Abstract
We conducted and analyzed qualitative interviews with 12 persons working on the Healthy Public Housing Initiative in Boston, Massachusetts in 2001. Our goal was to generate ideas and themes related to the ethics of the community-based participatory research in which they were engaged. Specifically, we wanted to see if we found themes that differed from conventional research that is based on an individualistic ethics. There were clearly distinct ethical issues raised with respect to projects and individuals who engage in community-based collaborations. The differences that arose from the interviews were seeking equality between the partners, the need for the community partner to defend the community, dealing with unflattering data, meeting community expectations and producing tangible benefits to the community.
Similar content being viewed by others
References
Baker E.A., Homan S., Schonhoff R. and Kreuter M. (1999) Principles of Practice for Academic/Practice/Community Research Partnerships. American Journal of Preventive Medicine (April) 16(3 Suppl): 86–93.
Israel B.A., Schulz A.J. and Parker E.A. (1998) Review of Community-Based Research: Assessing Partnership Approaches to Improve Public Health, Annual Review of Public Health. 19: 173–202.
Schensul J.J. (1999) Organizing Community Research Partnerships in the struggle Against AIDS, Health Education and Behavior 26(2): 266–283.
Sullivan M., Kone A., Senturia K.D., Chrisman N.J., Ciske S.J. and Krieger J.W. (2001) Researcher and researched-community perspectives: Toward bridging the gap. Health Education & Behavior 28: 130–149.
Minkler M. and Wallerstein N. Eds. (2003) Community-based participatory research for health. Jossey-Bass, San Francisco.
Weijer C. and Emanuel E.J. (2000) Protecting communities in biomedical research. Science 289: 1142–1144.
The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research, The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. April 18, 1979.
Levine, R.J. (1988) Ethics and Regulation of Clinical Research, 2nd Ed., Yale University Press, New Haven, p. 13.
Weijer C. (1999) Protecting Communities in Research: Philosophical and Pragmatic Challenges, Cambridge Quarterly of Healthcare Ethics, Cambridge University Press, USA, pp. 501–502.
Lehrman, S. (1997) Jewish leaders seek genetic guidelines, Nature 389: 322.
Inouye, J. (1999) Chapter 18: Asian American Health and Disease, in: Huff, RM, and Kline, MV (eds.) Promotion Health in Multicultural Populations: A Handbook for Practitioners, Sage Publications, Inc., Thousand Oaks, CA, p. 349.
Casken, J. (1999) Pacific Islander Health and Disease, in: Huff, RM, and Kline, MV (eds.) Promotion Health in Multicultural Populations: A Handbook for Practitioners, Sage Publications, Inc., Thousand Oaks, CA, p. 414.
Suarez, L, and Ramirez, A.G. (1999) Hispanic/Latino Health and Disease, in: Huff, RM, and Kline, MV (eds.) Promotion Health in Multicultural Populations: A Handbook for Practitioners. Sage Publications, Inc. Thousand Oaks, CA, p. 120.
Christakis NA. “The ethical design of an AIDS vaccine trial in Africa.” Hastings Center Report 1988;18(3):31–7.
Angell, M. (1997) The Ethics of Clinical Research in the Third World, New England Journal of Medicine 337(12): 847–9.
Anonymous (2002) Fair Benefits for Research in Developing Countries, Science 298: 2133–2134.
Ryan L. Researching Minority Ethnic Communities: A note on Ethics. 〈http://www.ucc.ie/ucc/units/equality/pubs/Minority/ryan.htm〉 accessed June 27, 2002.
Brown, LD. People-Centered Development and Participatory Research. Harvard Educational Review 1985; 55(1): 69–75.
United States. U.S. Bureau of the Census, Current Population Survey. Historical Poverty Tables. Washington D.C.: Poverty and Health Statistics Branch/HHES Division, 2001. 〈http://www.census.gov/hhes/poverty/histpov/hstpov4.html〉 accessed June 27, 2002.
United States. U.S. Bureau of the Census, Current Population Survey. Poverty in the United States 1999. Washington D.C.: U.S. Department of Commerce, 2000. 〈http://www.census.gov/prod/2000pubs/p60-210.pdf〉 accessed June 27, 2002.
El-Askari G., Freestone J., Irizary C., Kruat K.L., Mashiyama S.T., Morgan M.A. and Walton S. (1998) The Healthy Neighborhoods Project: A Local Health Department’s Role in Catalyzing Community Development, Health Education and Behavior 25(2): 146–159.
Bradley M., (2001) Personal communication, Executive Director, Committee for Boston Public Housing, Boston, MA.
Hynes P., Brugge D., Watts J. and Lally J. (2000) Public health and physical environment in Boston public housing, Planning, Practice, and Research 15: 31–49.
Brugge D., Rice P., Terry P., Howard L. and Best J. (2001) Housing conditions and respiratory health in a Boston public housing community, New Solutions 11(2): 149–164.
Brugge D., Vallarino J., Ascolillo L., Osgood N., Steinbach S. and Spengler J. (2003) Comparison of multiple environmental factors for asthmatic children in public housing, Indoor Air 13: 18–27.
Glesne C. and Peshkin A. (1992) Becoming qualitative researchers: An introduction, Longman, London.
Siedman I.E. (1991) Interviewing as qualitative research: A guide for researchers in education and the social sciences, Teachers College Press, New York and London.
MacQueen K.M., McLellan E., Metzger D.S., Strauss R.P., Scotti R., Blanchard L. and Trotter R.T. (2001) What is community? An evidence-based definition for participatory public health, AJPH 91: 1928–1938.
Marshall P.A. and Rotimi C. (2001) Ethical challenges in community-based research, American Journal of the Medical Sciences 322: 259–263.
Author information
Authors and Affiliations
Corresponding author
Additional information
Alison Kole is an MD/MPH candidate, Tufts University School of Medicine.
Rights and permissions
About this article
Cite this article
Brugge, D., Kole, A. A case study of community-based participatory research ethics: The healthy public housing initiative. SCI ENG ETHICS 9, 485–501 (2003). https://doi.org/10.1007/s11948-003-0046-5
Received:
Revised:
Accepted:
Issue Date:
DOI: https://doi.org/10.1007/s11948-003-0046-5