Teaching Research Ethics for Community-based Participatory
Research
Dianne Quigley, Principal Investigator, Research Ethics and Environmental Health,
Syracuse University, NY
Abstract
This paper will offer a participatory approach to the teaching of research ethics for
community-based participatory research (CBPR) to undergraduate/graduate students,
with an emphasis on research ethics with culturally-diverse communities. This course is
specifically concerned with promoting the “community” as a collective subject in
research investigations, along with our current emphasis on individual human subjects.
This presenter has been teaching a course on “Community and Environmental Health
Research Ethics” for research with community populations (including AfricanAmericans, Southeast Asian Immigrants/Refugees, and Native Americans) for several
years at Brown University, RI. She raised funds for course development and
implementation on “Research Ethics” at five US universities in a National Institute of
Health-funded project; The Collaborative Initiative for Research Ethics and
Environmental Health (CIREEH)”. The session will focus on the need to train
researchers on understanding collective risks/benefits from community research, to
encourage research ethics training with curriculum designs, teaching methods/materials
and participatory teaching approaches for teaching new topics of the community as a
collective subject in research. For example, guidance will be provided on curriculum
topics, i.e. informed consent considerations with the collective community, communal
ethical theories to promote this, community-based research approaches to improve
research ethics with communities, building cultural competence through case studies of
culturally-diverse communities, the definition and representation of community collective
subject and respecting and integrating multiple knowledge systems in research. Through
this project, the collaborators have compiled an extensive list of course readings, case
studies, and literature needed for a deeper understanding of community research
protections. We can report on students’ experience with research ethics, effective
teaching approaches and how students were impacted positively by these courses.
I. Background
CIREEH was begun in 2000 with a multiyear grant from the National Institute of Health
to develop university courses, curriculum materials, articles and case studies and to
conduct national speaking engagements on research ethics in the conduct of community
health research to increase community research protections. The project’s health research
collaborators have specific expertise with ethical considerations in academic community
health research for Native American, African-American, Southeast Asian, Latino, and
other underserved communities. The project collaborators have worked on the problems
of environmental justice with various culturally-diverse communities for over a decade.
II. Why Teach Research Ethics for Community-based Participatory Research?
In our work with culturally-diverse communities, community health leaders have
reported on a number of research harms discussed below, from mainstream academic
researchers in their local communities. These harms speak to the importance of
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developing training materials and short courses for researchers and community leaders to
improve community research ethics and to increase community research protections.
Specifically, these harms speak to the need to protect the community as collective
research subject.
Community stigmatization: Examples of this include publications whereby researchers
named the study community with their adverse conditions; i.e. alcoholism, types of
cancers, hantavirus, etc. which affected insurance and quality of life ratings.
Communities were often unaware of their names being published in studies nor were they
aware of the risks of the community name being published.
Complaints of Exploitation of the Community by Researchers: Minkler (2001) and
Maddocks ( 1992) describe research investigations that have produced burdens to the
community, such as interview time, local resources, transportation, etc. when the
community is already overburdened by social, health and economic stresses and
community members are not compensated for these burdens. Quite often, the research
investigation again is something that has no value to the community but is of scientific
interest to the researchers. Communities often use the tern “parachute” research where
the researchers come in and do their study and leave without any accountability to the
community or disclosure of research results. As such, research designs and methods that
are limited to the research teams’ interest and cannot allow for emergent needs of the
community can be exploitive. Additionally, when community members experience this
type of researcher exploitation, they become less likely to be participants of research
studies; affecting the future recruitment of study subjects.
Inadequate Informed Consent Processes: There have been complaints of inadequacies in
informed consent processes whereby communities are not trained on risks/benefits of a
research intervention and lack comprehension of the intervention. There are reports that
community members do not adequately understand “voluntariness” and can feel coerced
by or submissive to researchers (Silka 2001). With culturally-diverse communities,
unintended social or cultural harms (treatments of tissue samples, violations of cultural
practices, overriding communal norms ) result from researchers neglect of communal
contexts and norms. A lack of community consent procedures for research dissemination,
publication, or uses of community tissue samples, archives of local knowledge or other
community data can lead to misuses of data that may compromise confidentiality or
misappropriate community data or knowledge (Foster 1999, Quigley 2006).
Technical Inaccuracies: Research designs sometimes may exclude community
contextual knowledge; the observations, the local knowledge and experiences reported by
community members. This can lead to inadequate information about diet, lifestyle and
other exposure scenario information, particularly for cross-cultural communities who
have different subsistence patterns (Frohmberg 1999). Also, the community often can
identify important data sources and information as a collaborator in research , these data
sources may become overlooked without the community’s participation.
These types of problems and burdens to community require us to provide more training to
both academic researchers and community members. They alert us to the need for
assisting researchers to develop more research protections for communities as a subject in
research and to encourage improved participatory administrative arrangements between
the community and researchers to ensure fairness, equity, authority and a deeper
understanding of cross-cultural differences and otherness .
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III. Overall Goals and Objectives of Course Development and Training
The purpose of this course development and training in five universities is to sensitize
young researchers and students to community-centered research approaches that will
improve our understanding of the community as a collective subject in research . We
offer a new participatory research ethics course based on new community-centered
research strategies that will involve community members as partners/collaborators in
research. We teach selected ethical theories that assist with community-centered research
strategies; we analyze new case studies in the field of community-based research as
practiced in United States. These faculty present new texts and case studies for working
with culturally-diverse and underserved communities in the US for promoting culturallyappropriate research partnerships and research protections.
a. Course Development and Implementation: The project collaborators are grateful to
the National Institute of Health, ((National Heart, Lung and Blood Institute Grant Program
T15HL069792) for allowing them to provide this research ethics training through their
award from the grant program “Short Courses for Research Ethics”. Teaching faculty
who conduct research received 3 years of funding for developing and implementing new
courses in their departments on research ethics, both semester-long courses or special
topic courses. These faculty then teach this course on an ongoing basis after the grant
funding has terminated. Additionally the principal investigator was able to offer a new
course as a Visiting Instructor to Brown University for two years through NIH funding
and now Brown will retain this course through their own funding.
b. Course Recruitment: Course recruitment for the teaching of this course in five
universities and on-line was carried out through list-serve emails and flyers in academic
departments where students are enrolled for community-related research careers. Faculty
primarily recruited students in public health, environmental health, housing and
sociological research. Students from law, international studies, and other communityrelated fields also attended courses. Several faculty concentrated their research ethics
training primarily for students in health and biomedical-related areas. On-line course
recruitment was conducted at UMASS-Lowell for students and researchers from all over
the country as practitioners of community-based research or as research faculty.
c. Course Materials: In the area of course materials, the project team specifically needed
to create many more materials for the teaching emphases of community-centered research
ethics as there were no existing textbooks at the time on the full scope of the problem.
Since 1999, we have seen several new textbooks being published on case studies and
discussions of community-based research. This list of books is appended and include case
reports of these new community-academic research partnerships, for research primarily in
communities of color in the US. Our project relies on these texts and case studies from
the field, along with standard ethical guidelines for health research and texts on ethical
theories, environmental justice and community development (A sample of these are
appended).
Since the project’s inception, we have collected annotated bibliographies, which can be
viewed on the website we developed, www.researchethics.org. These bibliographies
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contain case studies in the fields on environmental health and justice, community
research ethics, new studies in community-based research in environment, housing and
health research. We also have developed annotated bibliographies on research ethics with
cultural groups: African-Americans, Southeast Asians, Native Americans, Hispanic
populations. Our project team was very much needing to develop more research
materials for dealing with environmental health research problems. A number of
communities have complained about inadequate research methods and research abuses in
their communities as they sought to deal with community impacts from environmental
contamination. The faculty wrote up new case studies which reported on ethical
considerations in the conduct of health research in Native American, Southeast Asian,
Chinese and African-American communities (A list of “Case Studies/Articles” from
www.researchethics.org is appended). One case study example discusses a communitybased survey of environmental justice/health harms from hog wastes in North Carolina
and how the local African-American communities worked in collaboration with scientists
at University of North Carolina. The case study describes successful participatory
research arrangements in the design, conduct and impacts of the study. Another case
study highlighted how the use of “ritual”( A River Festival) with Southeast Asian
refugees and other ethnic groups offered a model of a culturally-appropriate method for
health and environmental research promotion/education.
Another emphasis for course materials is the incorporation of texts on ethical theories.
Students should be familiar with a number of ethical frameworks for ethical decisionmaking in community research ethics. Students were given textbooks on biomedical
ethics to learn about primarily the experience of principle ethics with individual human
subjects research. They are given research ethics guidelines used by federal agencies and
academic Institutional Review Boards, “The Belmont Report” and “The Council of
International Organizations in Medicine”. Along with excerpts from existing textbooks,
students are given more readings on communal ethical frameworks to learn how to build
communal ethical understandings for knowledge production, health promotion and
community development. These include Virtue Ethics, Communitarian Ethics,
Postmodern Ethics and Ethics of Care (see sample list of texts appended).
d. Course Teaching Methods All these course use a participatory learning approach to
course implementation. We seek to improve the students understanding of new research
methods that are participatory in practice but are still guided by methods for technical
accuracy and quantification, however we are very interested in developing qualitative
approaches for increasing a community-based research approach. Throughout the course,
students are asked to review case study material on research ethics and community-based
research and present this in class discussions. The professors offer short lectures on both
theoretical and practical considerations in research ethics from field experience and
scholarly analyses. As the professors have all worked in the field of environmental justice
and CBPR, they bring their personal experiences from the field to the students,
particularly for complex and difficult problem areas as well as for new innovative
arrangements in CBPR and their applications. Community health leaders are invited to
speak for certain classes of the course; providing their perspectives on research ethics
(ethics attitudes) and community research from the view of community members.
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Community speakers seek to reduce “expert intimidation” and lack of communal respect.
The project team strives to incorporate stories from the field from the experience of
community members as well as academic reflections and analysis of research ethics
issues. Topical areas and approaches to the teaching of research ethics varies from
professor to professor. Below is a sample of one research ethics course.
Sample Course Description
“Community and Environmental Health Research Ethics” (Brown University – ES
170) stresses these curriculum topics over ten classes for a semester-long course:
Class One/Two - Overview of Principle Ethics for Health Research( Teaching major principles of the common morality in research, reviewing ethical codes for human
subjects research in the US, discussing theory/practice of informed consent for individual subjects and the
need to develop these for the collective group)
Class Three - Dealing with the Community as a Collective Research Subject
(What are ways we can increase research protections for the collective, determining collective
risks/benefits of research interventions, increasing a collective comprehension of research, ensuring
participation, equitable decision-making, and data protections for the collective.)
Class Four - Community-based Participatory Research(CBPR) – A New Paradigm
(Theory and definitions of CBPR, overviews of case studies and lessons from the field, struggles with the
acceptance of CBPR by traditional researchers.)
Class Five - Selected Ethical Theories to Promote the Community as Research Subject
(Virtue and communitarian theories, postmodernism, ethics of care, cross-cultural ethical understandings)
Class Six - Conceptualizing and Representing the Community
(How do we conceptualize and represent “the collective” for community research protections and consent
for research, building community advisory boards or community research committees?)
Class Seven - Cultural Competence Training
(Review of new research for building the researcher skills for working with cross-cultural groups,
improving culturally-appropriate informed consent, cross-cultural engagement, discourse needs...)
Class Eight - Special Topics in Cultural Diversity and Community Research :
Research Ethics and African-American Communities, Southeast Asian Communities, Native American
Communities, Hispanic Communities (How are these communities assisted and harmed by mainstream
research, what are new methods for improving culturally-appropriate research – building stronger
participation by cultural groups, learning cultural protocols for engaging their communities, forms of
cultural decision-making, understanding of knowledge values/production,?)
Class Nine - Multiple Knowledge Systems; Developing Bicultural Research Designs
(How can we accomodate different knowledge systems and values in community-based participatory
research, recruiting community liasions, using community focus groups, new outreach methods?)
Class Ten - Students Presentations and Course Evaluations
Each class includes student presentations of selected texts, case reviews and other course
reading materials assigned for each class. These presentations are supplemented by the
professor’s lecture for the most important learning emphases of the materials. Class
discussion is part of each class. At times, a member of a cross-cultural community may
offer a story of research from their community for certain classes. Students are
encouraged to develop a research project with the community and they will use their
community research activities as part of the course training. Students report their
experiences from the field and often write a class paper from this experience. Students
can be graded on class presentations, class participation and class papers. In the above
course, students are required throughout the course to analyze how case studies reflect
certain ethical theoretical approaches so that they gain a deeper understanding of the
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theories and their practical applications. They are required to write a reflection of the
materials for each class, to present selected readings to the class and to write a 25-page
paper for their class grade.
The faculty teaching these course provide qualitative reflections of the student’s skills
acquisitions and the students overall review/critique of the course. We can provide
quantitative measures of competencies if needed but stringent written measures of
competencies are not required in these academic departments. These are assumed to be
reflected in the student’s grade. Student papers and presentations provide faculty
assessments of competencies. Class size to date has been small (6-13 students per course)
as the need for participatory research ethics training is often not a traditional emphasis of
training in disciplines that will conduct community research. Students report that certain
technical and methodological areas are stressed as part of their training but not research
ethics. After several years of teaching these research ethics courses, we find that both
students and professors recognize that the curriculum topics of the course bring new
understandings to their methodological approaches to community research and an
important awareness of the problems/risks of dealing with the community as a collective
in research .
e. Course Impacts/Outcomes: Overall, this course meets an important need for students
to gain training in research ethics that deals directly with their practice of research in the
community. Students often report that they are exposed to very little ethical training in
their disciplines and that this course assists them in increasing their sensitivity to
community needs, particularly with cross-cultural communities. The most important
impact of this course has been the students recognizing a need to incorporate CBPR
methods in their research approaches. In course evaluations, students have highlighted
these curriculum areas as most relevant to their research training:
(1) case studies and articles that demonstrate methods and processes for bringing
together community representatives (representing the collective) to consult and approve
research design, methods, interpretation and dissemination;
(2) the readings and discussions of communal ethical approaches. For example, students
stressed the importance of compassion, listening, empathy, patience and how these virtue
practices can be applied in specific underserved communities. They appreciated the
encouragement of community stories and narratives from postmodernism/virtue theory as
an important part of the research process. Building core values in the community for
health and environmental protection was seen as an important process. Students learned
from case histories that illustrate methods for working with cultural and subcultural
diversities: different values, world views and discourse needs. These strategies are critical
for dealing with issues of power and privilege in the research process.
(3) incorporating recommendations from readings on cultural groups which were written
to assist researchers with increasing cultural awareness, cultural sensitivity and sharing
power. Case studies that offer bicultural research designs were particularly helpful.
(4) recognizing the need to not burden the community with their personal research
interests without offering resources and benefits to the community in the research
process. They become more sensitive to the need to share findings and data interpretation
with the community to avoid stigmatization and forms of community exploitation.
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IV. References:
Foster, MW; Bernstein, D; Carter, TH; “A model agreement for genetic research in
socially identifiable populations.” American Journal of Human Genetics. Sep. 63
(3) : 696-702, Sep, 1998
Frohmberg, E; Goble, R; Sanchez, V; Quigley, DP; “The Assessment of Radiation
Exposures to Native Communities from Nuclear Weapons Testing in Nevada”,
Society for Risk Analysis, March 2000
Maddocks, Ian “Ethics in Aboriginal Research: A model for minorities or for all?”, The
Medical Journal of Australia, v. 157, October 19, 1992
Minkler, Meredith and Nina Wallerstein, 2003, Community-based Participatory
Research for Health, Josie Bass Press, San Francisco
Quigley, Dianne 2006, “A Review of Ethical Improvements to Environmental/Public
Health Research: Case Examples from Native Communities”, Journal of Health
Education, MI, April
Silka, Linda 2001. “Rituals and Research Ethics”. Report to the Collaborative Initiative
for Research Ethics and Environmental Health
Resources:
New Textbooks:
Brugge, Doug and Patricia Hynes, 2005. Community Research in Environmental Health,
Studies in Science, Advocacy and Ethics, Ashgate, VT., USA
Minkler, Meredith and Nina Wallerstein, 2003,Community-based Participatory Research
for Health, Josie Bass Press, San Francisco
Blumenthal, D., DiCLemente, R. 2003. Community-based Health Research: Issues and
Methods, Springer Publishers
Strand, K, N. Cutforth,R. Stoeker, S.Marullo, P. Donohue, 2003. Community-based
Participatory Research and Higher Education, San Francisco, Jossey-Bass
CIREEH Case Studies/Articles
Research Ethics and Diverse Communities
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
"Social responsibility and research ethics in community driven studies of industrialized
hog production in North Carolina", Steve Wing, University of North Carolina (2000)
"Compilation on Environmental Health Research Ethics Issues with Native Communities",
Dianne Quigley, Syracuse University (2001) A revision of this article, “A Review of Improved
Ethical Practices for Environmental/Public Health, Case Examples from Native Communities” has
been published in Health Education and Behavior, Vol. 33, Number 2, April 2006” "



Rituals and Research Ethics: Using One Community’s Experience to Reconsider the
Ways that Communities and Researchers Build Sustainable Partnerships", Linda Silka,
UMASS Lowell (2001)
"Exploring Community-Based Research Ethics Case Study: Healthy Public Housing
Initiative", Doug Brugge and Alison Kole, Tufts University (2001)
"Protecting the Navajo People Through Tribal Regulation of Research", Doug Brugge and
Mariam Missaghian (2003)
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
"Slide Presentation of Communal Ethical Frameworks for Environmental/Community
Health Studies", Dianne Quigley, Syracuse University (2005)
Ethical Reviews of "Research Ethics and Diverse Communities"




"Research ethics from the cultural anthropologist's point of view", Ann Grodzins Gold,
Syracuse University (2001)
"Ethical Analysis of Group and Community Rights: Case Study Review of the
"Collaborative Initiative for Research Ethics in Environmental Health."", Ernest Wallwork,
Syracuse University (2002)
"Response to "Compilation of Environmental Health Research Ethics Issues with Native
Communities"", Sheldon Krimsky, Tufts University (2001)
"Ethical Review of "Social responsibility and research ethics in community driven studies
of industialized hog production in North Carolina"", Sheldon Krimsky, Tufts University
(2001)
Ethical Issues in Environmental Health Research





"Environmental Justice, Science, and Public Health", Steve Wing, University of North
Carolina (2005)
"Qualitative Methods in Environmental Health Research", Phil Brown, Brown University
(2003)
"Objectivity and Ethics in Environmental Health Science", Steve Wing, University of North
Carolina (2003)
"Response to Phil Brown's Paper : Qualitative Methods in Environmental Health
Research", Sheldon Krimsky, Tufts University (2003)
"Ethical Considerations in Research Methodologies for Exposure Assessment of Toxic
and Radioactive Contaminants in Native Communities", Dianne Quigley, Syracuse
University (2001)
Understanding Complexities of "Community" for Community Research Ethics


"Who is the Community?/What is the Community?", Phil Brown, Brown University (2005)
"Conceptualizing Community: Anthropological Reflections", Ann Grodzins Gold (2005)
Ethics and Cross-Cultural Knowledge and Values
Carol, please add to the top of this list, “Traditional Ecological Knowledge/Indigenous Science
and Communal Research Ethics”, Slide presentation – Dianne Quigley, 2005



"Environment / ritual / research ethics: Crisscrossing issues in anthropology and religious
studies", Ann Grodzins Gold, Syracuse University (2002)
"Ethical Issues in Medical anthropology: different knowledge, same bodies", Ann
Grodzins Gold, Syracuse University (2003)
"Combining Ancient (Indigenous) Knowledge Systems with Western Science to Improve
US Scientific Research Practices: Understanding the Moral/Spiritual Dimensions of
Matter", Dianne Quigley, Syracuse University (2002)
Selected Texts for Ethical Theories and The Role of Community
Beauchamp, T. and Childress, J. 2001, Principles of Biomedical Ethics, Oxford
University Press, Oxford, U.K.
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Bellah, Robert, Richard Madson, William Sullivan, Ann Swidler, Steven Tipton, 1986
Habits of the Heart, Harper and Row, New York
Cajete, Gregory 2000, Native Science, Clear Light Publishers, Santa Fe, NM
Council for International Organizations of Medical Sciences. (1993).International ethical
guidelines for biomedical research involving human subjects. Geneva
Critchley, S. and Dew, P. Deconstructive Subjectivities, State University of New York
1996
Etzione, A., The New Golden Rule. Basic Books (Harper Collins), NY 1996
Faden, R. and Beauchamp, T, A History and Theory of Informed Consent, Oxford
University Press, 1986
Fergusson, D. Community, Liberalism and Christian Ethics, Cambridge University Press,
1998
Khatchadourian, Haig, Community and Communitarianism, Peter Lang, New York, 1999
Levinas, Emmanuel, Totality and Infinity. Oxford University Press 1988
MacIntyre, Alasdair, After Virtue, Duckworth, London, 1984
Martinez-Brawley, Emilia, 1990. “Perspectives on the Small Community”, National
Association of Social Workers Press, Maryland
Meara, Naomi, Lyle Schmidt, Jeanne Day, 1996. “Principles and Virtues: Foundation for
Ethical Decisions, Policies and Character”, The Counseling Psychologist, Vol. 24,
No.1, pp:4-77. January
National Commission for the Protection of Human Subjects of Biomedical and
Behavioral Research (1979). The Belmont Report. Ethical Principles and
Guidelines for the Protection of Human Subjects of Research
Peat, David, 1994. Lighting the Seventh Fire Birch Lane Press, NJ
Scherer, Jacqueline 1972. Contemporary Community, Tavistock Press, London, UK
Tinder, Glenn 1980. Community – Reflections on a Tragic Ideal, Louisiana State
University Press
Wallwork, Ernest 1972, Durkheim, Morality and Milieu, Harvard University Press,
Cambridge, MA
Woodruff, Paul 2001. Reverence, Renewing a Forgotten Virtue, Oxford University Press,
New York
Wyschongrod, Edith, Saints and Post-Modernism, University of Chicago Press 1990
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