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.
I. Conference Background and Sponsorship
1
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
described successful strategies in community collaborative participation that have been developed
2
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 capacitybuilding, 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 onehalf 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 AfricanAmerican 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
fax to (919) 563-8857. Thank you for your reply. Omega R. Wilson
wera1usa@netscape.net or
_________________________________________________________
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 wellconstructed 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 postaccident 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 sociodemographic 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 cochair 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 decisionmaking? 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; politicallyorganized 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 nonnegotiable 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”, JosseyBass 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 materiallyoriented. 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
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
development@tirn.org
chiomaadaku@yahoo.com
(865) 637-1576
(865) 522-7476 fax
Felipe Branford
West Side Community Project
327 Niagara Street
Buffalo NY 14201
WM22@buffalo.edu
(716) 849-6751
(716) 849-6752 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
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
Judith Anderson
Toxic Waste/Lupus Coalition
25 High Street
Buffalo NY 14203
judie851@aol.com
(716) 835-7161
(716) 655-2245
Julia Brody Executive Director
Silent Spring Institute
29 Crafts Street
Newton MA 02458
brody@silentspring.org
(617) 332- 4288
(617) 332 -4284 fax
Galant Au
Harvard Medical School
164 Longwood Avenue 2nd Floor
Boston MA 02115
galant_au@hmsharvard.edu
(617) 432-3020
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
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
51
Greg Brown
25 High Street
Toxic Waste/Lupus Coalition
Buffalo NY 14203
npp-serc@pcom.net
(716) 884-0815
(716) 884-0160 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
Phil Brown
Dept of Sociology
PO Box 1916
Brown University
Providence RI 02912
Phil_Brown@brown.edu
Dawn David
ATFE
PO Box 992
Hogansburg NY 13655
mfadden@westelcom.com
(518) 358-9607
Tamyra S. Carroll
Southeastern Community Research Center
4212 Wynfield Drive
Baltimore MD 21117
tbird2000spel@hotmail.com
(404) 290-4495
Linda Deer
Onkwatakaritantshera Health & Soc.Services
c/o PO Box 1440
Kahnawake, Qc. J0L 1B0
Canada
(450) 632-5499
Manuel Castro
Make the Road by Walking
301 Grove Street
Brooklyn NY 11237
manuel@maketheroad.org
(718) 418-7690 x225
(718) 418-9635 fax
Treena Delormier
Onkwatakaritantshera Health & Soc Serv
c/o PO Box 1440
Kahnawake, Qc. J0L 1B0
Canada
(514) 668-9832
Olivia Ceesay
St Lawrence University
Canton NY 13617
oceesay@stlawu.edu
(315)229-5222
Rebecca Dewey
Student - Public Health
92 Old Bridge Road
Concord MA 01742
(978)-369-8295
Khan Chao
Center for Fam Work & Comm
600 Suffolk Street
Lowell Ma 01854
Kham_Chao@uml.eldu
(978)934-4676
(978) 934-3026 fax
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
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
52
Brandon Early
7103 Meadow Circle
Riverdale GA 30349
earlyone504@aol.com
(404) 4 1-3792
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
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
Lucine Gordon
Boston University SPH
100 Florida Street #4
Dorchester MA 02124
lucine@bu.edu
(617) 282-9315
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
Tami Gouveia-Vigeant
Lowell Center for Sustainable Production
One University avenue
Lowell MA 01854
tami_gouveia@uml.edu
(978) 934-2997
Jennifer Farley
Student - IDCE
950 Main Street c/o IDCE
Worcester MA 01610
(708) 805-2781
Gary Grant Executive Director
Concerned Citizens of Tillery
PO Box 61
Tillery NC 27887
Tillery@aol.com
(252) 826-3017
(252) 826-3244 fax
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
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
Joyce Gibson
University of Mass at Lowell
16 Snow Terrace
Littleton MA 21460
joyce_gibson@uml.edu
(978)934-4618
(978)486-0260 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
53
Madeleine Kangsen-Scammell
Boston University SPH
715 Albany Street T2E
Boston MA 02118
mls@bu.edu
(617) 638-4454
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
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
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
Niem Kret
Southeast Asian Bilinguel Advocates Inc
PO Box 1684
Lowell MA 01853nkret@cmaalowell.org
(978) 654-7374
(978) 654-7378 fax
Doreen Lwanga
Refugee Women's Network Youth Group
683 Grant St. SE
Atlanta GA 30315
(404) 622-2300
Sheldon Krimsky
Dept of Urban and Environmental Policy
Tufts University
Medford MA 02155
(617) 627-3394
Sheldon.Krimsky@tufts.edu
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
Lori Lambert
PO Box 117
Salish Kootenai College
Pablo Montana 5985-527
lori_lambert_@skc.edu
(406) 275-4742
(406) 275-4808 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
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
Catherine Mansell
Box 1943
Brown University
Providence RI 02906
Catherine_Mansell@Brown.edu
(401)726-0662
54
June Martin
Alaska Community Action on Toxics
7750 Mayfair Drive #1
Anchorage AK 99502
june@akaction.net
(907) 222-7714
(907) 222-7715 fax
Brian McWhirter
West Side Community Project
327 Niagara Street
Buffalo NY 14201
WM22@buffalo.edu
(716) 849-6751
(716) 849-6752 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
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
Donald Mattison
NICHD/NIH
6100 Executive Blvd. Rm 4B05
Bethesda MD 20892-7510
mattisod@mail.nih.gov
(301) 451-3823
(301) 480-7773 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
Brian Mayer
PO Box 1916
Brown University
Providence RI 02912
Brian_Mayer@brown.edu
(401) 863-3459
Laura Norton
Onkwatakari'tantshera Health & Spec Serv
c/o PO Box 1440
Kahnawake, Qc. J0L 1B0
Canada
(450) 635-2167
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
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
Victoria McLaughlin-Diaz
West Side Community Project
327 Niagara Street
Buffalo NY 14201
WM22@buffalo.edu
(716)-849-6751
(716) 849-6752 fax
55
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
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
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
Elizabeth Ranslow
Dept of Psychology
University of Maine at Orono
5742 Little Hall
Orono ME 04469
elizabeth.ranslow@umit.maine.edu
(207) 581-2063
Sarina Piya
IDCE
10 Hawthorne Street
Clark University
Worcester MA 01610
spiya@clark.edu
(508)755-4265
Paulette Renault-Caragianes
LCHE
15-17 Warren Street
Lowell MA 01850
paulettere@lchealth.org
(978) 746-7848
(978) 452-2143 fax
Harrison Platero
PO Box 3112
Community Health Representative
To'Hajiilee NM 87026
haplate@quixnet.net
(505)507-9959
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
Swati Prakash
West Harlem Environmental Action
271 West 125th Street Suite 303
New York NY 10027
swati@weact.org
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
Aqiel Qadir
Toxic Waste/Lupus Coalition
25 High St
Buffalo NY 14203
aqiel@aol.com
(716) 578 2680
(716) 837-9175fax
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
56
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
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
Sarah Rosenberg
International Development, Community
Planning, and Environment (IDCE)
950 Main Street
Worcester MA 01610-1477
SRosenberg@clarku.edu
(508)799-7249
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
Amy Schulz
Dept of Health Behavior and Health Education
University of Michigan
ajschulz@umich.edu
(723)647-0221
Shobha Srinivasan
PO Box 12233 (EC-21)
Research Triangle Park NC 27709-2233
sriniva2@niehs.nih.gov
(919) 541-2506
(919) 361-4606 fax
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
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
Nancy Shore
UW-SSW
4101 15th Avenue NE
Seattle WA 98105
nshore@u.washington.edu
(206) 383-7226
(206) 543-1228 fax
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
Linda Silka
Center for Family Work & Community
1 University Avenue
U Mass Lowell
Lowell MA 01854
Linda_Silka@uml.edu
(978) 934-4675
(978) 934-3026 fax
57
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
Carole Walker
Onkwatakaritantshera Health & Soc Serv
c/o PO Box 1440
Kahnawake Qc. J0L 1B0
Canada
kscs@axess.com
(450) 632-6880
Robin Toof
Ctr for Family, Work & Comm
600 Suffolk Street
Lowell MA 01854
Robin_Toof@uml.edu
(978) 934-4677
(978) 934-3026 fax
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
Juan J. Torress
West Side Community Project
327 Niagara Street
Buffalo NY 14201
jjtorres@buffalo.edu
(716)849-6751
Chris Walsh
Yakima Indian Health Clinic
PO Box 424
Toppenish WA 98948
cwalsh@yak.Portland.ihs.gov
(509) 865-2102 x208
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
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
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
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
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
58
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