Teaching Research Ethics for Community-based Research …



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 African-Americans, 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 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 .

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 culturally-appropriate 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 community-related 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, . These bibliographies 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 is appended). One case study example discusses a community-based 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 decision-making 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. 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 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.

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

• "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)

• "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.

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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