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

摘要

In 1997 President William Clinton issued an apology to the living male survivors of the U.S. Public Health Syphilis Study at Tuskegee. While the apology became the focus for many, little attention has been paid going forward to two very important recommendations by President Clinton that accompanied the apology. President Clinton pointed out that it is through the remembering of the shameful past of the Syphilis Study at Tuskegee that we can build a better present and a better future for the nation. Second, President Clinton directed the Secretary of Health and Human Services to work in partnership with higher education to prepare training materials for medical researchers as well as postgraduate fellowships to train bioethicists to build on core ethical principles of respect for individuals, justice, and informed consent, and how to use these principles effectively in racial/ethnic minority populations, especially African Americans. This article examines bioethical research challenges left in the wake of the U.S. Public Health Syphilis Study at Tuskegee and the presidential apology. This manuscript raises for consideration the inclusion of these issues in health care reform and 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: 1) Conducting research with African Americans without knowledge of bioethics specific to this population; and 2) 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.