Cultural Competence and Ethics: Community Health ...



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 By appointment

Dianne_Quigley_1@brown.edu 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 studies.

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 post-modern 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 ethnically-diverse 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:

Required

(1) Beauchamp, T. and Childress, J. 2001, Principles of Biomedical Ethics, Oxford University Press,

(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 Groups

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, Jan/Feb.

(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, Spring.

*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—science.ober/humsubj/

(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 Community-Academic Partnered Participatory Framework. Ethnicity and Disease, v. 16, Winter 2006 (CES Office)

(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 website,

(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

**Optional

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,

32:441

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 Competence).

(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: community-driven 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

**Optional

(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

_____________________________________________________________

Appendix

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 Press

(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; 6:561-574

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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