Center for Family, Work and Environment Swati Prakash, WE ACT, West Harlem, NY, Section Two: Issues of Race, Class and Cultural Contexts in Community Partnership Vivian Chavez, Dept of Health Education, San Francisco State University, “The Dance of Race and Privilege in Community-based Participatory Research” Amy Schultz, Dept. of Health Behavior and Health Education, University of Michigan, “Mediating Values, Contexts and Traditions in Community-Academic Partnerships” Section Three: Community Knowledge Creation, Research Designs, Action Outcomes Phil Brown, Brown University, Sociology Dept. “Qualitative Methods in Environmental Health Research” Marta Segura, Communities for a Better Environment, Los Angeles, “Partnership Successes of the Communities for a Better Environment” A. Panel One - Research Protections and Institutional Needs in Community Research In our experience with conducting short course workshops nationally from the first grant period, the project team became aware of a number of culturally-diverse communities that are seriously affected by environmental contamination but have no local resources for training researchers on research ethics in environmental health. They are not aware of research protections that they could ensure in their relationships with researchers. These presentations are informative for community groups and researchers in ensuring ethical research on the community level. “Community Models for Building Research Protections” The Kahnawake (Mohawk Tribe) Research Council, Montreal, Canada; Treena Delormier, Carolyn Walker and Linda Deer Treena Delormier began the presentation by stating that due to an increasing number of research requests coming to the community, the community’s social service and health agency needed to develop a mechanism of community control over this. They established a community-controlled

7

research council in the year 2000 with a policy statement and guidelines for operation. The council includes one agency member and three volunteer community members. Its tasks and tools include to (1) dialogue with researchers on the council’s role and their role (2) review and discuss proposed research and give researchers applications if they don’t have a proposal prepared (3) once projects are approved, they are tracked with recordkeeping that has to be done, (4) we facilitate approved research with community support for projects that will be helpful, (5) we document research for projects that are disallowed and state how it is not beneficial to the community. In these ways the council screens research proposals. Favorable research projects are those that have direct benefits to the community. Projects should respond to a justified need in the community. Research projects must be participatory and collaborative and demonstrate that there is capacity-building for the community. Research projects are disallowed if (1) they did not have a justified need (2) they are seeking rubber stamp approval (3) they do not seek the community as a partner and (4) they don’t respect the protocol in place for research. There are no arrangements for community partnership and the research is not relevant to community needs. Treena gave an example of a health study where the community forged a collaboration with the federal government. The project was considered a success as there was cooperation all along. A lot of education about the diseases were conducted in the community. The project hired community members. Even though the research could not achieve statistical significance, there was community capacity-building that made it successful. An example of disallowed research was a project to study family violence that threatened the community with disruptive research activities. These activities would damage trust among community relationships. The research intent was primarily that Kahnawake was close to where the researchers lived so it would be easy for them to do this project. Another community member discussed how the tribal reserve is located along the St. Lawrence Seaway, near major routes for air, water and rail industrial transportation and many smaller communities. There are many potentially hazardous threats to the community from these transportation activities. The speakers highlighted the administrative responsibilities that are important to consider in overseeing research. This includes the tracking of the research investigations, ensuring there are reports filed and that accountability is maintained. Meeting minutes, on-the-job training in research and administrative functions, research review and assessment are other important and time-consuming responsibilities. (Please see slide presentation in the Conference Booklet.) ________________________________________________________ Jodi Sugerman-Brozan of Alternatives for Community and Environment (ACE) in Roxbury, MA; Building Successful Community-University Research Collaborations. ACE’s organizational goals are to build the power of low-income communities of color to eradicate environmental racism and build environmental justice. ACE provides direct legal, social, and community organizing activities and co-directs a youth leadership project. ACE is always being approached by many researchers for studying health and asthma issues. Jodi discussed projects in asthma and air pollution that ACE conducted in successful collaborations with local universities that brought many benefits to community members and were highly participatory. She described the effective work ACE conducted with the Harvard School of Public Health (NESCAUM) and the MA Dept. of Environmental Protection on implementing a community-based air monitoring program (AIRBEAT) which included youth volunteers. Roxbury had asthma rates 22 times higher than other communities. The residents of Roxbury set up air monitors in key areas of air pollution and produced data that led to a significant change for cleaner diesel fuels in buses; community education on air monitoring and air pollution; and improved quality of service in bus

8

transportation for residents. Through the use of air monitors, ACE conducted effective education and community outreach for residents about pollution that then led to improvements. ACE offers these recommendations to communities engaging in research with universities and government agencies. These include (1) ensuring that the university builds relationships with the community before conducting research and not just writing letters of support for researchers to get funding; (2) ensuring equitable relationships – there should always be equitable funding arrangements for all partners and shared decision-making over research issues; (3) real community ownership and empowerment – residents shouldn’t be objects of research but should be involved in setting research agendas, developing the research questions, conducting the research and participating in all project phases. Research funds should be used to hire people from the community. Community education and outreach should be integrated along the way. ____________________________________________________________ Susan Rose, the Human Subjects Program Manager of the US Dept. of Energy, “Community, as in Community IRB Member” spoke of her commitment in ensuring that community subjects of research be represented on Institutional Review Boards. Such definitions of community have multi-meanings and can include – subjects, participants, victims, geography, activists, recipients and advisors. At the Department of Energy, worker communities are her major concern and developing their representation in IRBs is challenging as it is not standard procedure for many IRBs to include community representation. Both IRBs and community members need to understand the need for this participation. As such, Susan Rose spoke of large conference she organized to educate many different types of communities of the need to be involved in IRBs. She disseminates newsletters to thousands of people asking for their concerns about Human Subjects Research. The response from the subject populations is low but she is working on building it up. Susan highlights four major considerations in the conduct of research that protects human subjects. These include (1) attention to women’s issues in research (2)attention to community values (3) benefits to participants must be apparent both before and after the research and (4) the research has to be transparent and collaborative. __________________________________________________________ Douglas Taylor, the Executive Director of the Southeast Community Research Center (SCRC), “Building Networks to Assist in Community Research Protections.” Doug Taylor spoke of the importance of regional centers for promoting and assisting with community-based research projects. He described the emphases and activities of SCRC in Atlanta, GA which is organized specifically to assist communities in the Black Belt of Alabama, Mississippi, Louisiana, Georgia and North and South Carolina. With high poverty and disease rates, low levels of income, education, and infrastructure, the SCRC is conducting CBPR research to improve conditions in these areas. Some of the objectives of the SCRC for this work include:

(1) to build and support democratic institutions and policies in research activities. (2) create infrastructure for social change and linking various institutions to promote this. (3) create new tools and partnerships for social change, including CBPR. (4) put knowledge creation in the hands of the left-out. (5) move resources to where they are needed and overcome inequities in research where one-

half billion dollars is spent on research in the South with little or no funding for CBPR. (6) to provide project-specific expertise, to partner with community organizations in the

Southeast to conduct needed research. Doug Taylor then described these principles of CBPR that are followed by the SCRC

(1) to conduct research that benefits the community and meets the goals of the community. (2) community participation at every stage of the research.

9

(3) power-sharing in the research activity. (4) respect for the expertise and knowledge of all research partners. (5) to learn from existing codes of ethics to develop a specific code of ethics at the initial

stage of research. (6) to include a specific action agenda – what will the community get out of this. (7) co-ownership of data and credit and recognition for all partners.

He provided brief descriptions of the SCRC’s work in projects with the Alabama Black Belt communities and their health issues, a project for tools for change with the HBCUs (Historic Black Colleges and Universities) of Atlanta, GA and a “Road Map of Health Disparities” from the view of the community being developed in Jackson, MI. He emphasized the need to think about social determinants when looking at health disparities such as poor housing, food sources and stress levels). Doug Taylor encouraged the creation of regional community research centers all over the US. Such centers need to be directed by community leaders and need to stay open and flexible in looking for unexpected openings. B. Panel Two - Promoting Community (Group) Rights in Research This panel held two sections; the first section provided an overview of the complexities in establishing community rights for research that are extensions of individual rights. The second section stressed community field experiences in seeking rights in research. Section One – Establishing Ethical Principles in Environmental/Public Health In the first section, the Syracuse University project team members of the Collaborative Initiative for Research Ethics in Environmental Health” discussed the challenges of established principles for community rights. Dianne Quigley, the Syracuse University principal investigator, “Ethical Innovations in Community Research” set out ethical principles that exist for individual rights that should be applied to communities. A list of ethical innovations developed from a compilation of community health studies in Native communities demonstrated how beneficence, justice and autonomy can be protected by (1) training community members on risks and benefits of standard health research methodologies; (2) developing partnerships with community members through research design, training, data collection, shared control, capacity-building and infrastructure support; and (3) the integration of the local knowledge of the community with the more quantitative research data. She stated that these innovations are needed to protect communities against research harms that have actually occurred. Such harms she cited were: the exclusion or dismissal of important community knowledge about local disease, contamination and potential exposure scenarios which led to technical inaccuracies in research results; the data collection biases and cultural insensitivities of researchers who subsequently ignore distinct lifestyle habits and subsistence information that affect exposure and disease estimates; the use of weak study designs that produce inconclusive results which then shut down future research by demonstrating no compelling need for further public health follow-up in an affected community; the interpretation of study results by academic researchers solely which lead to selective interpretations of data that may downplay significant data results; the researchers’ use of community resources, data and labor of community members for research activities that confer no benefits on community members and lead to exploitation of the community; and research teams that produce series of adversarial findings in communities where several studies may show health impacts but then are disproved by other teams. This also leads to a lack of public health follow-up and protection. She stated the important need to (1) educate communities of risks and benefits of research to ensure comprehension as part of informed consent and (2) to allow communities a choice in researchers and their investigations as necessary to respect for autonomy.

10

(Please see full paper in Conference Booklet.) ______________________________________________________ Ernest Wallwork, Syracuse University, project ethicist, “Ethical Analysis of Group Right for Research Ethics in Environmental Health”, argues that there are no established principles on group rights in research. As our society stresses individual rights, it narrows the broad concerns of traditional ethics to the immediate problems of isolated individuals. He discusses the emphases of utilitarian cost-benefit calculations and Kantian ethics which hold respect for the autonomous decision-maker as ethical values that dominate bioethics and research ethics. These are impoverished vehicles for ethical deliberations on group rights as they focus on persons apart from their social traditions, institutions, roles, shared goals and environments. IRBs and principal investigators then need to translate moral principles and rules designed for individuals to collectivities. In trying to establish ethical principles for groups and collectivities, a number of moral complexities face us, i.e. when does a group become worthy of separate ethical consideration? How should informed consent guidelines be modified to take into account particular group characteristics? How does the researcher deal with competing group representatives from one community? How do we protect communities from community stigmatization from research results? How do we deal with the questions of ownership of data and data results? How are individual rights protected when the community owns the data? Dr. Wallwork then reviews case studies produced in the SU Research Ethics Project and how the different authors try to interpret ethical principles for groups from individual rights. Dr. Wallwork concludes by stating that the partnership ideal usefully suggests that our research ethics for groups or communities needs to be jointly negotiated and constructed among mutually respectful participants, willing to be changed through dialogue about how to cooperate in joint undertakings. (Please see full paper in Conference Booklet.) ____________________________________________________ Ann Grodzins Gold, Syracuse University anthropologist, “Research Ethics from the Cultural Anthropologist Point of View”, had written of the need for emergent ethics in situational contexts with different power differentials and cultural and racial differences in community partnerships. In her paper, 'Research Ethics from the Cultural Anthropologist's Point of View", Dr. Gold writes that in the field of anthropology, universalizing codes of ethics can become problematic when applied to differing research contexts. She discussed several field examples from anthropology where ethical violations occurred in ways that are not anticipated so that codes can’t always prepare one for ethical conduct. Given these circumstances, other anthropologists, cited by Gold, recommend an ethics of doubt and dialogue where the ethical relation is always worked out in emergent ways. Dr. Gold reflected that, after listening to speakers at this conference, she was more convinced of the need for published ethical codes. In health research these may be important reference points for communities suffering injustices. (Please see full paper in Conference Booklet) Section Two - Field Experiences with Community Rights A second section brought forth field stories from community-based organizations engaging in collaborative research with academic and government scientists and how community rights can be protected and/or violated. Omega Wilson, the Executive Director of the Western Environmental Revitalization Organization in Mebane, North Carolina discussed the challenges of community rights in research in his community. These are the general highlights. 1. Anyone seriously interested in protecting the “research rights” for historically African-

American communities must begin with an appreciation of the need to overcome fear and

11

mistrust. Fear and mistrust prevents community members from sharing private or personal information, advocating for their own rights, contributing to shaping research questions, choosing sampling locations, and asking critical questions about the research and its applications. The African-American communities in Mebane share a history dating back to land acquired by freed slaves. This history affects many aspects of interaction and communication--community knowledge sharing, views of outsiders (regardless of ethnic background), and experiences of environmental injustice.

2. Grassroots community-based organizations need to be involved in research projects as ‘partners’ not ‘subjects’ or guinea pigs. Specific examples will be shared of the basis for mistrust in research institutions and of how community members were helped to become comfortable enough to be able to participate in an EPA Environmental Justice study.

3. The prospect of research grants may increase susceptibility of communities to research exploitation because researchers may attempt to appropriate the community story to use it for their own ends. This can impact the integrity of data collection, interpretation, and lead to research that is more designed for ‘academic’ use rather than ‘applied’ uses that directly contribute to problem resolutions in communities where data was collected. Specific examples will be shared of two grants that were turned down due to this problem and how attorneys have been engaged to develop guidelines to protect the interests and legal rights of the West End Revitalization Association and communities it represents.

Background; WERA was organized in 1994 by low-income and African American residents of 135-year old West End and White Level Communities when threatened with destruction by plans for the 27-mile four-lane 119-Bypass/Interstate from Mebane to Danville, VA. Local governments and the N.C. Dept. of Transportation/Federal Highway Administration planned the 119-bypass/interstate project for fourteen years without input from residents to service mega industrial park anchored by Ford Motor Company’s new east coast distribution plant. WERA and local residents filed administrative complaints at the U.S. Department of Justice in 1999, regarding plans for the 119-Bypass/Interstate that would destroy West End and White Level Communities. Highway engineers reported that 87% of the “displaced” homeowners would be low-income minority homeowners who were denied participation in the planning process. In violation of the federal laws, plans included displacement without relocation of at least 77 houses, two churches, and a Masonic temple. St. Luke Christian Church’s cornerstone date is 1893 and Mebane First Presbyterian cornerstone date is 1864, before the Thirteenth Amendment was ratified to end slavery. WERA’s board is composed of stakeholders from five Mebane African-American communities in Alamance and Orange Counties. WERA received its 501-©3 nonprofit status in 1995, and became the first community development corporation (CDC) in Alamance County in 1997 with start-up funds from the N.C. Rural Center and Z. Smith Reynolds Foundation. In 2001/02, WERA became Alamance County’s first Community-Based Environmental Protection (CBEP) organization with funding and training from EPA and the Environmental Support Center, Washington, D.C.

The Issue: “WERA’s Right to Research Data and GIS Mapping” 1. In 2001 EPA Region 4 awarded WERA a $15,000 Environmental Justice Small Grant to

collect data of failing on-site septic systems and contaminated drinking well water in three African-American communities in Mebane’s extraterritorial jurisdiction (unincorporated areas just outside city limits). Community residents helped to design a questionnaire and completed 120 door-to-door. Residents were also trained to collect drinking water and surface water samples.

2. WERA planned to complete the 12-month study with three partners: a) university lab for testing water samples for contamination (financed by fees and graduate school thesis project),

12

b) demographic data and GIS mapping (grants), and c) legal counsel that will use research study results to support WERA’s legal strategy (pro bono).

3. PROBLEMS: a. Jointly applied for grant ($30,000) was awarded and GIS mapping partner attempted

to force WERA to sign a university contract that made WERA a “subcontractor,” the university “principal investigator,” and WERA’s “expert witness” without consultation. GIS mapping partner threatened to withhold mapping if WERA did not sign contract.

b. GIS mapping partner submitted a second grant ($60,000) application as WERA’s agent without authorization.

c. WERA discovered that GIS mapping partner maintained a business relationship with a firm that helped plan the mega industrial park that threatened displacement of West End homes.

d. WERA used legal counsel partner to severe relationship with GIS mapping partner and void two approved grants totaling $90,000.

4. SOLUTION: Legal counsel partner is developing WERA contract to protect rights, community privacy, and data results with collaborative partners.

Case Study Questions: WERA’s Best Chance to Protect Research Rights: Collaborate and Partner with a Private University, Public University, or sign a contract with a Commercial Consultant?

a. What are the pros or positive sides of with each? (Private University, Public University, Commercial Consultant) What are the cons or negative sides of with each? Which would you choose and why?

NOTE: Please forward your Case Study responses to WERA’s email at wera1usa@netscape.net or fax to (919) 563-8857. Thank you for your reply. Omega R. Wilson _________________________________________________________ Julia Brody, the Executive Director of Silent Spring Institute (SSI),” Models of Community Empowerment in Research on Breast Cancer and the Environment,” stated that SSI was founded to study women’s health and the environment, specifically dealing with breast cancer incidence. SSI is part of the legacy of Rachel Carson who spoke of the rights of citizens to be in their own homes without poisons. Few people were aware that Rachel Carson had breast cancer. Breast cancer incidence is higher now than at any other time. The SSI seeks to forge partnerships between activists and researchers and has been investigating the high incidence of breast cancer on Cape Cod, MA. SSI was founded by the MA Breast Cancer Coalition and is based in Boston and Cape Cod. The SSI has core values in its research work: (1) research is conducted in partnership between community members and researchers (2) prevention is a major goal and (3) the Institute supports innovation and high risk research which is not funded by traditional sources. SSI scientists work in collaboration with researchers at BU, Harvard, Tufts and the US CDC. The Institute is a non-profit organization with a public interest board of directors that includes leaders from the Massachusetts Breast Cancer Coalition. This direct role for activists in governance of a research organization distinguishes SSI from other CBPR models. Silent Spring Institute’s largest study, the Cape Cod Breast Cancer and Environment Study, was funded by the MA State Legislature ($1 million/year) through the MA Dept of Public Health but this funding has since been eliminated. The SSI is now funded through private foundations and federal grants. Nurturing the research-activist partnerships of SSI requires outreach to the public on an ongoing basis. This is conducted mainly through the SSI website and news media. SSI also has a research center, advisory committee, and full-time outreach coordinator on Cape Cod. There are community poster sessions by scientists at community events. At the beginning of its research

13

efforts, SSI solicited input from many community members through focus groups. Dr. Brody stresses that there was a scoping period before research goals were set. She emphasized the need to be in dialogue with scientists on their turf through peer-reviewed scientific journal publications and conferences. Communicating with the scientific community is important, because scientists are so heavily involved in health policy decisions that offer the opportunity to translate research into action. The Cape Cod study included environmental and biological sampling in 120 homes, an aspect of the study that was strongly supported by the community. Eighty-nine chemicals were measured, with a focus on endocrine disrupting compounds, especially those that mimic estrogen. SSI also conducted an epidemiological case-control study of 2100 women with and without breast cancer. Residence was traced back to the 1940’s. The study targeted chemicals in household products (hair sprays, disinfectants, toys, detergents, etc.) and air and drinking water contaminants. The household sampling program detected 67 chemicals, including 23 pesticides; DDT, chlordane and other chemicals that have been banned are still found in homes. GIS mapping assessed historical exposures to pesticides used for golf courses, gypsy moth sprays, cranberry bogs, and other agriculture; and to drinking water contaminants. Pesticide exposures were assessed by linking residence locations with information about wind direction, forest buffers to limit aerial drift, and other parameters. Dr. Brody mentioned some potential adversarial interactions with the chemical manufacturers that were resolved by assessment of split samples sent to a second laboratory for analysis. . The ethical issues most challenging to SSI include:

(1) Who has access to public health information. For example, the MA Cancer Registry is running behind with data publicly available only until 1999. In reporting Cancer Registry statistics, there are issues regarding the levels of aggregation by town, census tracts, or regions and by time periods. The Registry is now choosing shorter time periods, 3 years, so there will be fewer cases and less statistical power.

(2) Community stigmatization and legal complications are a potential problem as measurements of groundwater or well water can set off a state or federal investigation which could lead to superfund status, and sampling results may affect real estate values.

(3) Access to information about environmental exposures can intersect with private property issues. They had difficulty getting multi-family private property owners to allow environmental testing.

(4) Reporting to individuals about exposures in their homes is a complicated situation as the health effects for some of these environmental exposures are poorly understood, and in some homes there are high levels of exposure. It is not known if they are episodic or long-term.

(5) Control and access to data are problems as the MA Dept of Health wanted Silent Spring to submit research data to them and destroy the study team’s copy. An agreement was reached to allow the study team continued access to the data.

Dr. Brody ended by thanking the women of Cape Cod for their participation in this research. _____________________________________________________________

Niem Nay Kret, the Executive Director of Southeast Asian Bilingual Advocates (SABAI), which provides services in Lowell where 17000 or more Cambodians make their home. The word representing her group is “Sabai” which also means empowerment in Khmer. She became involved in the community around issues of health and the project her group is a part of (other partners include Lowell Community Health Center, Cambodian Mutual Assistance Center, Visiting Nurses Association, and University of Massachusetts Lowell) is funded by CDC to

14

prevent heart disease and chronic diseases among Cambodian Americans. As a part of the project—Cambodian Community Health 2010--the partnership performed a study, constructed a survey, and translated the work for the community. Many of the issues discussed today speak to issues her community is struggling with. One difficult problem for them is that there is little in the way to track research. Researchers often want to come and write a story or do a study on the Cambodian community. Cambodians frequently become subjects of research because of the oppressive conditions they suffered in their homeland. In Lowell, they live in lower economic areas that have improved and are being revitalized. The Cambodian community continues, though, to experience pressures from researchers to participate in research. For Cambodians, issues of language are very important. For example, the word “organization” which has been used frequently through this conference and is used by community groups, is associated in the minds of many Cambodian Americans with communism. For people with more education that word may just mean organization, while for those with less education the term is seen as referring to a group of people who decide whether you live or you die. At Sabai, they use the word department rather than the word organization. Niem Kret continued by discussing some of the urgent needs within the Cambodian community. One is a need for information about causes of various health problems. Another is the need to build community resources (resources on community values, knowledge of services used, community insight, cultural diversity). Such resources, together with an increased ability to access these resources, can promote improvements in living conditions In conducting research activities, the Cambodian community’s first priority is the need to make ends meet. As a result, community members probably won’t ask why a research survey is being done and they probably will not see how it is relevant to them. Their focus is on daily living and needing to make ends meet. Ms. Kret described the example of a group that did a survey on the Cambodian community a few years ago but the community never received information about the results. It turns out that the survey was done largely so that that someone could get a PhD because in American society you need a letter in front of your name if your knowledge is to be valued and respected. The experience of the community is that there was a survey done but no one heard about it and it made few differences in the lives of those in the community. This is a common problem in the Cambodian community. The survey was on post-traumatic stress (PTSD) because of war in Cambodia. When the researchers come in they may have good intentions but the important question is, do they leave the community for the better? A participant in the audience asked Ms. Kret about cross-cultural misunderstandings when it comes to traditional healing practices. There was a discussion of a traditional practice of cupping and how the practice might raise concerns about child abuse. In the Cambodian community there is little belief that surgery will automatically take care of a problem. Older people do not want to have surgery for glaucoma, for example, so they use this practice of cupping that leaves burn marks on the skin. Cambodian traditional customs are those that emphasize herbal medicine. Unfortunately the practice of herbal medicine is being lost because many health care practitioners do not have the background information here. Pregnant women use herbal medicine after delivery; the particular herbs can give a false appearance on a blood test that someone is drunk. Traditional healers might use the Gecko lizard or the blessed string for healing. A monk is also sometimes brought in to bless the sick person. An audience participant asked if: you shared some of the practices for physical ailments, are there similar ones for mental illness? Ms. Kret responded that she worked in an out-patient clinic. We hardly ever talk about mental illness, but a monk would be brought in to work with a patient. There is a doctor who did a lot of work on PTSD with Cambodian community and has information on ways of addressing mental illness and

15

trauma in the Cambodian community. Rather than going to a counselor Cambodians are likely to prefer to talk to the monk. C. Panel Three - Reshaping Science for Environmental and Public Health Two sections of this panel were conducted and included presentations on Native science methods as a model for more integrated, holistic research approaches. Additionally, several presentations highlighted issues in western science that address limitations of “objectivity”: as defined by mainstream science and the courts. Section One – Native Science and Western Science Limitations Doris Cook; Researcher from the Akwesasne Task Force for the Environment, “Strengthening Our Relationship with the Earth”, highlighting the Native research approaches of the ATFE with environmental health research in their community. Ms. Cook presented this material on behalf of Mary Arquette, the Executive Director of the ATFE. The Akwesasne Nation is located along the northwest border of New York State and intersects the international border with Canada. In the 1950s, the Moses Saunders Power Dam was constructed, resulting in a major impact on the community residents. The dam, created to harness the power of the river in order to produce electricity, has since disrupted the agrarian livelihood of the people in the area who once relied heavily upon the fish for sustenance. In addition, several industrial production facilities have been constructed in the area due to the dam’s production of electricity. The Akwesasne nation is located downstream from these facilities, putting the people at great risk. The Akwesasne Task Force on the Environment recently convened the “Dreaming Our Future Conference” to assess the impact of a culturally-sensitive approach to environmental health research. This approach, based on having a good mind, body and spirit attempts to reorganize cultural traditional values and practices of the Mohawk people in way that benefits the health of the nation. One of the key elements of this approach is improving Mohawk language competency, which itself is a major part of the culture. Also identified was the need to strengthen community government and its ability to make environmental decisions. All of this is linked to the need to remediate pollution and restore the natural environment. The research questions produced by the conference were how do we use culture and tradition in environmental health research? And how do we develop strategies from within the Mohawk nation that can be portable to other communities? Another problematic component of traditional research is the use of the risk assessment model, which focuses on a single disease and utilizes a step-by-step approach to identifying the cause of a disease. For the tribe, a different perception of health is dominant; one that is culturally informed. For the Akwesasne, the concept of health is more holistic and integrated. For them, the traditional western biomedical model is meaningless. For example, an EPA scientist came into the nation to complement a measure to reduce PCB exposure through the elimination of fish consumption. For the EPA, this was seen as a victory. For the Akwesasne, this was a loss of tradition and culture, as well as a loss of the omega 3 protein they received from the fish. New research methods were identified by the conference. One new methodology would be conversing with elders, using radio shows to communicate with tribe members, and developing long term mentor relationships. These methods recognize the complexity of information obtained through the interview process. So the three ethical principles of the Akwesasne nation are having a good mind, peace and strength. These are all related to privacy, autonomy, integrity and trust and play out in their relationship with the environment. Based on these methods, a complex model of research results was presented. These results center around language and the interaction of many factors. They focus on how cultural traditions play

16

out in everyday life and how sustenance was originally maintained. The Akwesasne view of health is multi-tier. It starts with the individual, who is found with in a family. That family is part of a clan, who is a member of a larger community. The clan is part of a people who are part of a confederation. The confederation is a part of the earth. This system of integration is grounded in the relationships with those who have passed on. When we compare this model of health to the environment, there are great similarities. To summarize, the Akwesasne multi-tier definition of health incorporates a research design that incorporates cultural and traditional practices as a part of the research effort. A risk assessment study that is culturally-based may produce findings that go beyond measuring levels of PCB in fish but highlight losses of language, cultural practices, and relatedness with the earth. Research methods may stress conversing with elders, radio shows and mentoring relationships to restore health and cultural losses. (Please see full paper in Conference Booklet.) _____________________________________________________ Sheldon Krimsky, Ethicist from Tufts University, “Prosecuting Toxic Chemicals without Causality – Implications for Community Research” In the historical narratives describing the development of natural science nothing captures the drama of discovery as effectively as the “crucial experiment” (an experimentum crucis). For it is such an experiment, according to most historical accounts, that finally resolves competing explanations and/or theories, bringing to a close contested schools of thought. It was a “crucial experiment” that put to rest the theory of spontaneous generation in favor of the germ theory of disease, and that launched a critical blow to the Phlogiston theory of combustion. It was a also crucial experiment in the early part of the 20th century carried out by British physicists, among them Sir Arthur Eddington, who made use of a solar eclipse to measure the bending of the sun’s rays, an observation that supported Einstein’s over Newton’s theory of light. There is a significant and lively debate on whether crucial experiments actually exist, pitting Karl Popper against Thomas Kuhn, where the latter was a leading voice against the view that scientists falsify theories. Nevertheless, there are influential experiments that crystallize a new scientific consensus. It is very rare to find such experiments in environmental health sciences. A single well-constructed experiment almost never resolves a critical issue on the cause of a disease, particularly but not exclusively, diseases resulting from exposure to toxic substances. As long as we do not permit experiments where we would intentionally harm a human subject for the sake of scientific inquiry, no single experiment can provide the decisive data on the effects of a substance on a human group. With tens of thousands of hazardous waste and contaminated groundwater sites throughout the United States, many communities are justifiably concerned about the human health effects. The conclusions reached by health and regulatory agencies for establishing a causal connection between toxic chemicals and adverse health effects are often at odds with the perception of affected populations. Moreover, even when there are statistically significant disease clusters, there is scarcely a case where skepticism about the environmental cause of the cluster does not frame the debate and invalidates the claims of community activists. It is not unusual for important public health decisions to be based on non-causal data. Consider, for example, the recent published study of hormone replacement therapy for post-menopausal women. There were about 4,000 women in the study. A two fold increased risk of Alzheimer’s was found among women on the hormone therapy. There was no causal determination in this epidemiological research and yet it will guide medical practice.

17

Likewise, there are other approaches for evaluating chemicals effects on communities that do not depend on a “causal determination.” They include weight of evidence, unexplained rise in illnesses, gradient in illness frequency, disease clusters, and other types of circumstantial or noncausal forms of evidence. Epidemiologists have tried to bring causality around the back door by establishing criteria for extrapolating from association to cause. The Bradford-Hill Criteria is the most common among these. The Bradford-Hill criteria suggest that you can make the inference from association to causality when the data have certain characteristics. And while it may be true, if there is a causal effect, these other effects will be present, it is still a dubious inference to interpolate from properties of the data to causality.

In so far as we depend on a number of experiments, some with greater statistical power than others, and information from diverse epistemic modalities, we need to have some way of aggregating or weighing the results across different attributes of evidence. The term “weight of evidence” (WOE) is used to characterize a process or method in which all scientific evidence that is relevant to the status of a causal hypothesis is taken into account. In criminal law, juries are given the responsibility to decide the WOE in regards to guilt or innocence. For the policy sectors of government, regulatory agencies or risk assessment panels use WOE to assess the total value of the scientific evidence that a substance may be dangerous to human health. Sometimes the term is used as if there were some algorithm or rational decision process by which the “weighing of evidence” is accomplished. Other times, the term “weight of evidence” refers to nothing more than a subjective assessment on the part of a reviewer, who takes relevant data into consideration, based on a given body of published research, to ascertain whether a hypothesis is more likely to be true than false. A distinction has been made between “weight of evidence” and “strength of evidence.”2 The latter is associated with the gravitas and relevance of information related to specific indicator such as the number of tumors produced in animals. In contrast “weight of evidence” includes all varieties of evidence, positive and negative, mechanistic and non-mechanistic, in vivo and in vitro, as well as human and animal studies. In risk assessment, the trend has been to widen the lens of relevant empirical and theoretical evidence, thus moving from approaches that utilize “strength of evidence” to those that utilize “weight of evidence. “A number of benefits to a weight-of-evidence framework in regulatory decisions have been noted in the literature: 1) it provides a “clear and transparent framework” for evaluating the evidence in a risk determination; 2) it offers regulatory agencies a consistent and standardized approach to evaluating toxic substances; 3) it helps to identify the discretionary assumptions in risk determinations from experts. Four Uses of Weight of Evidence: (1)Opportunity within WOE for discretionary and subjective determinations: WOE is not a science but it does take into consideration all modalities of evidence, not just mechanistic approaches to causal knowledge. WOE must aggregate evidence across different epistemic modalities. (2)WOE and the Courts: The Daubert Decision—June 28, 1993. Judges serve as gatekeepers of reliable and relevant knowledge. Judges determine what is good science and whether experts appear before a jury. At least one of the popular reductionist interpretations of Daubert is that “each body of evidence must stand on its own.” The corpuscular view of scientific evidence. This can be distinguished from the “puzzle-making view of evidence.” (3)Community Research and WOE: Research on the impacts of toxic substances on communities should not fall prey to the reductionism of mechanistic causality—no less than research on drug efficacy and medical interventions—which draw inferences based on relative risk and weight of evidence. _____________________________________________________________

18

Steve Wing, Epidemiologist, University of North Carolina, “Application of Daubert” gave a presentation on recent research he conducted on the health impacts of the “Three Mile Island” nuclear accident in PA. Steve Wing began with a discussion of the limits of objectivity. “When we think of science, one of its legitimating factors is the concept of objectivity. Objectivity is often defined as being distanced from the research subjects. It is people’s perception of science as reliable and objective that presents a problem to doing participatory environmental health research. The only way we can be truly objective is to consider what counts as legitimate science.” He continued with a description of the Three Mile Island accident. Three Mile Island was the major nuclear accident in the United States, beginning on March 28, 1979. Over four days, one of the plant’s two reactors operated without control, emitting an unknown amount of radiation into the surrounding community. Unfortunately, the weather did not help. An inversion layer kept the warm air close to the ground, preventing dispersion of plumes of radiation. There was a great fear of contamination as well as a great lack of knowledge about what was going on. The immediate area around the plant was mostly rural – though very close to the state’s capital. Most of the people in this rural area lack the experience in challenging government regulators and scientists that other activists have drawn on. The public was told that the amount of radiation leaked during the accident was less than background levels. But right away, people in the surrounding areas were getting sick, experiencing skin rashes, hair loss, vomiting and a metallic taste among a variety of other symptoms. People were told that their symptoms were due only to stress. However, the health effects experienced by the residents were carefully described in affidavits and interviews. In 1985, after hearing about health problems at a public meeting, citizens who had been participating in re-start hearings began a health study. This study found a seven-fold excess of cancer deaths in three neighborhoods near TMI. Following the citizens’ study, Columbia University scientists conducted a cancer incidence study in the ten-mile area. In support of a law suit brought by approximately 2,000 plaintiffs, University of North Carolina was asked to perform a reevaluation of the data collected by Columbia researchers. Recognizing the community studies, symptom reports, and the importance of respiratory tract exposures from radioactive gasses, UNC epidemiologists analyzed the cancer incidence data to look for impacts on lung cancer. This reanalysis demonstrated dose response relationships between estimated accident doses and post-accident incidence of lung cancer as well as leukemia and all cancer. A map of the area shows the relationship between estimated plumes of radiation and risk of lung cancer. This is where the Daubert decision came into play. The Daubert criteria were applied by the judge in a way that excluded the lung cancer analyses from being presented to the jury. The judge accepted arguments of the defense that lung cancer in the 1981-85 time period could not have been caused by accident emissions. This decision to leave out the lung cancer findings was later overturned by an appellate court, however the plaintiff’s lawyers dropped the case. This outcome is an example of scientific work based on community knowledge being ignored by a judge and kept from a jury. Although the scientific method is generally seen as being objective by excluding community observations, objectivity is actually compromised when researchers make decisions about hypotheses, analytic methods, and interpretation of data based solely on the observations of industries and government agencies that have interests in minimizing evidence of problems. Even though industry has a long history of cover-ups and withholding information from the public, industry-backed science is not seen with the same contempt. We have to be skeptical of information from authorities and recognize that there is a long history of close ties between scientists and the wealthy and powerful. (Please see full paper in Conference Booklet.)

19

Section Two – Incorporating Indigenous Science into Environmental Health Activities Lori Lambert, Salish Kootenia College, Pablo, Montana “Inclusion Of Traditional Knowledge In The Assessment Of Community Impacts” This presentation is meant to honor Salmon, First Fish, First People, and traditional knowledge. Historically, the perspective of Native people as scientists and Traditional Knowledge Keepers is not included in studies of environmental health. In assessing the social, cultural, and public health impacts associated with the consumption of contaminated fish, we employ a medicine wheel model with four interrelated components: ecology, epidemiology, cultural study, and clinical medicine. In this situation, comprehensive ecological data are available, characterizing water quality and the amounts of chemical contaminants in fish. Dietary surveys have defined the central importance of fish in the diet, with some Tribal persons eating as much as 300 pounds per year. Epidemiological analysis forecasts high risks for cancer and organ damage for the exposed Native populations. Cultural data include observations of changes in fish runs and health of the salmon over time, and the threat to traditional ways of living and spirituality. Illness and disease among Tribal members is attributed to the poor health of the salmon, and we are investigating concerns about excess cancers. 

We argue that risk communication in Native communities, to be successful, must be formulated within the context of Native Science (Gregory Cajate, 1999), and should allow for the free interaction of these components rather than discrete analyses. Similarly, a research model for studies of fish contamination from the Yakama Indian Nation is titled the “medical ecological model” (or medicine wheel) includes four interrelated components: ecology, epidemiology, cultural study and clinical medicine, producing a rich data source in the understanding and data collection from the interaction of these components together. _______________________________________________________________ Chris Walsh, Yakima Indian Health Service Clinic, “Contaminated Fish and the Concern for Tribal Health”. In 1988 U.S. EPA studied contaminant levels in major rivers across the United States. This study showed high dioxin levels in the Columbia River. Because of this study and anecdotal reports by Tribal members, the Columbia River Intertribal Fishing Commission designed and implemented a 1994 Fish Consumption Survey. 513 adults from 4 tribes were interviewed about fish consumption patterns. The interviews were carried out by trained tribal interviewers. Ms. Walsh presented the significant findings of this study on slides which are included in the conference proceedings packet. To summarize here, she reported that salmon is the most consumed fish at 62% consumption, followed by trout at 18% and then lesser consumed fish types, whitefish, smelt, lamprey, sturgeon, walleye, suckers. The consumption of fish by tribal members is much higher than the EPA estimates for the general public which are 7.5 grams a day. Tribal members are at the 99th percentile of 389 grams/day (48 meals per month). Some tribal members reported consumption rates as high as 1000 grams a day. The Yakama tribal fisheries program was successful in bringing together the four River tribes to catch subsistence fish at fishing sites that were considered sanctuaries in treaty rights. Analyses of the fish were conducted in labs in Canada and US- data was then given to the tribe for their own analysis. Pollution of The Columbia River begins in British Columbia, Canada, and travels into Washington State. The pollution includes heavy metals, dioxins, PCB’s, arochlors, pesticides from agricultural run-off and domestic pollution from cities and towns along the River. Chris reports that there is no remediation of the pollution at this time, but aggressive collaboration is needed by both Canada and the U.S. to save the river and the fish. The chemicals are linked to cancers, diabetes, neurological, learning and behavior disorders and other health problems. Women of child-bearing years, pregnant women, and infants are most at risk. Lifetime cancer risks are high in the tribe. The slides indicate that the cancer risks are at least 7-10 times higher for tribal members than for the general public. Also at risk in the tribe are

20

the elders who may consume up to 100 times more fish than the general public. Ms. Walsh stated that the Fish Consumption Survey was taken when salmon runs were low and a new consumption survey is needed to reflect current consumption amounts. The tribe now has an NIEHS Environmental Justice grant to develop educational tools for health, cultural and historical issues associated with the pollution problems. At this time, the project has developed two videos designed to educate the tribal and general community about the contaminant issue, educational materials for the Tribal schools and training for health care providers in local community as well as at the Yakama Indian Health Service clinic. As part of the grant goals, Ms. Walsh stated there are internal and external health advisory boards established, and two Yakama Tribal community members on the Portland Area Indian Health Institutional Review Board. With concern about cancer rates, another grant from NCI has been received which will be used to characterize cancer incidence and type from IHS medical records, and to perform linkage with state cancer registries of WA, OR and ID. Ms. Walsh ended her presentation saying that spiritually and culturally, the tribe and the salmon are one and the problem of keeping them healthy is first and foremost on their minds (Please see slide presentation in Conference Booklet.) _____________________________________________________ Dianne Quigley, Syracuse University, “The Use of Multiple Knowledge Systems for Deepening the Ethics of Environmental Health Research”. She presented excerpts from a paper that highlighted the importance of Native Science as complementary to the western scientific method and enriching to the ethical relation among community members, scientists and natural forces. Gregory Cajete (1999) states that “Native Science” is a metaphor for a wide range of tribal processes of perceiving, thinking, acting and ‘coming to know’ that have evolved through the human experience with the natural world. One must participate with the natural world; be open to the roles of sensation, perception, imagination, emotion, symbols, and spirit as well as logic, concept and rational empiricism. In its most natural form, it is a map of natural reality, drawn from the experience of thousands of generations; giving rise to modern mechanistic science and so Native science can be said to be inclusive of “western science”(:4-5). Cajete stresses that the primacy of a lived and creative relationship with the natural world cannot be underestimated in Native science. Maintaining relationships through continual participation with the natural creative process of nature and understanding, maintaining and restoring harmonious relationships are foundations of Native science. Native science believes that knowledge is gained through direct participation more than abstraction. It goes beyond objective measurement, honoring the primacy of direct experience, interrelatedness, relationship, holism, quality and value. Objectivity is based on subjective experience. Native science incorporates spiritual process; no division exists between science and spirituality; every act, element, plant, animal and natural process is considered to have a moving spirit with which humans continually communicate. As such, all natural phenomena must be interpreted through its context within the human and natural forces it is embedded within. This major difference with the western scientific perspective leads to Cajete’s stress on these subsequent processes of Native science. In gaining a total understanding of the “context’ and “the relations” affecting natural phenomena. The Native scientist needs preparation of body, mind and spirit. This is the primary process for “coming to know”. The mind and body can be used for careful, disciplined, and repeatable experimentation and observation. The knowledge gained through body, mind, and heart come through altered states of being in songs, dance, meditation, reflection, dreams and visions. Native science requires us to gain inner sensibilities – to experience the essences of nature. An understanding of and experience with metaphoric stories, symbols and images is necessary in order to explain events in nature (:69). Snively and Corsiglia

21

(2000) state that abstract principles are encapsulated in metaphor through descriptive stories and names where sensory information is transmitted orally (:10). Quigley stated that in her paper are case examples of Native Science as it is practiced in traditional ecological knowledge. It’s most important quality being that of capturing local conditions, the flux of nature. Indigenous science has a rich source of methods for understanding the local; for understanding the web of relations within the interactions between humans and local ecosystems. At this time, these academic and community partnerships are working toward more respect for the local with CBPR arrangements. Research investigations however can still be focused on research analyses that are abstractive, that seek to quantify diseases and exposures. The methods alone will downplay the subjective contexts of the residents and completely neglect social and spiritual meanings of contamination. The findings of these abstractive analyses still offer limited benefits to community members for dealing with health and environmental degradation from polluting facilities. Indigenous science methods are extremely valuable to the field of environmental health in building the narrative of the local context and working toward alternative ways of restoring the relationships between the natural environments and their inhabitants. Many American communities may hold local observations and local knowledge about their natural environments which are a valid source of information. Native science teaches us how much more deeply Americans should be engaged in that local knowledge production and become knowledge producers. (Please see full paper in “Conference Booklet”) ______________________________________________________________ D. Panel Four - The Status of Funding for Community-based Participatory Research (CBPR) This panel brought together several federal funders and community-based and academic presenters to discuss funding resources and challenges in CBPR. Shobha Srinivasan, PhD, “Community Based Research at the National Institute of Environmental Health Sciences (NIEHS)” Susceptibility and Population Health, Department of Health and Human Services, National Institutes of Health Our general understanding of environmental exposures include: “Physical Agents “ such as radiation, “Chemical Agents” such as pesticides and “Biological Agents” as pathogens NIEHS defines “Environmental Health” as: “In its broadest sense, environmental health comprises those aspects of human health, disease, and injury that are determined or influenced by factors in the environment. This includes not only the study of the direct pathological effects of various chemical, physical, and biological agents, but also the effects on health of the broad physical and social environment, which includes housing, urban development, land-use and transportation, industry, and agriculture.” In the past ten years, NIEHS has incorporated the social environment in environmental health research. The “Social Environment” is defined with “Individual and community-level characteristics”, “Neighborhood Factors”, ”Socioeconomic Status (SES)”, “Coping Resources”, “Support Networks”, “Cultural Variables”, “Racism/Classism”, “Gender”. Dr. Srinivasan emphasized “Translational Research” at NIEHS which is the conversion of findings from basic, clinical or epidemiological environmental health science research into information, resources, or tools that can be applied by health care providers and community residents to improve public health outcomes in at-risk neighborhoods. Simply put, she said it is placing the outcomes of the research into the hands of the people and communities that will use the research and benefit from the research.

22

In fulfilling the NIEHS Mission, we have these program areas: (1) Research, (2) Prevention & Intervention, (3) Communication, (4)Training, (5)Education, (6)Technology Transfer, and (7)Community Outreach. The Translational Research Agenda has three objectives (1)To improve the understanding of how physical and social environmental factors affect human health. (2)To develop better means of preventing environmentally related health problems. (3)To promote partnerships among scientists, health care providers, and community members. NIEHS Programs in Translational Research are:

Environmental Justice (since 1993, (CBE and Tillery projects are examples)) Ethics in Environmental Health Research Community-Based Participatory Research Health Disparities Advanced Research Cooperation in Environmental Health K-12 Education Community Outreach & Education Program Superfund Outreach Centers for Population Health & Health Disparities

The success of these programs reflects community involvement and the empowerment of communities, especially when the communities themselves have been funded. Increased community awareness and capacity-building are other markers of the success of these programs. The education of universities about these issues of translational research has been important. When I was a student there was no one for me to talk to about the importance of this work and I often had to defend the approach, had to prove to others that you could really do research that is community-based and community-driven. A variety of speakers this morning spoke about health improvements that can result from such programs. Comprehension of community priorities, greater public health impact, and policy impacts are other indicators of the successes we have seen (: i.e. institutional impacts such as educating NIH; to show them they are getting ‘the bang for the buck’). Communities have been able to use this research to take to city-boards and to improve local health policies. At the city-state level this research is having an impact. But, many challenges for this research remain. They include: (1) Capacity building- whose and for whom? Are we all really funding groups? When I making a funding decision I am thinking that groups are doing great work. (2) Partnerships Do I fund an organization I don’t know about or I do? Are the large groups helping the smaller ones so that we see a spreading of impact? (3) Visions and goals- There continue to be many imbalances in vision and goals; for example, there continues to be an imbalance between what NIH expects and what communities prioritize. (4) Budget- We continue pore over it at NIH and look at the balance between university and community and we cut the indirects because we see an imbalance in the funding to universities and to communities. We are now cutting indirect costs to 8%. (5) Evaluation: The community often looks at evaluation and thinks that evaluation is a terrible thing. But evaluation can be very helpful to programs and their future. These programs are already making impacts, but they aren’t always claiming or documenting these important impacts. Organizations do all kinds of things, educate communities, host health fairs, and so forth. Yet when we at NIEHS ask them if they have made an impact, they sometimes say no even though they are having an impact. I would encourage you to show what you are doing. Document what you are achieving. Use both qualitative and quantitative approaches.

23

(6)Promotion of community groups- At NIEHS, we continue to ask ourselves who we are promoting to do this work. Are we reaching only the largest groups? Are there smaller groups undertaking creative approaches that should be encouraged and promoted? What is the best way to do this? (7)Education and outreach- When a community leader tells me that the university with which they work can’t apply for the proposal, I ask them to consider applying as a community-based organization. In the grant “Request for Proposals,” CBOs are encouraged to apply. I can come help give you technical support, help you figure out what should be put in a grant, what the structure is, and so forth (8)Sustained support: We have 25 EJ grantees. It is important that NIEHS be acknowledged in publications for sustained support. Often when we are audited we find out that NIEHS has not been acknowledged in these publications. Future Directions/Next Steps: Dr. Srinivasan noted that future directions for funding include: (1)Built/Urban Environment and Health grant programs (2)Re-announcements of grant programs: Environmental Justice, Centers for Children’s Environmental Health, Advanced Research Cooperation in Environmental Health. For contact information, she encourages conference participants to please visit the website at: http://www.niehs.nih.gov/translat/home.htm

_____________________________________________________________ Barbara Driscoll, USEPA, Research Triangle Park, NC,” Funding Community-Based Partnerships for the Air Toxics Program” Barbara Driscoll works in the Environmental Protection Agency (EPA) air program. “We look at stationary sources. We are required to look into and develop a strategy for urban areas. Part of the strategy is that there are different sources that impact local communities like gas stations, dry cleaners, etc. We want to start working with communities on their air toxics problems. We have 10 regional offices. We have been working with self-identified communities. We have been funding smaller problems with seed money, 2.2 million, to get work going at community level. We have funded about 30 groups. One was in Cleveland, OH. We go assess the problem and then designed a project there to do risk-reduction. We interviewed different groups and put together a group to represent Cleveland and what they would like to do. We developed activities they would like to do- tools for schools, second hand smoke, commuter choice, trucker fleets, small stationary sources, and truck refittings. The community selected what they wanted to fund. We are working on building sustainability within communities because people get burned out. Based on that project, the national headquarters is working on a national program to get reductions and not just assessment. People in the community know where the problem is coming from but you can’t necessarily get that facility to do anything without the data showing they have a problem. At EPA, we know already that the problem is pollution reduction and not more assessment. We have been doing grants through the regional offices and next year a RFA for different projects. Some communities are well organized who go out and get the grants. They may not be the ones with the greatest need, so how do we put language into solicitation to get to those communities?” (Audience; Which cities have been selected for air toxics monitoring: Merrimack Valley, MA., Baltimore, Detroit, Chicago, Indianapolis, Mobile, AL, Chattanooga, TN, Ohio/Kentucky Area, Texas, Oklahoma, Oakland,Ca, Phoenix, AZ.) ___________________________________________________

24

Gary Grant: Concerned Citizens of Tillery (CCT) “Ethics of Community – Researcher Partnerships” The CCT did not organize themselves as an environmental group, but an issue group. We look at issues holistically. We came to the EJ network because of hog poop. So I am known as the man who knows about hog poop. I understand that there is a push for CBOs to take the lead, but my org was not ready to take the responsibility and therefore fortunate to work with a researcher who would help us. Gary voiced concern about the change in NIH indirect and asked “Do you think 8% is enough?” We have to talk about the state of affairs. Most researchers serve the institutions that pollute, what we call sacrifice zones, while we are out trying to organize against it. This was in Las Vegas and it was made clear that we could not use our grants to take our issues to our legislators. We work for mostly people over 65. We do printing but do not use EPA funding to rent buses. And we put NIEHS on all our stuff. Communities are usually involved with justice issues because if we take care of people they will take care of the environment. I come from farming where we did not have pollution until everything became industrialized. Now you can dump all this hog poop into a pool and call it a lagoon but I have to install a septic system for a 4 person family. Don Webb describes a lagoon as something in the islands you see beautiful swimming in. Not only is hog poop in lagoons, but also aerated and then it falls on people’s houses. We have people taking us into court to help us deal with it. We have scientists at NC State supporting state, then have the Health school at UNC who is willing to take a chance to document what is happening with communities. This is an imbalance. We have a university studying the outcomes of the poop that they allowed to be produced, and saying that it will take another 5 years. When communities are in control of their own destiny, they can bring about change in their own lives, in policy. It is the community that will elect the official that allows the hog poop in lagoons unless the community knows how to prevent that. The community research initiative given to us by NIEHS has given us much control that we are happy about. We are trying to come up with a set of ethical principles. I often wonder how often we need to assemble like this because these monies could be used to organize and mobilize. As a result of this kind of thing we have an EJ class in UNC; have a speaker’s bureau that helps people understand they are authorities without all the degrees. We have established a committee that overlooks IRBs before they are submitted to the community. I think the question is, are we working with a researcher or institute? How can we create more linkages with institutions rather than just people like you? ____________________________________________________________ Cynthia Lopez, Epidemiologist, U Mass, Lowell, “The Joys and Frustrations of Participating on Community-Owned Research Projects” I come from a relatively marginalized community in east Los Angeles, and my first brush with environmental injustice was when someone walked up to our front door and said to me, a child, that the well water was contaminated and we shouldn’t drink it. This person did not ask to speak to an adult, they did not provide us with any documentation or any answers. We felt helpless. This experience inspired me to do research that was relevant to marginalized communities. I was interested in the effects of pesticides and farmworkers, and that was my first research project. I’m not sure if I should be here to discuss funding, as I have never received millions of research dollars for major projects, and in some way that has been by choice. I have tried to spend a lot of my time working with community groups trying to answer questions they were interested in. Even community-based partnerships funded through Universities are not quite right to answer such questions, and may not fit into university priorities. Working with communities may not be conducive to getting published; and some communities, such as tribes, do not want their information published. There are a lot of incentives, in the University setting, to get major research funding and to get published. The University may not see working with communities on

25

projects that may be under-funded, or have no funding, as research. Often working with communities is seen as a service project, not research. When I think about funding, I often think about doing research with communities and I do not look solely for big grants. There are a lot of small funding sources that are not given credence (at the University level). There are many epidemiological studies or health investigations, where the researchers did not even talk to, or survey, affected communities. In my experience, community members have knowledge and enthusiasm. I have worked with a lot of people interested in doing their own research. However, in my experience, often their research is considered biased, whereas companies can do research (for example, when interested in siting a facility in a community), they can even do poor research, and their results are given more credence. (Audience: only companies can do their own research.) Right, I am appalled by how bad the studies are that are done by companies, and yet how high the standards are when applied to community groups (for example when being reviewed by EPA or ATSDR); there’s a double standard. A friend of mine who helped design Woburn study (the basis for the film, “A Civil Action,) was attacked and threatened, and he’s one of the top biostatisticians in the world. The joy of community based research projects is that you get to work with great people, dedicated people. Some of the frustrations are that you may not get the support from your peers in academia. About 40% of the groups I work with, primarily Native American groups, do not want state or federal funding because they may be involved in litigation and government funded data may be easily subpoenaed. This happened with one group that I worked with. When you think of historical oppression that tribes have experienced, confidentiality is very relevant for them. In thinking about community-owned research, we have gone from top-down research (controlled by the University), to partnerships, to research that is truly owned and controlled by the community. What does this really mean? From a researcher perspective it means possibly not publishing results because the researcher is not the decision-maker in terms of what information gets out to the public. An interesting component for community-owned research is the IRB process. When a community is studying itself, then that turns the purpose of the IRB on its head. How do you protect a community, or study participants, from themselves? For example, when residents are deciding to have their own blood samples taken, how do you go about informed consent? (Audience: in terms of the community capacity-building, when CBE started we were the only EJ organization in our area. But when the knowledge started to build, there are now six organizations, where there were none before. They are small. What we did was to find a partner for those organizations. When we sue a company we can have funds go to organizations, so they have grown with our partnership and with the local communities. If we had capacity-building we could have more control over our own funding. Local CBOs that are anchors do have a responsibility to help other organizations.) It would be great for researchers and community people to foster institutional change in the university, and create a revolution. Then, the responsibility to change would not just be on the community. That would be great. E. Panel Five - Institutional Review Boards (IRBs) and Institutional Research Protections This panel included four presentations on IRBs from tribal, community and academic representatives, dealing with the operations of IRBs, and the challenges of participation and representation of community members and community protections for IRBs.

26

Francine Romero: Northwest Indian Health Service, Portland, OR,” The Fourth Basic Ethical Principle: Respect for Communities” Ms. Romero stated that the Indian Health Service took on more protection of communities involved in research activities ten years ago. IHS is the principal health care provider for American Indian tribes since 1921. As part of her introduction, she described IRBs and their roles. An IRB is required for every federally-funded or regulated institution that is conducting research with human subjects. IRBs are organized for clinical or behavioral research; certain IRBs can have more sophisticated designs than others. IRBs shouldn’t always apply universal principles for research oversight as in Native communities; there are over 555 sovereign tribes and 1.5 million Native Americans. Each tribe has their own language, geography, and socio-demographic conditions and should be approached differently. In terms of IRB oversight of research, research is defined as systematic investigations designed to develop or contribute to generalizeable knowledge. IRBs came into being as result of research abuses in the 20th century that include Nazi research atrocities, the infection of mentally-retarded children with hepatitis virus in exchange for school tuition, and the well-known recent Tuskegee study of untreated syphilis in African-American men. Research ethics principles began with the Nuremberg trials that resulted in these principles (1) voluntary consent by individuals as research subjects without coercion, (2) the pursuit of good science by good scientists, (3) potential benefits of research should justify the experiments and the harm should be minimized. (4) the degree of risk should always be less than the potential benefits, (5) subjects should have the right to end participation at any time. In 1974, the federal government passed the National Research Act which would require IRBs and ensure the implementation of ethical principles in research. The Belmont Report published ethical principles that center of three major ethical standards (1) beneficence (2) justice and (3) respect for persons. The IHS implements a 4th principle which is “respect for communities”. IHS looks at the “Community Involvement and Participation” in research protocols. These considerations include: (1) separate tribal approval for every tribe participating in research; including the review of research publications. (2) cultural appropriateness of study design; including implementation procedures, respect for community specific norms, knowledge and values and how these are incorporated. (3) a review of research outcomes with particular emphasis on community capacity-building and collaborative work with tribes on research activities. IHS very much supports research but needs to balance ethical concerns with promoting research. All existing IHS IRBs have 50-75% Native participation on the Boards and with that diversity, traditional concerns are always at the table. We look for community partnership from inception of the ideas to project completion and into publication; co-author models are how it should be. IHS IRB queries that reflect the “respect for communities” are: - Are there tribal consultants? - Is there community capacity-building with benefits to the tribe? - Does the researcher understand and appreciate community research priorities? - Are there regular and timely consultations scheduled? - Are there tribal people who will be trained on research components so that if the tribe wants

to do research projects in the future, they have the capacity to do so because researchers took the time to educate and train tribal people?

IHS IRB recommendations to researchers also stress that researchers (1) make sure that tribes understand the collaborator responsibilities and requirements so there are no misunderstandings or disguised intentions by researchers; (2) make available listing of all public health resources to tribes; (3)provide technical assistance to the tribes so that they can understand what the whole

27

research project is about. Ms. Romero provided this website for further follow-up. She is the co-chair of the IHS Board and Phil Smith is the chair: www.upaihb.org. ________________________________________________________ Peggy Shepard, Executive Director, WE ACT, New York “Can IRBs Assure Informed Consent in Community-Based or Population Research” Peggy Shepherd’s presentation focused on challenges that face IRBs in the complex needs of CBPR and informed consent. She questions the ethical representation of IRBs that are situated in research institutions. These institutions will lose money without the approval of research activities so can they be truly representing the needs of human subjects in their ethical decision-making? We know that review boards should consist of people with the expertise for the research being reviewed, who are independent and have balanced representation of multiple interests. Most IRBs in fact are populated by people who work at these research institutions. She cites the example of a local university whose lay person representative is actually someone from the affected community of research but also works at the university. Is that really lay involvement? Whose rights are being protected? Can we be sure that we are truly having the representation of well-trained, sensitized investigators, are they really sensitized to research ethics? WE ACT has worked with Columbia University for the past ten years and WE ACT staff have been principal investigators on the research studies. During this time, WE ACT has been concerned with the informed consent of research subjects. Do participants understand the benefits and burdens of this research? Are the facts of the research given to them in a way that they can understand? WE ACT works on assisting research subjects/communities in understanding informed consent. WE ACT is conducting a running study on the impacts of diesel exposure to teenage children at Harlem schools. They reached out to parents, the students, the teachers and the principal of the school with a two hour community dinner. We explained the study’s context, why it is being conducted, what its objectives are and how we would deal with the information and what its impacts would be. The school asked what the benefit and burdens were to them. If urine samples are taken at school, teachers feared abuse allegations. Would you provide environmental education to the school for its participation? After offering these provisions: the transport of the children to a lab at Columbia university for urine samples, ½ day educational component at the lab for the students, and one day a month of environmental health education, one school principal still wouldn’t consent to the study. Another school provided consent and the project had an excellent experience. Research information and informed consent are very important to community residents and should be a part of what happens at IRBs. CBPR will enroll populations that include ethnic, racial, and Native groups, and represent a broad geography and community-based interests, the question increasingly becomes “ who must consent”; especially with human genome and genetic studies. The traditional views of informed consent may not be appropriate for CBPR with implications beyond the individual where findings could stigmatize the whole communities of people. Assumptions that underlie informed consent include: (1) comprehension of risks and benefits: are we speaking in a culturally-sensitive way to specific populations in a vocabulary that everyone understands. How do we inform people about protocols? (2) assumes a power and confidence in residents and frank and open communication from researchers about their expectations. Often, researchers are on a fishing expedition where it is hard to present risks and benefits.

28

(3) factors that influence informed consent (gender, age, ethnicity, socio-economic status, race, class) create power dynamics between communities for stipends and other benefits and puts pressure to participate on them. Also, there is community distrust of research institutions that are gentrifiers in their neighborhoods and evict community residents on a daily basis. Suddenly they are being asked by the same institution to participate in a study with them. The nature of communication, the language and complexity of communication provides barriers to informed consent. In one neighborhood, there are Latinos, African-Americans who consist of Dominicans, Carribean, Puerto Ricans and Africans; none of the information is translated into their languages. (4) Can IRBs assure expertise in CBPR or could we develop community advisory boards in our own communities where the research takes place? The benefits of community review boards would be: (1) to provide peer members who can explain and discuss true benefits and risks? (2) to reinforce the commitment to community participation in all aspects of the research. (3) to assure that study participants are aware of all implications of their involvement in the study. (4) to improve communication of study terminology as well as the risks and benefits. WE ACT has a new ethics grant from NIEHS and wants to develop new models of IRBs. Recently she was asked by a university researcher how could the university get more community people on their IRBs. First of all, there are thousands of studies of year, IRBs meet 3-4 times/month in all day sessions and the members are not compensated as they already have university positions. How can community residents do this without compensation and training on scientific vocabulary, protocols and procedures? Without training and compensation, they cannot be responsive. Having independent IRBs not connected to universities would be preferred and ensuring that participation is compensated for conducting reviews is more equitable. The 13th principle of environmental justice is the principle of informed consent and a halt to experimental medical procedures on people of color. We must begin to have community-based organizations that can assure these principles. If academics have caused harm, we need to devise better principles as to how research can be reviewed. _________________________________________________________ Nancy Shore, Doctoral Student, Univ. of WA, “IRB Review Processes for Community-based Participatory Research” Nancy Shore’s presentation focused on the work of her dissertation. She is conducting interviews with CBPR researchers and conventional social science researchers about their perceptions and experiences with the human subjects review process and regulations. The key questions of the interviews include: (1) What do researchers perceive as the core ethical issues in their work? (2) How do researchers interpret the three ethical principles specified in the Belmont Report? (3) How do researchers conceptualize what constitutes research and how does this coincide with the Human Subjects regulations definition? (4) How are community partners involved in the IRB review process? (5) What are the challenges, benefits, and recommendations of the current system? In highlighting some of her preliminary findings regarding question #5, Ms. Shore presented the following. Benefits: Most of the researchers interviewed identified benefits to the IRB process. For example, the application process encourages them to identify the steps to reduce harms and to think critically about the applicable ethical issues.

29

Challenges: There were a number of important challenges discussed by the researchers interviewed: (1) The amount of time it takes to complete the actual human subjects application. (2) The infrequency of IRB meetings and the time it takes to get on the agenda and ultimately to receive approval. (3) The inadequate resources available to IRBs, which tend to be overworked and understaffed. (4) The potential for methodological disconnects between CBPR researchers and the IRB review process. (5) The challenges associated with having to submit to multiple IRBs—oftentimes the feedback is inconsistent across the involved IRBs. Recommendations: These are some of the recommendations: (1) There is a need to educate researchers regarding the purpose of the IRB and for IRB members to learn about participatory research processes. (2) IRBs need to have representatives who have CBPR experience, which can include community representatives as well as other CBPR partners. (3) There is a need for increased relationship-building efforts between IRB members and CBPR researchers. (4) More involvement and education of community partners needs to occur. For example, opportunities for community partners to learn about the history of the IRB, the regulations, and the IRB benefits as well as the challenges. With this information, community partners can determine their degree of involvement in the IRB process. (5) There is a need to acknowledge that community partners often act as informal IRBs and often have higher ethical standards than the IRBs themselves. _____________________________________________________________ . Lisa Eckenwiler, Duke University Medical Center, “The Role of Communities in the Ethical Review of Research” Institutional Review Boards (IRBs) represent a particular approach to answering to the public generally and research participants more directly --in terms of responsibilities that have come to be recognized within the research community. Their efforts, indeed, can be understood as a special case of an important move made in moral life: reasoning about the interests of others in coming to conclusions about what is ethically acceptable. A host of assumptions about how this process of reasoning about others' interests occurs; how the people involved in and affected by it are situated; and how research participants can expect to benefit from the process. These find form in existing IRBs as well as in some recent proposals aimed at reforming them. IRBs current regulations require at least one non scientist and one member who is unaffiliated with the institution to be appointed (promulgated in 1981). Contemporary calls for "community /public/lay" "participation; consultation; consent have come from (1) Institution of Medicine (IOM) report – in the responsible conduct of research, there is a need for greater involvement of research participants in the review and oversight of research. There is a need for greater transparency and- open communication and interaction with local community and stakeholders. (2) A Center for Disease (CDC) task force developed “Principles of Community Engagement” to ensure the involvement of research subjects in the research process. (3) The National Bioethics Advisory Commission (NBAC) produced findings from its “Ethical and Legal Issues of Community” that members are needed to represent perspectives of participants.

30

(4) Dept of Health and Human Services (DHHS): emergency research rule; calls for public disclosure and community consultation for when you need to discuss research to the community and what community consultation is supposed to be. These examples show various names for lay involvement; lay people, representative of the community, research participant ,community consultant. We need clarity and guidance for IRBs and how to heed this call for lay involvement. Under existing conditions, that is, using the framework we have inherited; this is for academic review. What would a reformed system look like; we need to revise and restructure the whole IRB process as the current system is incredibly limited in what IRBs can do. A. Challenges to sound ethical review 1. IRB structure *institutional basis – they are based in institutions and not in communities. They assume equally situated members and imbalances in power are not looked at. They focus on rights of individuals and not of groups. *They are constituted by scientific membership and narrow field of expertise; with limiting definitions of what constitutes knowledge. *They can have an illusion of neutrality/privilege objectivity as a value. They are guided by the principle of objectivity and impartiality as the best way to go about ethical review; unswayed by attachments, prejudices, biases and affiliations. After abusive research practices in US, there was a deliberate decision to make a structural choice for scientific autonomy, to avoid politics trampling upon the rights of the individual in the research process. Now we see that objectivity is an illusion, is not attainable and hides power. It relies upon imaginative leaps by experts for people not at the table. *financial and other conflicts of interest for individuals and institutions can manifest themselves here: more likely with academic-industry partnerships, economic structure of research. Issues of career advancement are conflicts with individuals. * One size fits all with day time meetings and no compensation for members. 2. IRB process There is ambiguity in the existing regulations regarding: a. The proper role of lay members. There are many interpretations of what lay people should do. These include that unaffiliated persons should have the capacity to review research as the research subject. They should try to represent the needs and concerns of the beneficiaries of the research. They should have the idealized conscience of the surrounding community and have representative thinking, meaning that they should engage sympathetically and honestly in the thinking of people from other walks of life (is this really possible?). b. There is a majority-rule vs. consensus process which can lead to exclusion of perspectives, concerns. c. Public policy is a blunt instrument. Need specificity in ethical guidelines re: *What kind of research: environmental, ph, clinical: genetics? drugs/devices? These have different needs, raise different issues. This calls for a different body of knowledge/experience necessary to evaluate it adequately. On one hand you may have a community; politically-organized and locally-bounded group of people – or an identifiable social group named as beneficiaries of the research. Depending upon which of these you are talking about, you may need to develop different kinds of collaborative processes that call for different kinds of lay involvement. To wrap up, we might want to clarify what we mean as a study population, not just use the language of community loosely and we should also think about what different models of ethical review could look like.

31

B. Ideas for reform *how to incorporate standpoints: Since it is group membership - whether organized around age, health status, gender, race and ethnicity, religion, class, or history of oppression - that fundamentally shapes persons' identities and that may be part of what invites harm to them, group membership should become an important organizing principle for incorporating particularity into research review. Beyond that, we should have clarity in terms of different kinds of groups we want to look at: (1) disease groups (2) neighborhoods (3) genetically-identifiable populations (4) socially-identified groups. Few of these are very well defined groups with clear boundaries or well-developed political organizations that present a challenge. We must acknowledge pluralism within communities, as well as the fact that people tend to have multiple community or group affiliations. Also, seek out multiple groups, especially those who are less audible because they have few resources and little access to the "channels of communication" where decisions about research are made, or because they may be organized around norms other than those that inform dominant social structures. (Ms Eckinwiler talked later about academic speech styles that require conciseness, the need to make rational arguments and be dispassionate. This can clash with speech styles that are circuitous, that relate personal stories, anecdotes or the use of body language or emotional arguments. This will be seen as not credible and inhibit communication and meaningful exchange.) A very unformulated proposal is that we should move beyond this “one size fits all model”. Think not about IRBs but about human research protection programs; think about different kinds of research institutions, and other different sites that do different kinds of research. Ethical reviews should be able to tailor their reviews to the kinds of research being done in a particular area. Ethical reviews can have core components but engage groups differently depending upon the kinds of research that needs to be reviewed. (Please see slide presentation in Conference Booklet.) F. Panel Six - Research Ethics and Community Partnerships The conference devoted much time to the ethical issues that arise in developing community partnerships and the challenges of diverse perspectives and cultures coming together to conduct CBPR. Below are six presentations from this panel which were divided into three panel sections with different emphases. Section One: General Considerations in Community-Academic Partnerships Linda Silka, Co-Director, Center for Family, Work and Community and Professor, Department of Regional Economic and Social Development, University of Massachusetts Lowell Linda Silka presented work that she and her colleagues have conducted to develop a “Research Cycle Approach” for CBPR. This Research Cycle Approach is described in detail in the appended papers. Linda Silka stressed that when carrying out the steps in collaborative research it is equally as important to think about when something is done as it is to think about what is done. It is also important to consider how time is represented with a partnership. In one partnership project, she worked with Cambodian and Laotian leaders in Lowell and at one time presented a typical research timeline. They pointed out to her that the January to January timeline seemed very linear, and that if there was indeed to be a continuing relationship between the community and the university, that relationship should be represented as more cyclical, as not ending simply because of the arbitrary conclusion of a particular calendar year. A time line, in their view, ideally would reflect seasonal cycles. The Southeast Asian community carries out activities in winter, fall, and other seasons and it would be useful if the research process in the Research Cycle Approach mirrored these family and community activities.

32

The Research Cycle Approach, to be fully successful, will require significant changes in the research process. How, then, are these changes to come about? Linda talked about her role as a university person and pointed to possible ways that the research cycle approach might be incorporated into research carried out in university settings. She was careful to note, however, that substantial change would be required if such an approach were to successfully change how universities engage in research partnerships. She pointed out that a window of opportunity has now opened for pursuing these changes. That is to say, universities are expected to undergo significant turnover in personnel in the upcoming decade, with many older faculty retiring (on the order of 25- 40% of faculty are expected to retire in the next decade) and new faculty will be hired who may be more willing to adopt new roles and new forms of research partnerships. Thus, this is the time to pursue institutional change, such as those involved in building the concept of partnership into research activities.

What might such partnerships look like and who would take the leadership role within universities? At a recent conference in Canada on community partnerships, Victor Rubin observed that there are three types of faculty who become involved in community research partnerships. First, there is the “advocate.” This is someone who builds a partnership with the community but typically remains the only person involved from the university and no attempt is made to involve others. Then there is the “broker.” This is a faculty member who brokers relationships between the community and university in order to bring more programs of partnership into the university. Finally, there is the transformer. This is a faculty member who is intent on changing university policy. Such a leader might focus, for example, on transforming IRB policies so that they better meet the need of the community. A transformer might also look for ways to overcome the obstacles to change, might involve students in new forms of community partnerships and might work to have broad based interdisciplinary partnerships become more and more a part of the institutional mission of a university. Now is the time to focus on achieving this sort of institutional change made possible by encouraging the work of transformers.

Why are these changes within universities important and urgent? It is still too often the case that researchers continue to begin their research without adequate involvement of the community that is expected to participate in research or be its beneficiaries. For example, Linda pointed to the recent case in Lowell of a researcher who obtained a grant to study the Cambodian community without ever having sought input from the community or consulted the community about the particulars of the planned research. Once the researcher was awarded the grant, the scientist then came to Linda’s Center expecting to be shown how to make contact with the community. Yet, all of the crucial decisions had already been made. Linda stressed the importance of universities finding ways—such as through using the research cycle concept—to educate researchers in the research partnership process and all of the key temporal steps. She pointed out that researchers often point to the time it takes to build a partnership and work with the community but she stresses that researchers take time over and over again to make sure their methods and data are rigorous. In ensuring that a good partnership is built, the same kind of time should be invested. Linda's Center has developed “Research Ethics Tip Guides” which have been distributed throughout the university and the community. These guides were the result of her work with graduate students and community members as she taught courses and workshops on research ethics. She asked students and community members to develop tip sheets that could guide their work as well as that of others. In closing, Linda emphasized the need to focus on institutional change and she reminded the audience that this is an important time to pursue this change as we need to reach people early in their careers so that they do not automatically adopt traditional research models.

33

Linda was asked about the pros and cons of developing a set of rules for working together in her partnership with the Cambodian-Laotian community. She responded that it is often difficult and even counterproductive to generate prescribed rules for working together. She also pointed to the importance of looking for alternative ways to bring the community, researchers, and policy makers together. She offered the example of a city department in a nearby city that wanted community input for their work and complained that the community was not coming to their meetings. The environmental justice partnership suggested an alternative model for bringing people together. They decided to create a festival where people could share their best practices from their various cultural perspectives (African, Brazilian, Southeast Asian...) of how they would approach these problems of environmental health. This approach illustrates a model of “let’s change the venue for participation where it is not so defined about who listens to whom.” A festival is one example of a way a sharing of perspectives rather than ending up with dominance of one perspective over another. (Please see full paper in the Conference Booklet.) ______________________________________________________________ Swati Prakash, Environmental Health Director, WE ACT (West Harlem Environmental Action, Inc.) New York NY, Swati Prakash introduced WE ACT as a community-based environmental justice and health organization that was founded in Northern Manhattan in 1988 and dealt with a sewage treatment facility as its first project. WE ACT conducts community-based organizing, advocacy, research and action. WE ACT found in their work that they needed to build scientific credibility to their campaigns. In order to access technical tools, to conduct air monitoring and air quality, in documenting environmental exposures, health status and effects, they needed university resources which would help to build community knowledge, capacity and leadership. Now, WE ACT is working with the Columbia Mailman School of Public Health to assess the impacts of environmental exposures on children’s health, and to monitor the impact of diesel exhaust on respiratory health, using CBPR models. The principles of CBPR that they require include the principle of being involved in the planning of all aspects of the research process; i.e. residents should be involved in analyzing and collecting research data, organizing and developing research questions, determining appropriate research methods, and understanding conclusions. CBPR research should support advocacy/activism campaigns; research should be translating into health campaigns. WE ACT has been organizing against bus depots whose diesel pollution triggers asthma attacks. In a partnership with Columbia University, they are documenting exposures and health outcomes, specifically at four schools. In 1996, WE ACT trained youth groups to measure contaminant particles and levels of black carbon associated with black diesel smoke. They also have community-based air monitoring near the many diesel bus depots located in the community. The results of the asthma and diesel rates study were translated for the community in a community journal. Another finding has been that prenatal exposures to certain air contamination is associated with decreased birth weight in babies in Northern Manhattan and the South Bronx. WE ACT reports that the university scientists train the community on environmental health science concepts through workshops. WE ACT highlights the signs of a good partnership. (1)Community-based organizations may set out agreements at the outset with certain non-negotiable items. (2) There is mutual trust and respect with an understanding of mutual struggles and daily constraints. (3) There is autonomy and self-determination; people of color need to see that they can do the work themselves.

34

(4) Researchers need to report results back to the community quickly; they also need to be invested in the community and understand that communities leverage a lot for researchers. Communities can build the careers of researchers so communities and researchers can build social change together. Researchers should be available to the community with or without funding. (5) Communities should guard against researchers using the partnership as the university’s community outreach as it works against the university building its own consciousness and sensitivities. Swati stated that the funding for research vs. organizing is very disproportionate and CBPR research should guard against the pull of academic needs. In stating the challenges of WE ACTs work, she highlighted some important issues: There is a layering of institutional power dynamics with interpersonal differences and conflicts, a clash of partners. Institutional privileges sometimes mirror or amplify race and class privilege. There is a need for stepping back at times. There are problems with advocacy; problems of publishing data results quickly. Partnership implies equal power but is rarely the case with a community organization and a powerful university. (Please see slide presentation in the Conference Booklet.) Section Two – Community Partnerships: Issues of Race, Class and Cultural Contexts in CBPR Vivian Chavez, Dept. of Health Education, San Francisco State University, “The Dance of Race and Privilege in Community-based Participatory Research” Vivian Chavez began her presentation with a description of dancing; that it is a feeling of freedom, self-expression; it is energetic and fun. But sometimes in dancing, the rhythms can be hard to follow with a lot of different people. Dancing is a metaphor for her when she thinks about what is needed among many diverse people who come together to do CBPR. Recently Vivian was asked to be an evaluator for a CBPR project that sought to do a community assessment among youth and the problems that lead to youth crime. In this project are Mexicans, Vietnamese, and Central Americans. She cites five things that were hard about this cross-cultural project. (1) People of color are not usually the principal investigators of a grant – the principal investigator (pi) is usually a white person. The bridge people between the community and university are often the people of color. The pi relies upon research assistants as those who know everything about the community. As in San Francisco, the Bay Area community is hugely diverse. It is hard also to define what are ethnic communities. (2) White Privilege – We are always dealing with racism, with the historical traumas of every ethnic group’s oppression. Who has power and who makes all the decisions? (3) What are the goals of the research – what are the needs? Once you establish all the needs, it could be turned against an ethnic group. How will findings be used in a community assessment? It is important to establish that or it could work against you. (For example, a health outcome study showed that Hispanic women didn’t have high rates of smoking and alcohol consumption so why would they need services that other disadvantaged populations have.) (4) How do you say empowerment in Spanish or in Vietnamese – these terms are not easily translatable across cultures; these groups have questions about empowerment. How do you define sexual harassment for the purposes of a study with these groups? Vivian warns that categories and terms used in a study should arise from the definitions made by the communities. (5) Hidden transcripts – People will not readily say what is on their minds – to disagree, challenge or argue. Don’t assume that silence means they are happy with a survey (design or findings). To assume so leads to research interventions and results that lack an authentic community voice. In helping to overcome hidden transcripts, Vivian commented that you need to show that you can hear things that are hard to hear. This can help develop a culture and context where people can be open about their feelings.

35

(6) Don’t stop dancing when the music is still playing. Vivian warns of the need to stay in the dance even when disagreements and conflicts come up because who else will dance. (7) “Listen and listen” – It is important to always be listening. Speak about white privilege in interpersonal dynamics; privilege is always happening to some degree. Privilege is conferred by education, race, sexual orientation, gender or institutional affiliation and it is important to see how this privilege provides advantages to you in the dance of cross-cultural work. This is deep inner work that requires a long term commitment. Vivian quoted her paper: “The effort to understand racism and all its consequences is work done in the context of relationships. To empower a community, we must become a community, supporting and challenging each other as we implement culturally competent, power and race sensitive inquiry. Dancing forward, following the flow of the dance of race and privilege in community-based participatory research, outside researchers must become comfortable with not always taking the lead but dancing side by side with the community and sometimes following the community’s lead. (Please see slide presentation in Conference Booklet and full paper on V. Chávez, B. Duran, Q. Baker, M. Avila & N. Wallerstein, “The Dance of Race and Privilege in Community-Based Participatory Research“ in Minkler, M. and Wallerstein, N. “Community-based Participatory Research for Health”, Jossey-Bass 2003:81) _________________________________________________________________ Amy Schulz, Dept of Health Behavior and Health Education, University of Michigan “Mediating Values, Contexts and Traditions in Community-Academic Partnerships”. Amy Schulz spoke of the need to create structures and processes that create a more level playing field in CBPR activities. There are inequalities that are systemic in United States and these have implications for relationships within partnerships. Systematic differences in access to social, educational, health, and other resources must be addressed in partnerships. Each member of the partnership brings their own perspectives, experience and resources and their institutional bases. Partnerships become microcosms of the social realities in contemporary society. These inequities and differing perspectives can interfere with the ability to create equitable working relationships. For example, organizations have different access to resources; a small organization may have 1 -2 paid staff members vs. a large institutional base like a university. This is a power differential which translates into different availability/time and financial resources. What are things that facilitate the development of a partnership? (1) Shared commitment and common purpose. (2) Developing trust and demonstrating trustworthiness (3) Building structures, norms, and values that help people work together. (4) Supporting each other’s success toward the end of making all stronger in working toward the common goal. Amy Schulz commented that resources are helpful in creating partnerships before research & intervention activities begin. Members of a partnership come together with different perspectives, and those differences can each make important contributions toward a common goal. “It’s not enough to come to a community to do research; it is about solving problems of the community members.” (quote from a Detroit Community-Academic Urban Research Center Board member). Thus, researchers engaged in community-based participatory research are engaged in a process of research and action with community partners, with the goal of addressing community concerns. Each member of the partnership needs to be clear about why they are at the table and what they need from as well as contribute to the partnership. The development of a common vision allows that partnership to define what it might achieve collectively that any individual member might not be able to achieve alone. Partners must anticipate conflicts – they will arise – and create

36

mechanisms that allow partners to address conflict in a way that moves the group forward. Listening, understanding and creating a common vision are all components of this process. Amy then gave two examples of processes used within the Detroit Community-Academic Urban Research Center to create a common vision and to promote equitable engagement of partners decision making processes. The first example involves creating a common vision of health concerns by engaging members of a partnership in a discussion of factors that contribute to health or illness and that moves beyond medical models of disease and illness. This exercise, initially developed by Dr. Barbara Israel (University of Michigan School of Public Health) invites participants to engage in a discussion of how stress affects health. As participants engage in such discussions, they begin to identify social factors that contribute to stress and that thus may erode health, as well as social factors that may help to alleviate stress and thus help to promote better health. The factors identified through such a process begin to link specific social conditions within a particular neighborhood to health outcomes, and help to build a common vision of the factors that contribute to health or disease within a particular community (see Schulz et al 1998 and Schulz et al 2002 for further discussion of the use of a stress process model to guide the development of an intervention research effort conducted by the East Side Village Health Worker Partnership in Detroit, MI). Factors identified through this process can be used to guide both the development of specific research instruments, as well as efforts to intervene and improve health. A second example of a process that can be used to facilitate participation and mutual influence within Partnerships is the decision-making process. A process used within the Detroit Community Academic Urban Research Center (Israel et al 2002) to promote equitable decision making has been termed the 70% Consensus rule. Partners agree to ask themselves whether they can support any given decision by 70% (or get behind any given decision by 70%). This offers a mechanism for making decisions on a consensus basis without requiring that each partner be 100% behind the decision. It allows for discussion of concerns or reservations on the part of partners, following which each person asks themselves if they can support the decisions by 70%. If so, they then go forward with the decision. It allows an opportunity for dialogue and discussion. In demonstrating trustworthiness, Amy suggested that every activity in partnership is an opportunity to demonstrate trustworthiness. It is critically important to follow through on what is asked of you; to be upfront about your limitations. The ability to voice disagreement respectfully is a sign of trust, and the ability to accept those disagreements respectfully is a sign of trustworthiness. The CBPR principles that guide the work of partnerships affiliated with the Detroit URC are an example of building structures, norms and processes that help to build and maintain partnerships. The principles provide guidelines for helping to assure that all work be mutually beneficial to members of the partnership, including researchers and community members. They offer guidelines for enabling the partnership to develop research questions together and to determine the research methods to be used. Implementation, results, and interpretation are activities done as a partnership. Partnership guidelines require some tangible benefits to the community in terms of policy, action or other resources, and provide guidelines for sharing power, accountability, authorship, resources (including budgets). Partnerships are microcosms of the inequalities structured into US social systems but also are opportunities for equalizing relationships. Working in partnership is a cyclical process of self-reflection and self-examination. (Please see paper on “Engaging Women in Community-based Participatory Research” in Minkler, M. and Wallerstein, N. “Community-based Participatory Research for Health”, Jossey-Bass 2003:293.)

37

Section Three: Community Knowledge Creation, Research Designs, Action Outcomes Phil Brown, Brown University, Sociology Department, “Qualitative Methods in Environmental Health Research, His full paper, published in Environmental Health Perspectives, is included in the attached booklet of conference papers. Because science and the scientific method cannot show pure truth, we need to have qualitative methods in environmental health studies. These methods can break new ground as we publish our work on advancing theoretical and analytical methods in environmental health journals. Phil introduced work in sociology that parallels the work that is happening in environmental health and environmental justice. Sociology has a tradition of “participatory action research,” which is similar to CBPR. Sociology has a history of social activism in its own practice. We study anything that society is dealing with, particularly race, class, sex and stratification issues. Sociology is concerned with social change, activism and advocacy. There is a tradition of “public sociology,” bringing intellectual skills together to further the advancement of society. At the American Sociological Association’s annual meeting in August 2004, sociologists will be coming together to work on environmental sociology which is shaped by environmental justice issues. In particular, we have organized a special session, supported by the President of ASA, “Twenty-Five Years after Love Canal: The Environment Health and Environmental Justice Movements.” It will feature Lois Gibbs, the internationally known activist who led the Love Canal struggle beginning in 1978, and who is now Executive Director, Center for Health, Environment, and Justice; Robert Bullard, probably the most widely known scholar of the environmental justice movement; and Ted Smith, Executive Director of the Silicon Valley Toxics Coalition, one of the country’s most innovative and successful environmental justice organizations. So there is parallel work going on in sociology that is similar to what is happening in environmental justice and community-based participatory research. Sociology asks the question “how do we study communities who are impacted by contamination or who are conducting CBPR? We want to conduct qualitative studies of communities, trying to situate what is going on in the entire community. Our questions are broader than environmental health questions. When we use qualitative methods, we know that we cannot have the complete truth about environmental exposures; we cannot quantify it completely. But in qualitative research, we can seek a complete analysis of the context of contamination in the community. Who are the different parties, players, conflicts and analyses? What are the triumphs and successes; the failures and drawbacks to community organizing around the contamination? We give more depth to the issue and discover the story of how people discovered the problem and tried to deal with it. Environmental justice research has two kinds of studies. One kind shows disproportionate effects (to people of color and/or to poor people) from contamination. It gives voice to the community affected. For example, R. Bullard’s “Confronting Environmental Justice: Voices from the Grassroots”, and T. Roberts and M. Toffolon-Weiss’s “Chronicles from the Environmental Justice Frontlines”. Phil provided a list of references of types of studies. These books recount the stories; how did the communities organize; how was the community involved. His list demonstrates the history of published work about communities impacted by contamination. Phil described the work of Kai Erikson and the ethnography he wrote about Buffalo Creek where a coal company put its wastewater holding and lime sludge in a creek and never checked it. After a rainstorm, a dam bursts and the waste from the creek flows down into a hollow and kills over a hundred people and wounds hundreds more and wipes out entire villages along the way. This was in 1972, and then came Love Canal, and a number of other examples of environmental assault, environmental injustice and health, that are written up in the literature.

38

Phil then described a book he co-authored “No Safe Place – Toxic Waste, Leukemia and Community Action”, the toxic contamination of Woburn, MA. This was a landmark study of popular epidemiology where community members and statisticians, epidemiologists and scientists worked together to interview residents and collect cases. Woburn industries Beatrice Foods and W. R. Grace contaminated municipal drinking wells with chemicals that led to childhood leukemia, resulting in a number of deaths. Lay people conducted the community interviews, a process that was later criticized as contaminating the data, but community residents’ assistance allowed the study to have over one-half of the community’s residents interviewed at an affordable research cost. The point of qualitative research methods is that science cannot show pure truth. In conducting research interventions for environmental health with communities, Phil emphasized that (1) we need flexible study designs. The research design should develop as we interview people and look at cultural contexts. The more people we interview, the more places we have to go for information. We should see how people talk about the problem and know what the conflicts are in the community about the problems as groups can split over how to deal with it. (2) How rich are the data sources. Phil stresses this as important to qualitative data collection. How much is there to know besides what we can see? Are there newsletters, can we dig into legal documents, government, medical, and scientific reports? Usually the information we collect is not included in journals as it is too big. We write books that describe qualitative methods. (3) Keep generating trust in order to access more information about the environmental health problems. Do your best for the community and the community interests in health protection. Sometimes you can get access to a community from professional contacts but sometimes you need to build it yourself. You will need to show the community that you will be there for them and go out of your way if they need you. (4) Empathy – Visible empathy to families affected by contamination has to be part of the research. I wanted to convey to Woburn residents a deep sense of their loss. In this way, the researchers change themselves as they feel the experience of the residents. I learned about a shift in the personal self and the heart. Does bias get produced from empathy? We can disclose conflicts of interest and go ahead. We should talk about the complexities and not have a partisan point of view. (5) Reflexity - You should find a way to acknowledge your position and hold a mirror to yourself. I am changed by the community but I help them to change. I help them to think about things that they might not consider. (6) Member validation – As a researcher, I didn’t want mistakes in the data I collected, nor would I want to misrepresent the community and violate their suffering. As such, I would show results to some (or perhaps in some cases, all) community members involved. When you give it back to them, the community members will enrich the data. Reprocessing will improve the data. It is very much like the research cycle approach that was discussed in an earlier panel – the data goes back and forth between researcher and community as each does more thinking about it. This also fulfills an ethical responsibility to the community. (7) Advocacy Science - Phil supports “advocacy science,” a term coined by Sheldon Krimsky. He believes that people need assistance from experts to protect themselves. He also stressed that the researchers work isn’t done in a community when a research investigation ends; the work is ongoing with the community over a period of years. We need to expand examples of advocacy science; we have to expand alliances for this, affect funders, IRBs and promote institutional change. (Please see full paper in the Conference Booklet.) __________________________________________________________ Marta Segura, Communities for a Better Environment (CBE), Los Angeles, CA, “Partnership Successes of The Communities for a Better Environment” Marta Segura stated that in the early 1990s, CBE got an environmental justice grant from NIEHS for urban pollution problems. The UCLA Center for Occupational and Environmental Health

39

assisted CBE with tools on community and GIS-mapping which helped to demonstrate correlations between disproportionate health impacts, pollution and minority communities. With UCLA, CBE documented health risks. They didn’t show causality but showed disproportionate patterns of respiratory disease and cancer, correlated with proximity of polluting facilities and neighborhoods. This scientific information was important to community mobilizing and policy creation .Through organizing, CBE was able to lower the South Coast Air Quality Management District acceptable risk standard for cancer from 100 per million to 25 per million. Of course, CBE had targeted for zero per million. Overtime, CBE developed working relationships with environmental health agencies on local and state levels and conducted education on environmental justice issues. The mapping data was taken to agencies and the state legislature and it helped to institutionalize environmental justice policies and action items. Now there is a training program for government agencies on environmental justice issues. Power-building combined with the right information leads to social action. Marta then showed a graph that demonstrated risk factors for wealthy residents who are people of color. Latinos and African-Americans are still more exposed to chemicals than whites despite increasing affluence. This mapping demonstrated, that even when we control for wealth, Latinos and African Americans are still more exposed to pollutants than their white counterparts. This has helped to strengthen the Environmental Justice argument that environmental racism does exist and has existed, in addition to all of the bad planning and lack of inter-agency communication that has lead to bad zoning and land use patterns. CBE has started a project with UC-Irvine with Dr. Raul Lejano (a person of color) who will bring other people of color into a research team. Currently, CBE is struggling with challenging the expansion of the Southeast LA freeway (the 710) which is a major corridor for the transport of goods from the Port of Los Angeles, and where 60% of all the goods actually leave the state to as far as New Jersey. Consequently, the diesel pollution is disproportionately impacting the predominantly Latino community of Southeast LA for goods that don’t even remain in the region. Nearby, there are also many chemical, manufacturing, battery recycling and plating facilities. Now they want to expand the freeways and increase the exposure of diesel exhaust. Marta stated that it has been estimated that 75% of cancer cases are caused by diesel exhaust. CBE partnered with UC Irvine to bring to light the community’s experience through a participatory action research method. The results of this study can then be sent to policy makers at all levels deciding on the expansion of the freeway project. It is Marta’s opinion that if the Freeway is expanded, the State and Federal Governments will basically be subsidizing the multi-nationals that import to the region while not even considering the social and health costs of the pollution being created by the diesel trucks which transport their goods on the these freeways that criss-cross through Latino and African American communities. Marta ended with these summary points: (1) CBE has integrated CBPR research into all our campaigns for protecting community health. (2) CBE wants to ask our community how to make it more sustainable and more livable. (3) We will be able to demonstrate a persistent pattern of environmental compliance and failure in the communities of color (4) CBE is trying to pass many bills and laws for regulatory changes for protecting SE LA V. Conference Plenary Discussion: Outcomes and Recommendations The conference sought to promote opportunities among both speakers and participants for dialogue, problem solving and future planning for research ethics. Question and answer periods after panel presentations and a half-day of break-out groups and summary plenary session on the

40

third day of the conference produced the following discussions of issues, needs and proposed solutions to research ethics topics emphasized by the conference. The break-out groups were organized according to the panel topics and so the discussions are organized according to the following panel themes: Community Research Protections and Community Rights, Reshaping Science: Integrating Community Values and Multi-cultural Knowledge Systems, Institutional Review Boards, Funding Needs, Community Partnerships: Development and Resources, and Institutional Change for Research Ethics. 1. Community Research Protections and Community Rights Community research protections discussed include all issues related to protecting the community’s interests in research relationships with academic and other professional researchers. Issues of the community’s right to informed consent and respect for autonomy are an integral part of these discussions. A. Challenges in Community Controls for Research Activities and Next Step Priorities: 1. Participants raised specific issues related to community rights in research: Who owns the data? What ethical issues arise in the co-ownership and co-authorship of data? Who is the community? (too often ‘the community’ is not self-defined but instead reflects research populations such as prisoners, patients in mental hospitals, military personnel or geographically-bounded groups that become a community in the researcher’s eyes because they can easily be identified or accessed,. 2. Community members pointed to the frequency with which they have been overstudied in their settings: they recommended that researchers begin to recognize the effect of “research pollution” (e.g., reticence, despair, mistrust, non-disclosure) in overstudied, underserved communities and populations. Overcoming these negative impacts should be a priority. Identification of the players that contribute to the overstudy (players such as funders, research institutions, researchers and community partners, corporations, military, and others. will be an important first step in addressing this long-standing problem. 3. Too often research continues to be designed with little concern for community needs. IRBs and funders have made strides in recognizing individual rights but little progress has been made in understanding and recognizing community’s rights. Further identification of community rights should be a priority. 4. Community knowledge, needs assessment and methods of research too often receive little respect from funders, IRBs, and the scientific establishment. 5. Too large a gap continues to remain between science, regulation, and public knowledge about what research has shown in terms of the health impacts of contaminant exposure and the like. Companies for example may have access to information that remains unavailable to communities and to individuals. For example, a worker’s level of contaminant exposure may be monitored by insurance companies; these companies can then use this information to limit access to insurance. B. Challenges in Community Representation and Outreach and Possible Next Steps 1. Those who are working to organize grassroots people for community research protections noted the continuing challenges that lie ahead. This important work will require resources and enormous effort if it is to succeed. 2. One of the needs is for more case studies on field experiences that describe successes and challenges in reaching the truly voiceless and underrepresented community members as well as prison populations, mental health and disabled populations. Case studies of this sort would help community research partners in building experience to adequately reach those groups.

41

C. Tools and methods offered to address challenges: 1. A parallel track of ethical reviews for proposed research studies should be considered. Under such an approach, the community would set up its own parallel ethical review that would take place during the same time that being carried out by the research institution. 2. Frequent ‘check-ins’ should be encouraged. That is to say, researchers should frequently check in with their community partners for review of research plans. Such check-ins should occur once initial relationship is formed, throughout the process, and as the results are obtained and disseminated. 3. Funders should begin a process of requiring community review and participation in research grant proposals as NIEHS requires evidence of community-researcher collaboration in grant application. 4. Communities should consider developing community research councils or community-based review boards that would be responsible for approving projects and protecting “community rights”. Boards of this sort could facilitate greater accountability on the part of researchers. Such committees can then choose researchers based on their own research agendas. A committee can address the researchers before the study begins to assess the appropriateness of a study and its methods and if the study is in the best interest of the community. Guidelines and requirements of funders could become more flexible to represent researcher-community groups. 5. Attention should be given to creating individual consent forms that conform with the needs and understanding of the community as well as meeting the institutional requirements. In Native research practices, for example, individual consent forms are often written in a language that the local people can understand, and these forms are written with sensitivity to culture and to indigenous knowledge. A role for a community council could be to review the cultural appropriateness of the language included in the consent form. 6. Greater emphasis should be placed on working with all types of higher educational institutions. Let us not privilege partnerships with just powerful institutions (i.e. the HBCUs); let us instead include non-traditional researchers in considerations of funding grants (grassroots groups, community colleges and trade schools). 7. Attention should be given to creating “Community-centered code of ethics” that would guide community research investigations and the review of grant proposals. “We need a code of ethics for environmental health work and ways to enforce ethics policies when there are violations.” 8. Emphasis should be placed on creating new models on how to ‘educate’ communities on the risks and benefits of research methods, particularly as new methods emerge. These models are urgently needed to educate communities about their rights in research. 9. Emphasis should be placed on representing community values more effectively within ethical perspectives. 10. Research partners should turn their attention to infusing research protocols with a specific focus on equality and empowerment; capacity-building should be a part of research grant. 11. We need to make a commitment to go back to our colleagues and share what we learn. Describe the next step in taking next steps. Some examples of next steps include reaching out to others in the community who would be interested in these issues (Buffalo group). 12. Consideration should be given to making greater use of popular culture media to communicate messages to the broader community (i.e. hip-hop for youth). 13. We need to find ways to understand and respect traditional knowledge remedies/practices, to learn from them by giving the community recognition or royalties, if it should be repackaged, sold or disseminated. 2. Reshaping Science: Integrating Community Values and Multi-cultural Knowledge Systems The discussions on “Reshaping Science for Environmental/Public Health” sought to deal with the complex ethical issues of different values in knowledge production and what represents scientific truths. As seen from the speakers’ presentation, limitations of the western scientific method and

42

values of “objectivity” can hide power relations and provide incomplete understandings of health impacts and environmental damages. Community knowledge of health and environment is important to CBPR. Additionally, cross-cultural values on knowledge need to be included in CBPR methods. Native science models provide an expanded definition of knowledge, truth and the integration of subjectivity and objectivity in knowledge production. A. Challenges 1. There is an inherent discomfort among researchers in discussing how to navigate a relational model in science, the western science model vs. the native science model. Race and class issues are a part of this discomfort. Should native science assimilate to western science or maintain its unique perspective? 2. Generational gaps in indigenous communities often emerge when these issues are discussed. Not infrequently there are struggles between tribal governments and popular movements within tribes. 3. Institutional racism and burden of proof would also impede the use of other cultural knowledge systems. Dollars, time and work are needed to educate the power structure. 4. The very notions of objective science and western experts are culturally-created. 5. The Daubert Criteria (defined on pp.4,18) reflects little appreciation for and understanding of Native culture, science and values. 6. Community knowledge is often negated by popular culture. In “Objective science”, community knowledge is seen as destructive to their constructs of truth because it is considered anecdotal. 7. One participant highlighted problems in language again by saying that he doesn’t want outsiders to “validate the community’s local knowledge”; our knowledge is valid to us. B. Recommendations 1. Through native practices (i.e. storytelling, oral histories, arts, dance, ceremonies, - building a mythic relatedness to life forces), westerners can become more indigenous to their culture. 2. Ecological models of science should be promoted. Promote the relational model: respect, humility, empathy; encourage research outreach/education throughout school; teach, encourage diversity and cultural sensitivity throughout school. 3. As western science seeks more holistic models, scientists should look to the rich examples from indigenous science models that already exist. 4. An understanding of identity should be promoted; self-definition of culture and pop culture. 5. Researchers should try to gain a greater understanding of how communities view illness and health; health is a concept of balance in indigenous cultures; it is difficult to separate concepts of health within indigenous systems. 6. More work should be done on how to take political, cultural, social, racial contexts into account when doing research. Training or retraining of scientists with these issues is needed. 7. Steps need to be taken to challenge the notion that corporate science is the only objective science. As a part of this work, steps need to be taken to alter the perception by courts of what constitutes a critical experiment that will hold up in a court of law. 8. Strengthen the subjective as a way to truth. 9. Teach more history and origin of western scientific thought. 10. We need to develop networks to challenge the power structure (the capitalist model). We need better communication among networks. 11. We need campaign finance reform to make changes. Redefine democracy and the way it is practiced. 12. Show the limited nature of current science and biased approaches.

43

C. Tools and Resources 1. Priority should be placed on finding ways to provide more access to information on science ethics. 2. Greater attention should be given to articulating the value of “subjectivity” in scientific truth; case studies, articles and presentations that bring out the value of subjectivity in science need to be promoted and disseminated. 3. Examples of triangulation of quantitative and qualitative truths should be widely disseminated. 4. Effective models of community or tribal IRB such as the Akwesasne and Yakama models should be widely disseminated–Medical ecological models are also important alternatives to community-based research or expansions to CBPR. 5. Courts are increasingly using a ‘Weight of Evidence’ (WOE) approach. This approach is being used increasingly in court and should include contexts with facts. We should promote more work that assists communities in developing contexts in research studies. 6. More emphasis should be placed on teaching about community models and how these diverse models of knowledge production achieve their successes. 7. More attention should be given to ensuring that Paolo Freire’s work on empowerment and participatory action is more widely known within the research community. 8. Community-based participatory research literature is another important model. 9. Greater emphasis should be placed on integrated education as an important model for strengthening community-based participatory research 10. Political ecology model is another useful alternative. People should be encouraged to do website searches “under political ecology” for more information. 11. Workshops are needed for medical students so that they will understand the context of patient illnesses and diseases in their lives. 12. Scientists should be encouraged to read the book “Trust Us, We’re Experts” as a way to learn why communities have grave doubts about the trustworthiness of experts. Next Steps

1. Strengthen networks in community health promotion 2. Educate communities on risks and benefits of various research models 3. Use these models to educate communities to their rights

Immediate Steps 1. Report on Ethics Conference 2. Disseminate tools and resources to all participants. 3. Take what we have learned back to our communities and organizations 4. Educate and reeducate researchers, scientists and policymakers

3. Institutional Review Boards (IRBs) The IRB break out group deliberated on the challenges highlighted by the speakers that community participation and representation on IRBs are inadequate, with many difficulties in the current structure. They highlighted the following challenges and potential proposals for change. A. Challenges 1. More community participation in all IRB processes is needed. Currently, community participation is limited by lack of funds to support the time of participants from the community, lack of training available to allow them to participate fully, and lack of sensitivity on the part of IRB scientist members to integrate community members into their process. These problems reflect the emphasis of the individual protections over the community protections in IRB principles.

44

2. The challenge of bringing about more community participation is a complex problem and it will require a complex solution. Both a “bottom up” and “top down” strategy will be needed to succeed. B. Recommendations 1. Community participation should begin well before the IRB stage of the research process, that is, at the design and question formation stage but we will limit our discussion here to the community participation in the IRB. 2. Funding organizations, such as the NIH, should require that a certain percentage of funds be used for the training and support of community members involved in research partnership. A precedent exists for such an approach: At present, 1-2% of funds are usually required to be earmarked for evaluation of the outcome and process of grant. Therefore, earmarking of funds for specific purposes deemed important is possible. However, communities may not want to wait for this kind of top level change to occur. They belong at the IRB “table” and should make that happen if that is the community conviction, prior to waiting for changes at NIH, NIEHS, or any other funders. 3. Academics sit on IRBs as part of their regular job responsibilities. Community members are generally unable to do so. It should be recognized that community members may require a stipend to serve on IRBs during regular daytime hours. 4. Financial compensation is only one part of the barrier to community participation. Meaningful community participation would also require additional training. Community members often need some analytical training as well as practical training on the roles and responsibilities of IRB members so that they will understand the proceedings. There is of course the danger that too many requirements might be added, and grassroots members of the community would then find it increasingly impossible to participate. Often the people from communities of color who participate on IRB boards are traditional people and not representative of the concerns of the grassroots members of the community. 5. Training might include materials that could be produced as a project of NIEHS, NIH or the Institute of Medicine. Perhaps a videotape of a typical IRB proposal review session could be produced, and each of the participants could be introduced and their role explained. Some of the language could then be described and the typical issues could be explained, prior to a community member actually sitting on the board. 6. Training for scientists who serve on IRBs would also be necessary if the new IRB strategy we have proposed is to be successful. Speakers throughout the conference reported that current IRB scientists are often unfamiliar with CBPR approaches and often recommend research changes that take away from the collaborative processes inherent in CBPR approaches. Research scientists need to be trained on CBPR principles and need to have a better understanding of the successes that can be achieved from CBPR research. 7. IRBs should work to make their mandate more visible to the public who, in effect, are the consumers of their services. Institutional Review Boards should show how they operate and make certain that communities have access to this information. 8. Community partners should have greater opportunities to review IRB forms for what is and what is not included to ensure individual and community rights. 9. The time commitment expected of community IRB members could be reduced if community members were not required to sit in on all IRB proceedings. They could, instead, be part of a community subsection of all IRB proposals that affect the community members. If such an approach were to be taken, careful consideration should be given to how community research will be defined. The definition could be broad, and encompass basic research such as cellular genetics research or the definition could be more limited and include only those studies that directly affect community-based human research.

45

10. Publication of discussions and deliberations on community issues and concerns should be a priority. There is a journal, called IRB, which is published by the Hastings Center. The journal editors have already expressed interest in this issue of community roles in IRBs. The new incoming editor said that he would be interested in looking at work that resulted from this meeting regarding the community participation in IRBs. 4. Community Partnerships- Partnership Development, Resources and Networking Discussions on community partnerships offered a rich source of field experiences and reflection for the ethical issues involved in partnerships between community members and academic researchers. Many reflections center on the bridging of academic cultures with community cultures for equity and empowerment in research investigations and community action. New recommendations emerged on language issues and the need to understand spiritual values of partners. A. Challenges 1. Much work is needed to clarify and strengthen language used within research partnerships. Questions that need to be addressed include: how we use language, how we need to understand and respect community languages and terms in communication exchanges. Particularly an emphasis on language is needed as it is used in bringing together different groups such as IRB representatives, academics and community members. We need to pay attention to language not just changing language but going beyond language. 2. Resources continue to be urgently needed for dealing with the complex issues raised within research partnerships that involve multiple languages among multiple subcultures. 3. Policies for community-researcher collaboration are important but we also need to train partners in partnering skills. It will be important to continue to monitor the human interaction process as the research project goes on. A research partnership that begins well may encounter problems later that need to be monitored. 4. Partnerships that bring together researchers and communities need to devote time and attention to learning more about each other. For example, in Buffalo, there are 30 different cultures and if partners are to learn how to respect each other they need to work together. Such steps are likely to reduce tendencies of health departments and other “experts” to talk down to the community. 5. Bridges need to be built with other groups who are also working for social change (i.e. youth groups). B. Recommendations 1. Educational practices by which researchers learn about ethics need to be improved. Priority should be given to developing a curriculum for researchers on ethics training that includes issues of language 2. Researchers also need exposure to a curriculum that includes the discussion of race, racism and culture in the research process. We need to bridge the gap between social science and research in the curriculum. We need cultural audit tools. 3. The development of an information network should be a priority, although the challenge of having sufficient resources remains a struggle. 4. When entering a partnership, know that you will disagree so that you should agree to disagree. This is a part of “equal partnerships”. We need to be ‘bending’ in our partnership roles and need to learn to do that. For example, medical schools could have students do internships in the community and gain some cultural sensitivity (i.e. Minority Health Coalition). 5. We need to make a commitment to go back to our colleagues and share what we have learned. We also need to make a commitment to take the next steps to bring our recommendations to reality. Our next steps should include reaching out to others in the community who are likely to be interested in these issues (Buffalo group).

46

6. More effort should be put toward identifying the good ideas that have already been tested and can be put to work in new settings and with new partnerships. 7. More effort should be put toward publishing best practices as well as using conference settings to share ideas, abstracts, and scrapbooks of work. 8. More effort should be put toward the development of strategies for partnership monitoring; these efforts should include a coaching process and should highlight models for talking about occasions where ethical principles have been violated (Note about pulling license of researchers who use bio. samples for secondary purposes; other problems with genetic sampling, etc.). 9. More emphasis in community research partnerships should be placed on working with Historical Black Colleges and Universities and not just building relationships with large research institutions. HBCUs are likely to be more responsible partners than major research institutions. 10. Follow-up on related ethics in research conferences: specifically “: Ethics in Research” to be held in Alaska. 11. More emphasis should be placed on making capacity-building a part of research grants. For example, options might be pursued for getting community members into advanced degree programs and professorships; or stories could be put out on community members who have entered academic fields of environmental health research. 12. A key question that universities should always ask is “what can we leave in the community after the study is done?” C. Special Recommendations on the Need to Integrate Spiritual Values in Community Partnerships 1. Infuse a research approach with findings that show the ways in which spirituality matters. In evaluations, pay careful attention to an interdisciplinary approach that includes spirituality. 2. An important part of understanding each other’s context and values is to understand each other’s spirituality. Greater attention should be given to infusing partnerships with spirituality. (By doing so, we will develop a better sense of our own spiritual values as well as those of our partners. Spirituality may be someone’s guiding compass or science values may be someone’s guiding compass. (See communitariannetwork.com and “His Brother’s Keeper” Amitai Etzioni.) 3. We suggest a conference on spirituality and partnership building. 5. Funding Needs in Promoting Ethical CBPR Approaches Participants highlighted these needs and recommendations for dealing with issues related to the need for increased funding for Community-based Participatory Research. A. Recommendations for Increasing Support to CBPR 1. Horizons should be expanded to identify other avenues of funding. Key individuals in various organizations who can aid in securing funding should be identified. 2. Community-based organizations should identify individuals or mainstream organizations who might be able to undertake major lobbying or education “on the hill” as well as with philanthropic organizations or foundations. A collaborative campaign, open to participants of this conference, should be organized. 3. Emphasis should be placed on developing a tool, matrix, or manual that outlines funding criteria of foundations. Workshops should be developed on how to write proposals based on the strategies of the funder. 4. Foundation people should be invited to gatherings such as the “Ethics in Research”. 5. Funders and researchers need to reconsider the ethics of channeling more research dollars into already over researched issues when the research does not include any strong action component (people’s lives don’t get better because of this research). 6. Funders should consider providing financial dollars for pre-research planning and these should be provided to community organizations.

47

7. In discussions with an EPA representative, a participant asked if EPA could fund proactive baseline studies before there is an environmental disaster, hot spot or bioterrorism. There could be some self-selection of communities and EPA could select sites. 8. Another recommendation was that community members be represented on an EPA funding board (www.epa.gov/ttn/atw - under urban strategy). 9. Nontraditional researchers (from grassroots groups, community colleges and trade schools) should be included in considerations of funding grants. 10. Some consider the “Environmental Justice” grants a mere pacification to the problems of contamination, sometimes community leaders lose perspective with setting priorities that accommodate funders. Funders’ values can dominate community values in order to obtain and keep grants. 11. Evaluation Issues: Designing Evaluations for Funding Agencies: Participants were discussing how evaluation outcomes may be different than funders are used to seeing and include outcomes in education, tools and policy changes. How do we document success? How is this evaluated? What are benchmarks? For example, NIEHS needs input from the grantee in developing evaluation measures. Write the proposal language to meet specific outcomes. Develop specific criteria for meeting outcomes. Evaluation needs to be mindful if the outcome is negative that the project or test is wrong; this is to be learned from and given a positive review on the negative outcomes. 12. Develop different avenues for EJ funding. 6. Institutional Change for Ethical Research In several conference panels, the need for institutional change in research institutions was emphasized, particularly for universities. Several recommendations were made about working on the larger need of requiring universities to become more a part of the community than has been the case in the past and creating structures and resources for assisting the communities where they are located. University values need to become more attuned to community needs and not merely mirror the corporate values and measures of success that are often individualistic and materially-oriented. As communities deal with multiple needs of health, social, educational and environmental problems, they need to be able to draw on interdisciplinary support from universities. Universities often struggle to fulfill these roles because university departments struggle to be interdisciplinary. Recommendations: 1. We need to challenge the corporatization of universities as universities should be doing more to provide support and protection to communities. 2. Get a synergy going between the university’s policy departments and environmental health departments. Collaborative health approaches can occur within the research institution. One can build an institute for environmental health collaboration inside the research organization. 3. It is possible to measure the success of each institute project on the total dollars brought into the community. The institute will look carefully each time for the best CEO organization. VI. Conference Participants and Feedback One hundred and seven participants attended the conference. Participants included 50% community researchers representing over 40 community health organizations across the country; 40% academic researchers from departments of public health, medicine, environmental health, epidemiology, sociology, religion, psychology and environmental studies; and 10% government researchers and state/tribal health departments. The conference recruitment was racially diverse with 26% African-American, 16% Native American, 14% Hispanic, 6% Asian, 3% other and 42% white.

48

From written and oral feedback, the conference was considered highly successful…” the cultural diversity, the strong presentations and creative ideas were very impressive.” Many participants were very pleased at having such diversity at the conference; “keep it diverse, we need this exposure to each other”. “I appreciated the diversity in opinion, race, culture and geography”. Several participants requested more case studies from rural areas. Participants also requested the attendance of more funders and foundations at future conferences. The conference’s emphasis on learning from field experiences was very well supported. “Most rewarding was to find out from other participants that the strides we have made in our community are what others would want. Vary validating for me!” “The field experiences were phenomenal!” Participants highlighted the opportunity to just focus on ethical issues. “The conference gave me a complete overview of all aspects of ethics from the different points of view of researchers, universities, and other communities that participated in the conference”. Other participants appreciated the expertise of the diverse representatives, the sharing of cultural values, contexts and humanistic issues with scientific issues. The participants reported that the conference was very useful to their work in research partnerships. It will help their work in community review councils, in IRB participation and in building better relationships for research. The conference was extremely helpful to some for local and national networking. “The networking was beautiful”! The conference assisted many in thinking more deeply about research ethics issues. “The conference will help our work in strengthening our ethical codes”. Many faculty reported that the conference would be helpful to educating students and faculty. When asked what topics or considerations are needed for future conferences, participants stressed the need to improve language issues with one another. There needs to be more sensitivity to multiple community languages and linguistic styles. With all the diversity of needs and groups, several participants recommended more focused facilitation and more time at the end of each session for reflection or talk back sessions where presenters receive questions back from the participants. The participants identified other topics that should be explored in future gatherings. These included more case examples and discussion of “definitions of community”, problems with multiple identities and building more community representation in CBPR work. More workshops and case experiences with data ownership, copyrights, intellectual proprietorship, privacy and plagiarism. Several participants cited the need for further work in exploring values of researchers and values of communities in working together in CBPR partnerships. More work on cultural sensitivity in needed. This can be promoted through self-inventory, discussions of ethics and culture, through discussions of spiritual values, religion and dynamics of spirituality. Discussions on class, race and educational differences are needed. Even more diversity could be represented with disabled populations, genome-targeted groups, the mentally ill and underrepresented community voices. Other topical areas highlighted were problem-solving on the lack of ethics of some governmental agencies and bringing CBPR methods to scientists who are currently not using these models. More information on court cases on community struggles, synopsis of bills, cases and judgments would be helpful. Much more work is needed on ethics training for academics. How do we also build leadership in communities for nontraditional leaders to gain some power versus just traditional community leaders? Many participants stressed the need for more conferences on these research ethics topics. Annual conferences would be important. We need to move ethics forward on local and national levels and need to work as a group to do this.

49

VII. Conference Postscript This report has a supplemental booklet of power-point slide presentations and research papers that accompanied the presentations. The supplemental booklet is available on the project’s website www.researchethics.org. or by hard copy. The Collaborative Initiative for Research Ethics in Environmental Health is pleased to announce that in October 2003 we received funding from the National Institute of Allergies and Infectious Diseases of NIH for another three-four years. We will provide short course training at additional universities and an on-line course at UMASS-Lowell, training and outreach to African-American communities in the South through the Southeast Community Research Center and some outreach work in the Northeast with Latino populations. We will be conducting case study work and ethical reviews of human radiation research studies with populations exposed to nuclear weapons production and testing. We are developing new case studies and articles on related ethical issues in research and will be providing ongoing technical assistance, presentations and outreach nationally to communities and academic gathering on these research ethics issues. Please see our website for a new paper written by Ann Grodzins Gold on “Ethical Issues in Medical Anthropology, Different Knowledges and Same Bodies”. This paper addresses the tensions of folk medicine, traditional healing and their conflicts with western medicine. This paper grew out of one of our conference panel discussions. Several papers are upcoming on “Defining Community”. Also, please see the Fall 2003 issue of the Dept of Energy “Protecting Human Subjects” Newsletter for a special issue on the themes of our conference (email:catongm@ornl.gov). In the future, the project will seek to support the organizing of conference workshops to follow up on participant recommendations. We will be exploring funding for a conference workshop that will assist in furthering an understanding of differing values, contexts and spiritual traditions among CBPR practitioners. In several years, we will seek funding for a workshop on research ethics in radiation health studies. We will be planning additional conference follow-up work as a project team and we encourage participants to pass on ideas/information to us if they are planning related events or could use networking or other support in organizing events. We will be posting future regional or national ethics workshops or upcoming presentations to our website so please check on an ongoing basis or contact Dianne Quigley at diquigle@syr.edu or diquigle@aol.com.

50

Conference Participant List Dialogues for Improving Research Ethics in Environmental/Public Health May 30 - June 1, 2003

Chioma Adaku Tennessee Industrial Renewal Network PO Box 4202 Knoxville TN 37921 development@tirn.org chiomaadaku@yahoo.com (865) 637-1576 (865) 522-7476 fax Carlos Alicea South Bronx Clean Air Coalition South Bronx Environmental Justice Partnership 541 138th Street Bronx NY 10454 carlossb@southbronxcac.org (718) 742-5770 (718) 742-5772 fax Judith Anderson Toxic Waste/Lupus Coalition 25 High Street Buffalo NY 14203 judie851@aol.com (716) 835-7161 (716) 655-2245 Galant Au Harvard Medical School 164 Longwood Avenue 2nd Floor Boston MA 02115 galant_au@hmsharvard.edu (617) 432-3020 Elaine Baker Social Work Program, Dept of Psychology Albany State University Albany GA 31705 elaine.baker@worldnet.att.net (229) 430-4694 Darcie Boyer 790- Broadway Street #3 Lowell MA 01854 darcieboyer@hotmail.com (978) 934-4677

Cheryl Boykins Center for Black Women's Wellness Inc. 477 Windsor Street SW Suite 309 Atlanta GA 30312 cheryl@cbww.org (404) 688-9202 x 24 (404) 978-0281 fax Felipe Branford West Side Community Project 327 Niagara Street Buffalo NY 14201 WM22@buffalo.edu (716) 849-6751 (716) 849-6752 fax Alba C Breton South Bronx Environ. Justice Partnership 541 E 138th Street Bronx NY 10454 carolina@southbronxcac.org (718) 742-5770 (718) 742-5772 fax Julia Brody Executive Director Silent Spring Institute 29 Crafts Street Newton MA 02458 brody@silentspring.org (617) 332- 4288 (617) 332 -4284 fax Dr. Peggy Brooks-Bertram The Buffalo Project 25 High Street State University of NY-Buffalo Buffalo NY 14214 peggy.bertram@verizon.net (716) 832-7928

51

52

Greg Brown 25 High Street Toxic Waste/Lupus Coalition Buffalo NY 14203 npp-serc@pcom.net (716) 884-0815 (716) 884-0160 fax Phil Brown Dept of Sociology PO Box 1916 Brown University Providence RI 02912 Phil_Brown@brown.edu Tamyra S. Carroll Southeastern Community Research Center 4212 Wynfield Drive Baltimore MD 21117 tbird2000spel@hotmail.com (404) 290-4495 Manuel Castro Make the Road by Walking 301 Grove Street Brooklyn NY 11237 manuel@maketheroad.org (718) 418-7690 x225 (718) 418-9635 fax Olivia Ceesay St Lawrence University Canton NY 13617 oceesay@stlawu.edu (315)229-5222 Khan Chao Center for Fam Work & Comm 600 Suffolk Street Lowell Ma 01854 Kham_Chao@uml.eldu (978)934-4676 (978) 934-3026 fax Vivian Chavez Dept of Health Education (HSS 312) College of Health & Human Services San Francisco State University San Francisco CA 94132 vchavez@sfsu.edu (415) 338-1307 (415) 338-0570 fax

David Cole PO Box 754 Rooseveltown NY 13683 clan_bear2000@yahoo.com (518) 358-3384 (brother) Carolyn Crump CB# 7506 University of North Carolina CH Chapel Hill NC 27599-7506 carolyn_crump@unc.edu (919)966-5598 (919)966-7599 fax Dawn David ATFE PO Box 992 Hogansburg NY 13655 mfadden@westelcom.com (518) 358-9607 Linda Deer Onkwatakaritantshera Health & Soc.Services c/o PO Box 1440 Kahnawake, Qc. J0L 1B0 Canada (450) 632-5499 Treena Delormier Onkwatakaritantshera Health & Soc Serv c/o PO Box 1440 Kahnawake, Qc. J0L 1B0 Canada (514) 668-9832 Rebecca Dewey Student - Public Health 92 Old Bridge Road Concord MA 01742 (978)-369-8295 Barbara Driscoll US EPA OAQPS, ESD/PBSG C439-04 Research Triangle Park NC 27711 driscoll.barbara@epamail.epa.gov (919) 541-1051 (919) 541-0942 fax

53

Brandon Early 7103 Meadow Circle Riverdale GA 30349 earlyone504@aol.com (404) 4 1-3792 Lisa A Eckenwiler Duke University Medical Center Box 3040 108 Seeley G. Mudd Building Durham NC 27710 lisa.eckenwiler@duke.edu (919) 668-9009 (919) 688-1789 fax Pamela Evans Alameda County Environmental Health Dept. 1131 Harbor Bay Parkway Alameda CA 94502 pevans@co.alameda.ca.us 510 567-6770 510 337-9135 fax Jennifer Farley Student - IDCE 950 Main Street c/o IDCE Worcester MA 01610 (708) 805-2781 Marian R. Feinberg South Bronx Environmental Justice Partnership 541 E. 138th Street Bronx NY 10454 ssbcac@earthlink.net (718)-742-5770 (718) 742-5772 fax Joyce Gibson University of Mass at Lowell 16 Snow Terrace Littleton MA 21460 joyce_gibson@uml.edu (978)934-4618 (978)486-0260 fax

Ann Gold Department of Religion Room 501 Hall of Languages Syracuse University Syracuse NY 13244 aggold@syr.edu/agg2@cornell.edu (315)443-3861 (315) 443-3958 fax Lucine Gordon Boston University SPH 100 Florida Street #4 Dorchester MA 02124 lucine@bu.edu (617) 282-9315 Tami Gouveia-Vigeant Lowell Center for Sustainable Production One University avenue Lowell MA 01854 tami_gouveia@uml.edu (978) 934-2997 Gary Grant Executive Director Concerned Citizens of Tillery PO Box 61 Tillery NC 27887 Tillery@aol.com (252) 826-3017 (252) 826-3244 fax Adnan Hammad Arab Comm Ctr for Economic and Social Services 6450 Maple Road Dearborn MI 48126 ahammad@accesscommunity.org (313) 216-2225 (313) 584-3622 fax Jessica Henry Southeast Community Research Center 2299 Hosea L. Williams Drive Atlanta GA 30317 J.Henry@CBPR.org (404) 373-6688 (404) 373-9080 fax

54

Madeleine Kangsen-Scammell Boston University SPH 715 Albany Street T2E Boston MA 02118 mls@bu.edu (617) 638-4454 Karen Kelley CB# 7506 University of North Carolina CH Chapel Hill NC 27599-7506 kelleyK@email.unc.edu (919)843-1479 (919)966-7955 fax Niem Kret Southeast Asian Bilinguel Advocates Inc PO Box 1684 Lowell MA 01853nkret@cmaalowell.org (978) 654-7374 (978) 654-7378 fax Sheldon Krimsky Dept of Urban and Environmental Policy Tufts University Medford MA 02155 (617) 627-3394 Sheldon.Krimsky@tufts.edu Lori Lambert PO Box 117 Salish Kootenai College Pablo Montana 5985-527 lori_lambert_@skc.edu (406) 275-4742 (406) 275-4808 fax William Lambert Center for Research on Occupational & Environ Toxicology Oregon Health & Science University 3181 SW Sam Jackson Park Rd L606 Portland OR 97239 lambertw@ohsu.edu (503)494-9488 (503)494-4278 fax

Sokny Long Center for Fam Work & Comm 600 Suffolk Street Lowell MA 01854 Sokny_Long@student.uml.edu (978) 934-4676 (978) 934-3026 fax Cynthia Lopez Epidemiologist , Dept of Health & Clinical Science O'Leary Library R, 500D University of Mass. - Lowell 671 Wilder Street Lowell MA 01854 Cynthia_Lopez@uml.edu Doreen Lwanga Refugee Women's Network Youth Group 683 Grant St. SE Atlanta GA 30315 (404) 622-2300 Michael A. Lythcott Brownfields, Superfund & Black Land Loss Committee, NBEJN 6 Julian Way Marlboro NJ 07746-1615 adeyemi@world.oberlin.edu (732) 617-2076 (732) 617-2071 fax Rachelle Mann-Gaytan 9140 Pioneer Ct. Suite E OHSU/OCDC Wilsonville OR 97070 rachelle.mann-gaytan@ocdc.net (503) 570-1110 ex 290 (503) 570-6128 fax Catherine Mansell Box 1943 Brown University Providence RI 02906 Catherine_Mansell@Brown.edu (401)726-0662

55

June Martin Alaska Community Action on Toxics 7750 Mayfair Drive #1 Anchorage AK 99502 june@akaction.net (907) 222-7714 (907) 222-7715 fax Debra Matthews PO Box 2485 Alton Park-Piney Woods Neigh. Improvement Corp. Chattanooga TN 37409 debapp@vol.com (423) 266-2751 (423) 265-3347 fax Donald Mattison NICHD/NIH 6100 Executive Blvd. Rm 4B05 Bethesda MD 20892-7510 mattisod@mail.nih.gov (301) 451-3823 (301) 480-7773 fax Brian Mayer PO Box 1916 Brown University Providence RI 02912 Brian_Mayer@brown.edu (401) 863-3459 Kimberely McCoy-Daniels Center for Bioethics Drew Hall, Room 106 Tuskegee University Tuskegee AL 26388 kdaniels11@aol.com (334) 750-0081 (334) 727-7221 fax Victoria McLaughlin-Diaz West Side Community Project 327 Niagara Street Buffalo NY 14201 WM22@buffalo.edu (716)-849-6751 (716) 849-6752 fax

Brian McWhirter West Side Community Project 327 Niagara Street Buffalo NY 14201 WM22@buffalo.edu (716) 849-6751 (716) 849-6752 fax Gretel S. Munroe Grass Roots Actions for Peace 9 Leyden Avenue Medford MA 02155 zgmunroe@rcn.com (781) 391-7578 fax - same - advance notice Brian Myles 83 Francis Street Brookline MA 02446 bmyles860@aol.com (617) 232-2018 (617 )232-8212 fax Robin Najar Southeast Research Community Center 2299 Hosea L. Williams Dr. Atlanta GA 30317 r.najar@CBPR.org (404) 373-6688 (404) 373-9080 fax Laura Norton Onkwatakari'tantshera Health & Spec Serv c/o PO Box 1440 Kahnawake, Qc. J0L 1B0 Canada (450) 635-2167 Kike Ojo Women's Health in Women's Hands 1637 Bristol Rd. W Mississauga Ontario L5M 4B7 Canada Kike_ojo@hotmail.com (905) 453- 9220 x327 (905) 457-8015 fax

56

Marla Pardilla Native Research Network Inc 4700 El Alamo Court SE Rio Rancho NM 88124 MPardilla@aol.com (505) 272-9847 (505) 272-2824 fax Phuong Phan Lowell Community Health Center 15-17 Warren Street 2nd fl Lowell MA 01852 phuongph@lchealth.org (978) 746-7827 (978) 453-8043 fax Sarina Piya IDCE 10 Hawthorne Street Clark University Worcester MA 01610 spiya@clark.edu (508)755-4265 Harrison Platero PO Box 3112 Community Health Representative To'Hajiilee NM 87026 haplate@quixnet.net (505)507-9959 Swati Prakash West Harlem Environmental Action 271 West 125th Street Suite 303 New York NY 10027 swati@weact.org Aqiel Qadir Toxic Waste/Lupus Coalition 25 High St Buffalo NY 14203 aqiel@aol.com (716) 578 2680 (716) 837-9175fax

Dianne Quigley Dept of Religion 501 Hall of Languages Syracuse University Syracuse NY 13244 dquigle@mailbox.syr.edu (315)443-3861 (315)443-3958 fax Elizabeth Ranslow Dept of Psychology University of Maine at Orono 5742 Little Hall Orono ME 04469 elizabeth.ranslow@umit.maine.edu (207) 581-2063 Paulette Renault-Caragianes LCHE 15-17 Warren Street Lowell MA 01850 paulettere@lchealth.org (978) 746-7848 (978) 452-2143 fax Kitty M. Richards Bernalillo County Environ. Health Dept. 111 Union Square, SE, Suite 300 Albuquerque NM 87102 krichards@bernco.gov (505) 314-0338 (505) 314-0470 fax James Rivera South Bronx Environmental Justice Partnership 541-549 E 138th Street Bronx NY 10454 jaime@southbronxcac.org (718)-742-5770 (718) 742-5772 fax Francine Romero Northwest Portland Area Indian Health Board 527 SW Hall Street Ste 300 Portland OR 97201 fromero@npaihb.org (503) 416 3286 (503 )228-8182 fax

57

Susan Rose, Executive Director Office for Protection of Research Subjects University of Southern California Stonier Hall (STO), Room 221 837 Downey Way Los Angeles CA 900989-4019 Susanro@usc.edu (213) 821-1154 Sarah Rosenberg International Development, Community Planning, and Environment (IDCE) 950 Main Street Worcester MA 01610-1477 SRosenberg@clarku.edu (508)799-7249 Amy Schulz Dept of Health Behavior and Health Education University of Michigan ajschulz@umich.edu (723)647-0221 Marta Segura MPH 4059 W 59th Place Los Angeles CA 90043 soysegura@earthlink.net Peggy Shepard West Harlem Environmental Action 271 West 125th Street Suite 303 New York NY 10027 peggy@weact.org (212) 961-1000 (212) 961-1015 fax Nancy Shore UW-SSW 4101 15th Avenue NE Seattle WA 98105 nshore@u.washington.edu (206) 383-7226 (206) 543-1228 fax Linda Silka Center for Family Work & Community 1 University Avenue U Mass Lowell Lowell MA 01854 Linda_Silka@uml.edu (978) 934-4675

George M Sirait 158 Mammoth Road Lowell MA 01854 gemas10@yahoo.com (978) 452-4812 Leslie Sky Onkwatakaritantshera Health & Soc Serv c/o PO Box 1440 Kahnawake Qc. J0L 1B0 Canada

Stephen Sodeke National Center for Bioethics in Research & Health Care Drew Hall, Room 106 Tuskegee University Tuskegee AL 26088 sodeke@tusk.edu (334)724-4870 Shobha Srinivasan PO Box 12233 (EC-21) Research Triangle Park NC 27709-2233 sriniva2@niehs.nih.gov (919) 541-2506 (919) 361-4606 fax Hal Strelnick South Bronx Environmental Justice Partnership Montefiore Medical Center The University Hospital for the Albert Einstein College of Medicine Dept of Family Medicine 3544 Jerome Ave Bronx NY 10467 hstrelni@montefiore.org (718)920-4678 Jodi Sugarman-Brozan Alternatives for Community and Environment Roxbury MA jodi@ace.ej.org Mansoureh Tajik 413 West Patterson Place Chapel Hill NC 2716 mansoureh_tajik@yahoo.com

(978) 934-3026 fax

58

Doug Taylor Southeast Community Research Center 2299 Hosea L. Williams Dr. Atlanta GA 30317 D.Taylor@CBPR.org (404) 373-8833 (404) 373-9080 fax Robin Toof Ctr for Family, Work & Comm 600 Suffolk Street Lowell MA 01854 Robin_Toof@uml.edu (978) 934-4677 (978) 934-3026 fax Juan J. Torress West Side Community Project 327 Niagara Street Buffalo NY 14201 jjtorres@buffalo.edu (716)849-6751 Connie Tucker PO Box 10518 Southern Organizing Committee for Economic & Social Justice Atlanta GA 30310 socejp@igc.org (404) 755-2855 (404) 755-0575 fax David Turcotte Center for Family Work & Community 600 Suffolk Street 1st floor S U Mass - Lowell Lowell MA 01854 David_Turcotte@uml.edu (978) 934-4682 (978) 934-3026 fax Godfrey Uzochukwu Director Waste Management Institute North Carolina Agricultural & Tech. State University 1601 E Market Street Greensboro NC 27411 uzo@ncat.edu (336) 334-7030 (336) 334-7399 fax

Carole Walker Onkwatakaritantshera Health & Soc Serv c/o PO Box 1440 Kahnawake Qc. J0L 1B0 Canada kscs@axess.com (450) 632-6880 Ernest Wallwork Dept. of Religion Room 501 Hall of Languages Syracuse University Syracuse NY 13244 eewallwork@aol.com (315)443-3861 (315)443-3958 fax Chris Walsh Yakima Indian Health Clinic PO Box 424 Toppenish WA 98948 cwalsh@yak.Portland.ihs.gov (509) 865-2102 x208 Dr. Rueben C. Warren CDC 1600 Clifton Rd. NE Mailstop E28 Atlanta GA 30333 rcw4@cdc.gov (404) 498-0111 (404) 498-0456 fax Ross Westcott Southeast Community Research Center 2299 Hosea L. Williams Drive Atlanta GA 30317 R.westcott@CBPR.org (404)373-6688 (404)373-9080 fax Susan Hale Whitmore National Association of CHC's/Health Corps 7200 Wisconsin Ste 210 Bethesda MD 20814 swhitmore@nachc.com (301 )347-0456 (301)347-0459 fax

Patricia Widener Sociology Dept, Box 1916 Brown University Providence RI 02909 patricia_widener@brown.edu (401)331-9632 Omega Wilson West End Revitalization Association PO Box 661 Mebane NC 27302 wera1usa@netscape.net (919) 563-6099 (919) 563-8857 fax Steven Wing CB#7400 McGavran-Greenbert Dept of Epidemiology, Univ. of North Carolina Chapel Hill NC 27599-7400 steven_wing@unc.edu (919) 966-7416 (919) 966-2989 fax Ami Zota 55 Park Drive Apt 8 Boston MA 02215 azota@hsph.harvard.edu (617) 512-6045 Jean Zotter The Medical Foundation Boston Urban Asthma Coalition 622 Washington St 2nd Floor Dorchester MA 02124 jzotter@tmfnet.org (617) 279-2277 (617) 282-3958 fax

59