Cultural Competence and Ethics: Community

Working with Communities: Cultural Competence and Ethics:
Fall 2010, ENVS 1700A
Adjunct Assistant Professor: Dianne Quigley, Center for Environmental Studies
Office: TBA
Office Hours:
Telephone: TBA
[email protected]
By appointment
Box: 1943
Course Description
New ethical research practices with community populations stress partnership and
participatory models with community members. Working in partnership and sharing
control over the research process can lead to significant new challenges in the scientific
practice of community/environmental health interventions and environmental research.
This course will explore how bio-medical research protections for individuals can be
extended to groups and communities by reviewing case studies in community-based,
participatory research and ethical theories of principle ethics, virtue ethics,
communitarian, deontology, ethics of care and post-modern ethics. A review of informed
consent theory and international case studies on informed consent with communities will
provide training to students on how these research ethics challenges are being addressed.
Moral complexities such as how do we build community representation for collaboration
and partnership and how to adapt and modify research methods to respond to community
needs in research will be analyzed. New community research protections are needed to
overcome group/collective risks of research. How do community-academic partnerships
deal with sharing the process of data collection; the control of data; the interpretation of
research findings, the dissemination of results and intellectual property rights? These
difficult issues are more complex when dealing with culturally-diverse groups. How can
cultural competence theories assist us in conducting community interventions? We will
review public health, environmental studies research approaches/designs that can engage
culturally-diverse communities with culturally-appropriate methods. The local lifestyle
contexts, knowledge values and ecologies of Native Americans, Southeast Asians,
African-Americans, and Hispanic populations will be explored in review articles and case
Learning Objectives
· To have an understanding of principle ethics in biomedical research as well as
perspectives in virtue ethics, communitarian, deontology, ethics of care and postmodern ethics. To have a solid orientation to informed consent theory and cases.
· To learn about community-based participatory research principles used in community
health and environmental research and for environmental justice needs; to discuss
and debate the value of these new approaches
· To gain an understanding on the need for community or group protections in research
and be aware of collective risks/benefits of research. Case studies of issues in
informed consent will be reviewed, particularly for international studies.
· To provide Institutional Review Board (IRB) application training.
· To review cultural competence theory, definitions and practices
· To become aware of culturally-appropriate research methods for specific ethnicallydiverse populations from literature sources and case examples.
To review and understand how different cultural knowledge traditions, values and
contexts can be accommodated, mediated and integrated in research partnerships with
culturally-diverse communities.
Course Structure and Methods
This course is proposed to run for twelve sessions for a 2.4 hour time period each session. In this
course, a seminar approach is used with readings in research ethics, ethical theories and with the
use of numerous case studies in the field. Guest presenters also will be invited. Students will be
required to actively participate in class discussions and case reviews.
Student Evaluation
Students will be graded on class participation, weekly written reflections of assigned readings and
student papers. Students will be required to complete either two short papers on the major topics
of the course or one 25–page paper on a specific challenging issue in community research ethics
that would offer new insights into this field.
Required Readings
Required reading consists of the books to be purchased and on-line at the WebCt MyCourse site.
Many of the class readings can be available in a course packet at Allegra Printing if students
would like this option.
Books available at Brown Bookstore:
(1) Beauchamp, T. and Childress, J. 2001, Principles of Biomedical Ethics, Oxford University
(2) Minkler, M. and Nina Wallerstein, Community-Based Participatory Research for
Health, Josey-Bass, San Francisco, CA 2003
Class Schedule:
Part One – Research Ethics and Community-based Participatory Research (CBPR) – Theory
and Practice
September 13 (please read these in preparation for Sept. class)
 Standard biomedical ethical principles for individual human research participants – How are
these important to community interventions?
Assigned Readings:
(1) Beauchamp, T. and Childress, J. 2009, Principles of Biomedical Ethics, Oxford University
Press, Part I (up to P. 25) Part II, Chapters 4: 99-135 P., Chap. 5: 149-155, Chap. 6: 197-206,
Chap. 7: 240-244.
September 20
 Informed Consent Theory, Guidelines and Informed Consent with Communities/Cultural
Class Handout/Lecture: Faden, R. and Beauchamp, T. 1986. A History and Theory of Informed
Consent, Oxford University Press: Chapter 7: The Concept of Autonomy
Assigned Reading: Choose three of these four readings.
.(1) Appelbaum, P. et al 2009. Voluntariness of Consent to Research. Hastings Center Report,
(2) Council for International Organizations of Medical Sciences. (1991) International Guidelines
for the Ethical Review of Epidemiological Studies; and skim (2002) International ethical
guidelines for biomedical research involving human subjects. Geneva
(3) The 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
(4) Matthew, Dayna. 2008. Race, Religion and Informed Consent. 36 J.L. Med and Ethics,
*Optional: Universal Declaration on Bioethics and Human Rights, UNESCO and WMA
Declaration of Helsinki, Ethical Principles for Medical Research Involving Human Subjects.
September 27
 Community-based participatory research (CBPR) arrangements and models of research
protections for communities engaged in research;
Assigned Readings
(1) Minkler, M. and Nina Wallerstein, Community-Based Participatory Research for
Health, Josey-Bass, San Francisco, CA 2003: Part One – Introduction to CBPR
(2) Focusing on Community-Based Research. Protecting Human Subjects, Number 9, Fall 2003,
Protecting Human Subjects Web site—
(3) Israel, Barbara, A Schulz, E Parker, A Becker. Review of Community-based Research:
Assessing Partnership Approaches to Improve Public Health. Annual Review of Public Health,
1998, 19:173-202
* Optional:
(4) Chen, Donna, Jones, L., Gelberg, L. Ethics of Clinical Research within a CommunityAcademic Partnered Participatory Framework. Ethnicity and Disease, v. 16, Winter 2006 (CES
(5) Quigley, Dianne. A Review of Ethical Improvements to Environmental/Public Health
Research: Case Examples from Native Communities; in Perspective, Health Education and
Behavior. University of Michigan Press, April 2006, v.33, #2
October 4
 A focus on ethical theories relevant to community research protections: principle and virtue
ethics, communitarianism, deontology, ethics of care and post-modern ethics.
Assigned Readings: Choose three of these five readings
(1) Wallwork, Ernest 2003. Ethical Analysis of Group and Community Rights. or Wallwork, E. 2008. Ethical Analysis of Research Partnerships.
Kennedy Institute of Ethics, v. 18,.i.1, March., (MyCourses weekly readings)
(2) Gold, Ann. 2001. Research Ethics from the Cultural Anthropologist’s Point of View.
(3) Beauchamp, T and J. Childress. Principles of Biomedical Ethics. Part 3, Chap 9
(4) Etzioni, A, 1996, The New Golden Rule, Basicbooks, NY, Chapter MyCourses
(5) MacIntyre, Alasdair 1981. After Virtue, London: Duckworth Chap: 14, Nature of
Virtues – MyCourse site
October 11 (Columbus Day – no class)
October 18
*** Short Essay Due – Assignment is on the MyCourses Page
Ethical challenges in community intervention/ research methodologies. This session and
its assigned readings cover three tracks for student presentations of specific case studies.
Please choose four case studies; they can be within one folder or among all three folders.
Assigned Readings:
Option A - a set of environmental and pubic health methodologies (epidemiology, disease
surveillance, risk assessments, exposure assessments); ethical aspects of exposure uncertainty and
requirements of statistical significance. (See MyCourse Folder – Public/Environmental Health)
Option B - a set of readings for students in international studies and clinical research, focusing
on research approaches, informed consent and community research review
(See MyCourse Folder – International Community Health Studies)
Option C - national and international community studies for environmental research/ecological
studies (See MyCourse Folder – Environmental/Ecological Studies).
See Appendix for Folder Studies
October 25
Defining and Representing Community in Community Research Investigations
 When researchers seek to conduct research in communities, complex issues can arise in
knowing who represents the community and how does the community define itself.
These case examples will help us to explore those complexities.
Assigned Readings: Choose three of these readings
(1) Brown, Phil. 2006.Who is the Community/What is the Community” (see – under Case Studies/Articles).
(2) Jewkes, Rachel and Murcott, Anne. Community Representatives: Representing the
Community. Social Science and Medicine v.46, #7, 1998
(3)MacQueen, Kathleen et al. What is Community? An Evidence-based Definition for
Participatory Public Health. American Journal of Public Health, Dec. 2001, v.91 #12
(4) Goodman, Robert et al. Identifying and Defining the Dimensions of Community Capacity to
Provide a Basis for Measurement. Health Education and Behavior, June 1998, v. 25(3)
(5) American Public Health Association: Public Health Code of Ethics
Part Two: Research Ethics with Culturally-Diverse Groups
November 1
**** Midterm Paper Due for those doing two papers – see assignment on MyCourses
Overview of the need to prepare for research with culturally-diverse groups, learning specific
contexts and traditions of community cultural groups.
Cultural considerations with research in Native American and Southeast Asians, case studies
in research ethics (Native risk assessments/dose reconstruction, data control...)
Assigned Readings: (Students will select among these readings for presentations – see also
MyCourse Folder for Culturally-Diverse Studies to make alternative selections.)
Native American:
(1) LaDuke, Winona, 1999 All Our Relations, Native Struggle for Land and Life, South End
Press, Cambridge, MA (at CES Dept. Office)
(2) Norton, I. and Manson, S., “Research in American Indian and Alaskan
Native Communities: Navigating the Cultural Universe of Values and Process”, Journal of
Consulting and Clinical Psychology, v.64, No.5, 1996
(3) Akwesasne Research Advisory Committee,, “Akwesasne Good Mind Research Protocol.”,
Akwesasne Notes, v. 2, No. 1, Winter 1996
(4) Davis, Sally; Reid, R. “Practicing Participatory Research in American Indian Communities”,
American Journal of Clinical Nutrition, v.69, i4, p.755s (1), April 1999
Southeast Asian
(1) Minkler, et al. 2003. CBPR with Cambodian Girls in Long Beach, CA: 316-322
(2) Silka, Linda 2001. Rituals and Research Ethics. Lowell, MA: University of Massachusetts, on
(3) Charles J.C., Menzie C.A..Identifying South-East Asian immigrant populations in
Massachusetts at risk from eating contaminated shellfish. Journal of Environmental Management
52, 2 (Feb. 1998): 161-71
(4) Plotinikoff, GA, Numrich, C. et al. Hmong Shamanism - Animist Spiritual Healing in
Minnesota. MN Medical Association, June 2002, v.85
Class lecture – Quigley, D., Sanchez., Handy, D., Goble, R., George, P., “ Participatory Research
Strategies for Nuclear Risk Management for Native Communities, published in Brugge, D. and
Hynes, P. Community Research and Environmental Health, 2005, Ashgate Publishers, VT.,
pp.219-245 (MyCourse site).
November 8
 Cultural considerations with African-American and Hispanic Communities– the
environmental justice movement, urban and rural case study examples in research ethics.
Assigned Readings: Students will select among these assigned readings or MyCourse Folder for
Culturally-Diverse Studies
(1) Wing, Steve 2002. “Environmental health research ethics: Lessons from community
driven studies of industrialized hog production in North Carolina”, University of North
Carolina, Environmental Health Perspectives, 110:437-444 (see
(2) Quandt, S. Arcury, T and Pell, A. “Something for Everyone? A Community and Academic
Partnership to Address Farmworker Pesticide Exposure in North Carolina”
Environ Health Perspect 109 (suppl 3):435-441 (2001).
(3) Selected presentations from “Dialogues for Improving Research Ethics – Conference
Report”.pp.11-16, p. 34 (Prakash), p. 39 (Segura)
(4) Tuskegee articles from Hasting Center Report: “Dangers of Difference”, “Tuskegee
Legacy”, “Twenty Years After: The Legacy of the Tuskegee Syphilis Study”
(5) Abernethy, Alexis, Magat, Maricar, et al. “Recruiting African-American Men for Cancer
Screening Studies: Applying a Culturally-based Model”, Health Education and Behavior, 2005,
November 15
*** Short Essay Two Due – see assignment on MyCourses
Guest Lecturer (Tentative) IRBs, Research Protections in the Community-based Context
 Student Training on Institutional Review Board Applications and Considerations for
Community Review Boards
Assigned Readings: Choose three of these readings
(1) Brown, Phil, Morello-Frosch, Brody, J, Altman, R., Rudel, R.. and Napolis, AJ, 2006. It’s
Really Burdensome (IRB): IRB Challenges in Multi-Partner Community-Based Participatory
Research; report prepared for the Collaborative Initiative for Research Ethics and Environmental
Health (CIREEH), downloaded from, November 2007.
(2) Strauss, Ronald et al. The Role of Community Advisory Boards: Involving Communities in
the Informed Consent Process. American Journal of Public Health, Dec. 2001, v.91 #12
(3) Kahn, Jeffrey,2005. Informed Consent in the Context of Communities. The Journal
of Nutrition, April, v.135,4
(4) Taylor, HA , RR Faden and NE Kass. 2008. The Ethics of Public Health Research:
Moral Obligations to Communities. International Encyclopedia of Public Health,
Elsevier, Aug. 2008
Optional: Moreno, J, Capian, A, Wolpe PR, et al. “Updating Protections for Human
Subjects Involved in Research”, JAMA, December 9, 1998 – v. 280 # 22
November 22
 Overview of Studies on Cultural Competence and Research Ethics
Assigned Readings (Select these or three alternative studies from the Folder- Cultural
(1) Howard, Cheryl et al. “The Ethical Dimensions of Cultural Competence in Border Health
Care Settings”. Family and Community Health, Jan 2001 v. 23, i4
(2) Genao, I, Bussey-Jones, J. et al. “Building the Case for Cultural Competence”, The American
Journal of the Medical Sciences, Sept. 2003, v. 326 #3
(3) Smith, Linda S. “Concept Analysis: Cultural Competence”, Journal of Cultural Diversity, v.
5, No. 1
(4) Kumagai, A. and M. Lypson. 2009. Beyond Cultural Competence: Critical Consciousness,
Social Justice and Multicultural Education. Academic Medicine, v.84, No. 6/June
Part Three: Intersubjective Approaches for Improved Ethical Research Practices
November 29
 Complementing objectivity and reductionism with qualitative, subjective data sources to
build contextual understandings through community narratives, Native science methods, and
integration of other bicultural research methods.
Assigned Readings: Students will select three readings
(1) Alaimo, K., Reischl, T. et al. We don’t only grow vegetables, we grow values in
Neighborhood Benefits of Community Gardens; in Brugge et al.. Community Research and
Environmental Health (at CES Department Office)
(2) Brown, Phil. Qualitative Methods in Environmental Health Research.
(\3) Corburn, J. Combining Community-Based Research and Local Knowledge to Confront
Asthma and Subsistence-Fishing Hazards in Greenpoint/Williamsburg, Brooklyn, New York.
Environ Health Perspect 110 (suppl 2):241-248 (2002).
(4) Loh P; Sugerman-Brozan J; Wiggins S, and others. From asthma to AirBeat: communitydriven monitoring of fine particles and black carbon in Roxbury, Massachusetts. Environmental
health perspectives. 2002 Apr; 110 Suppl 2: 297-301.
(5) Arquette, Mary et al. “Holistic Risk-based Environmental Decision-making: A Native
Perspective”, Environmental Health Perspectives, Environmental Justice, 110 (suppl 2) 2002
(6) Brugge D, Benally T, Harrison P, Austin-Garrison M, Stilwell C, Elsner M, Bomboy K,
Johnson H, Fasthorse-Begay L. The Navajo Uranium Miner Oral History and Photography
Project. In Dine baa hane bi naaltsoos: Collected papers from the seventh through the tenth
Navajo Studies Conferences. J Piper, ed. Navajo Nation Historic Preservation Department,
Window Rock, AZ. 1999:85-96.(at CES Dept. Office))
(7) Cajete, Gregory 1999. Native Science, Natural Laws of Interdependence, Clear Light
Publishers, Santa Fe, NM. Chapters 1, 2, 3, 6, 8 (at CES Dept. Office)
December 6
Student Presentations and Course Evaluation
December 13 – Final Papers Due in D. Quigley Mailbox at CES
Readings for October 18
(Connor, T. book is at the CES Department Office)
Community Voices
(1) Connor, T., 1997. Burdens of Proof: Science and Public Accountability in the Field of
Environmental Epidemiology with a Focus on Low Dose Radiation and Community Health
Studies. Columbia, SC: Energy Research Foundation. (at CES office)
(2) Russell, D., S. Lewis, and B. Keating. 1992. Inconclusive by Design: Waste, Fraud and Abuse
in Federal Environmental Health Research. Boston, MA: The National Toxics Campaign Fund
and Chesapeake, VA. Environmental Health Network.; Executive Summary and Chapter 5
Academic Reflections
(3) Sharp, Richard R. Ethical Issues in Environmental Health Research. Environmental Health
Perspectives, Nov 2003 v.111, issue 14, p.1786-1804
(4) Buchanan, D., Miller, F., Wallerstein, N. Ethical Issues in Community-based Research;
Balancing Rigorous Research with Community Participation in Community Intervention Studies.
Progress in Community Health Partnerships, Summer 2007, v.1.2, John Hopkins University
(5)Wing, S., 1998. Whose Epidemiology, Whose Health? International Journal of Human
Services, 28 (2):241-252.
(6) Sexton, K. 2000. Socioeconomic and Racial Disparities in Environmental Health: Is Risk
Assessment Part of the Problem or Part of the Solution. Human and Ecological Risk Assessment;
Option B: International Health and Clinical Research Readings
(1) Emanual, Ezekial, Wendler, D., Grady, C. What Makes Clinical Research in Developing
Countries Ethical, The Benchmarks of Ethical Research. Journal of Infectious Disease, 2004,
#189, March Perspective: 930-937
(2) Oguz, N. Yasemin. Research Ethics Committees in Developing Countries and Informed
Consent: with special reference to Turkey. Journal of Laboratory Clinical Medicine, v. 141, #5,
May 2003
(3) Palca, Joseph. African AIDs: Whose Research Rules? Science, Oct 12, 1990, v250, n4978
(4) Gbadegesin, S and D. Wendler. 2006. Protecting Communities in Health Research from
Exploitation. Bioethics, v. 20, #3, :248-253
(5) Sharp, Richard and M. Foster. Community Involvement in the Ethical Review of Genetic
Research: Lessons from American Indian and Alaska Native Populations. Environmental Health
Perspectives, v. 1101 suppl. 21, April 2002
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