Some talking points for my health care ethics class at Creighton this week:
In week four, I contrasted Wallwork (2008) and Speer’s (2008) differing approaches to community involvement in research. In order to accommodate community insights, foster inclusiveness, and facilitate power-sharing, I suggested that community-research partnerships (CRPs) as highlighted by Wallwork would be “a far better approach” than Speer’s perfunctory inclusion of cultural, racial, and gender diversity on IRBs, which today should be de rigueur. Thus, I was delighted to have the opportunity to revisit Wallwork’s reflections this week.
Wallwork describes the development of CRPs, which are designed to extend protections typically afforded to members of vulnerable populations, to vulnerable populations qua people groups. This represents an evolutionary development in thinking about human research participants: not only are they autonomous selves, but also they are social creatures.4(p61) The result of this development is that ethical principles such as respect for persons, beneficence, and justice, as identified in the Belmont Report,2(p150) can be applied also to people groups. Thus, CRPs can help bridge the gap between between researchers and their desire to make discoveries and human beings and their need for community.
In an important review of HIV/AIDS and substance abuse research among indigenous American communities, Baldwin et al. (2009) note the difficulties in establishing research partnerships with those communities. Previous insensitive research practices have led to injustices against those communities including the perpetuation of negative stereotypes, over-research, and lack of benefit for communities participating in research.1(pS78) CRPs, with their emphasis on community justice, would minimize such inequalities by expanding ethical principles to cover community needs. Here, a few examples are in order.
First, the traditional rendering of respect for persons requires that an individual’s right of choice be preserved and that non-autonomous persons are protected. By expanding that principle, individual choices negatively impacting the community can be minimized. Second, beneficence entails “doing no harm” to individuals participating in research and acting on behalf of their well-being. Yet the insights of Baldwin et al. support the concept of minimizing community harm by protecting community interests. Finally, justice requires an equitable distribution of the benefits and burdens of research. An expanded version of this principle would minimize the exploitation of people groups while allowing for community involvement and approval of research design.
As I wrote for week four, CRPs offer a fresh approach to addressing “the complexity of human persons as they interrelate in a variety of communities (language, ethnic, region, sex, race) as social creatures.” However, that is not to say that CRPs are a panacea for community injustices. For example, Wallwork notes that while we find that many communities are cohesive, “vulnerable communities are identified by their comparative weakness.”4(p59) Nevertheless, CRPs can empower some communities enjoying a distinct community identity with the knowledge that their rights and views and welcome–and respected.
1. Baldwin JA, Johnson JL, Benally CC. Building Partnerships Between Indigenous Communities and Universities: Lessons Learned in HIV/AIDS and Substance Abuse Preventative Research. Am J Pub Health. 2009;99:S77-S82.
2. Beauchamp, TL. The Belmont Report. In: The Oxford Textbook of Clinical Research Ethics. Emanuel EJ, Grady C, et al., eds. New York: Oxford University Press: 149-155.
3. Speers MA. 2008. Evaluating the Effectiveness of Institutional Review Boards. In: The Oxford Textbook of Clinical Research Ethics. Emanuel EJ, Grady C, et al., eds. New York: Oxford University Press: 560-567.
4. Wallwork E. Ethical Analysis of Research Partnerships with Communities. Kennedy Inst Ethic J. 2008;18(1):57–85.
