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"How we go about engaging the people who stand to benefit most from our research is essential."
It was May 16th, and the year was 1997. I had just ended my freshman year at Tuskegee University as an undergraduate student and Bill Clinton was U.S. President. It was on this day that the President issued the first formal public apology on behalf of the U.S. government for the infamous Tuskegee Experiment, more formally known as the Tuskegee Study of Untreated Syphilis in the Negro Male. This apology, which came two and a half decades after the 40-year study ended, was the moment that would mark the beginning of my journey in addressing health disparities and inequities, both in my career as a bedside nurse and as a future scientist of color.
The injustices of the Tuskegee Experiment taught us many lessons about the importance of ethical research, especially with marginalized populations. Fast forward to the present day. I’d like for readers of this issue to reflect on the ethical engagement of participants in research. In the social and behavioral sciences, this may be considered community-based participatory research (CBPR), or patient-centered research. How we go about engaging the people who stand to benefit most from our research is essential. Are they members of our research teams? Can we include them as we formulate our research questions or design our studies? Do we invite them as co-authors as we disseminate our findings? In my research, I work primarily with African Americans living with HIV, and some of my most well received presentations are those in which I co-present with a member of this community.
In the spirit of inclusive excellence, let us affirm our commitment to doing research differently. Consider the future possibilities of how engaging the populations we serve in every step of the research process will yield the best outcomes.
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