I invite you to watch Dr. William Carter Jenkins’ address to the APHA annual meeting, and reflect with me whether Dr. Jenkins assertion that the Tuskegee Experiment met all the criteria for participatory research.
I have a lot of respect for Dr. Jenkins and his attention to history. Understanding history is critical to developing a vision for social, political, and economic chance, and to effectively pursue that vision.
Dr. Jenkins listed many criteria for community involvement, including cultural competence, community advice, community consent, and community origination and details the ways in which Tuskegee met these criteria. And it does emphasize some questions that practitioners have been wrestling with for some time. How do we define community? Can organizations stand in as representative decision-makers for whole communities? This is very convenient for other institutions looking to partner, but is it fundamentally participatory or ethical? To what extent does engaging individuals from under-represented groups in research or public health simply constitute co-optation of community models of action and knowing to institutional models of action and knowing?
I thank Dr. Jenkins for raising these critical questions, but strongly take issue with his notion that the Tuskegee Experiment can qualify for participatory research. It does not meet two basic criteria: 1) the experiment utterly failed to reflect the values and interests of the community members, and 2) the experiment was not designed and failed to lead to action to promote the well-being of the involved community. Community values and action orientation underly all fundamentally participatory research.
I agree with Dr. Jenkins that participatory research is not a panacea, but it is a vital step toward both democratizing science and toward translating science to policy (or making science more relevant to policy). His perception that the Tuskegee Experiment meets the criteria for CBPR, gives me pause when I think about my work with scientists and communities. I have seen the value in baby-stepping researchers toward community-driven research. Collaboration is both an orientation and a skill set. Some people who have the orientation and don’t yet have the skills can be mistaken for inauthentic or uncommitted. But there are also countless examples of co-optation, exploitation and simple abuse of community members and organizations by academic and governmental institutions. There is a huge range of practice out there. What is most useful is to think about the whole spectrum and where we lie on that spectrum at any given time. How does our practice match our goals?
But let us be clear on one point: The Tuskegee Experiment was not participatory research.