Research Challenges and Bioethics Responsibilities in the Aftermath of the Presidential Apology to the Survivors of the U. S. Public Health Services Syphilis Study at Tuskegee

Abstract

In 1997 President Clinton apologized to the survivors of the U.S. Public Health Service Syphilis Study. Since then, two of his recommendations have received little attention. First, he emphasized the need to remember the shameful past so we can build a better future for racial'ethnic minority populations. Second, he directed the creation in partnership with higher education to prepare training materials that would instruct biomedical researchers on the application of ethical principles to research with racial/ethnic minority populations. This article proposes the inclusion of these issues in the implementation of the Affordable Care Act. It asks, What is the right or good thing to do? What are our obligations to one another? Two challenges are examined: (a) Conducting research with African Americans without knowledge of bioethics specific to this population, and (b) the ethical dilemma of conducting research that does not adequately take into account the diversity within the Black population that is a contributing factor in health disparities. Training and policy recommendations responsive to President Clinton's Apology are presented.

Keywords:

• Presidential Apology
• Affordable Care Act
• population health ethics
• research ethics training

Acknowledgment

This work was supported by funding from the National Center on Minority Health and Health Disparities (MD000508) and the UCLA Chancellors Office for Faculty Development and Diversity. This article is drawn from a talk given for the 11th Anniversary of the Tuskegee Apology at the Tuskegee Bioethics Center. I thank the families of the men who participated in the U.S. Public Health Service Syphilis Study at Tuskegee who attended the event for generously sharing with me their thoughts and concerns about this historic study.