Transformation from Unethical STD Research to Ethical Community Engagement

Background:  The U.S. Public Health Service Syphilis Study at Tuskegee (1932-72) is the longest nontherapeutic “study” in U.S. history.  A settlement was reached, but few were satisfied.  Consequently, trust between the Black community and the public health community was further aggravated. In 1997, a White House Presidential Apology was given, which included the mandated establishment of the National Center for Bioethics in Research and Health Care.  After ten years and $20M, much work was done, yet trust had not been established. What variables were needed for a bidirectional community engagement partnership between, a federal agency, an HBCU, descendants’ families and the Black community?

Methods:  Reframing the issue from a bioethics dilemma to a public health ethics problematic required an assessment of the original study which was epidemiologic more than biomedical. Environmental scans, interviews, focus groups, and healing sessions were conducted with all stakeholders to determine an evidence-based action plan and a ten year strategic plan was written.

Results:  A measurable shift occurred from dependency to interdependency; from outreach to ethical community engagement; including evaluating all university ethics education, enhancing an undergraduate Bioethics Honors Program, establishing an MPH Program, inaugurating a Public Health Ethics Course, acquiring a well-established peer reviewed journal,  strategically reengaging three generations of descendants’ family members and collaborating with local, state, regional, national and global partners in ethics activities.

Conclusions:  A shift from non-competitive, mandated federal funding to competitive, compassionate funding from several DHHS agencies has occurred.  Also, staff reductions from 21 to 10, yet 10+ peer reviewed articles have been published every year; ethics educated faculty has increased from 1 to 5; there is a Bioethics minor requirement for all the Bioethics Honors Program students; summer public health ethics graduate fellowships and undergraduate internships have been established; and Public Health Ethics is being actualized in Tuskegee.