Tuesday, February 24, 2009

Ethics of Community-Engaged Research

Guest blog by Community-Campus Partnerships for Health Senior Consultants Sarena D. Seifer, Nancy Shore, and Elaine Drew

A growing body of literature exists that raises questions about whether IRB processes for assuring ethical research are sufficient when applied to community-engaged research (CER).1 IRBs are designed to protect the rights and welfare of individual study participants, but are less equipped to protect the rights and welfare of communities involved in research. Specifically, some authors suggest that the Belmont principles do not fully cover the scope of ethical considerations that arise in CER (e.g., community relevance, community participation, mutual capacity building, community benefit) thus IRB application of these principles may not provide a relevant or thorough ethical analysis.2, 3

Indeed, in an analysis of 30 university-IRB application forms, Flicker et al. found that community considerations were often missing.4 While all the reviewed forms inquired about scientific rationale, none asked about the involved community’s perception or input regarding the justification for the study. Only four forms asked about community or societal level risks and benefits, and only five inquired how findings would be disseminated. Deeds et al. analyzed IRB feedback on a multi-site HIV prevention proposal and found that only 17% of IRB comments focused on community issues.5

Community-Campus Partnerships for Health
and the Tuskegee Bioethics Center recently sponsored a conference call series to examine strategies for assessing and addressing ethical issues that arise in CER, including alternative models to institution-based IRBs for research ethics review, such as community advisory boards (CABs) and community IRBs.6 A growing number of community groups and community-institutional partnerships have established such processes for ethics review, operating independently, in parallel, or in partnership with institution-based IRBs.

To better understand these processes, we conducted an online survey
of community groups and community-institutional partnerships in the U.S. involved in research, funded by the Greenwall Foundation. We identified 109 community-based processes for research ethics review that operate through a wide range of structures, from committees that report to a community-based organization’s board of directors to CABs that vet all research conducted in a community to coalition-based IRBs that review research conducted by their member community organizations. We found their main reasons for forming include ensuring that the involved community is engaged in and directly benefits from research and is protected from possible research risks. Among the benefits cited for having a process are being able to assure communities have a voice in determining which studies are conducted in their communities and that the research is relevant, feasible and builds community capacity.7

As we consider strategies to engage and protect the individuals and communities involved in research, we ask you to share your thoughts on these questions:

  • What ethical issues have arisen in your review of CER and how have you addressed them?
  • What, if any, relationships do you have with community-based processes for research ethics review?
  • How can we ensure that human subjects research protections extend to both the individuals and communities involved in research? What should be the roles of institution-based and community-based processes for research ethics review?

We look forward to an active online dialogue about the ethics of CER.

References

1. Shore N, Wong K, Seifer SD, Grignon J, Gamble VN. (2008). Advancing the Ethics of Community-Based Participatory Research. Journal of Empirical Research on Human Research Ethics. 3(2), 1-4.


2. Ball, J. & Janyst, P. (2008). Enacting research ethics in partnerships with indigenous communities in Canada: “Do it in a good way.” Journal of Empirical Research on Human Research Ethics, 3(2): 33-52.

3. Shore, N. (2006). Re-conceptualizing the Belmont Report: A community-based participatory research perspective. Journal of Community Practice, 14(4): 5-26.

4. Flicker, S., Travers, R., Guta, A., McDonald, S. & Meagher, A. (2007). Ethical dilemmas in community-based participatory research: Recommendations for Institutional Review Boards. Journal of Urban Health, e-pub (DOI 10.1007/s11524-007-9165-7).

5. Deeds, B., Castsillo, M., Beason, Z., Cunningham, S., Ellen, J., Peralta, L., & Adolescent Trials Network for HIV/AIDS Intervention. An HIV prevention protocol reviewed at 15 national sites: Do ethics committees protect communities? Journal of Empirical Research on Human Research Ethics, 3(2): 77-86.

6. Grignon J, Wong KA and Seifer SD. Ensuring Community-Level Research Protections. Proceedings of the 2007 Educational Conference Call Series on Institutional Review Boards and Ethical Issues in Research. Seattle, WA: Community-Campus Partnerships for Health, 2008.


7. Shore N, Seifer SD, Bajorunaite R, Wong K, Moy L, Cyr K and Baden AC. Understanding Community-Based Processes for Research Ethics Review (poster presentation). Presented at Public Responsibility in Medicine and Research's 2008 Advancing Ethical Research Conference, November 16-19, 2008.

9 comments:

  1. Thank you to Sarena, Nancy and Elaine for posting this essay.

    One of the challenges within the ethics of community-engaged research is one that arises from the perception of the legal individual. Individual persons and individual institutions (usually incorporated bodies) are treated as legal entities - persons in the eye of the law.

    Communities on the other hand are not limited to a person but are the result of many factors, including history, interests, migration, and policies beyond their control etc. In the same way that costs to the environment has not until recently been part of the calculation of the costs of industrial product, the effect on community has not been included in the costs/benefits analysis of research.

    Until we consider community to be part of the ecology of research, there will always be issues of exploitation and potential abuse. We need to rewire our brains to recognize that sharing is power.

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  8. I just wanted to let interested blog readers know that our study findings have been published in the American Journal of Public Health. A copy can be downloaded from the study website at http://bit.ly/hjgQXV

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  9. Greetings I recently finished reading through your blog and I'm very impressed. I do have a couple questions for you personally however. Do you think you're thinking about doing a follow-up posting about this? Will you be going to keep bringing up-to-date as well?

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