Tuskegee Healing, the Moral Determinants of Health, and the Ethics of Research on Black Health

My source: SpiritOf1848 list - Lachlan Forrow

Research Ethics Consortium: Tuskegee Healing, the Moral Determinants of Health, and the Ethics of Research on Black Health

February 17, 2023 | 12:30 - 2 p.m. ET | Live on Zoom | Register Here

The USPHS Study of Untreated Syphilis in the Negro Male at Tuskegee and Macon County began in 1932, after US Public Health Service doctors recorded a 39.8% prevalence of syphilis among patients seen in Macon County, Alabama during a treatment study in one corner of the county. While these data might have raised many possible research questions, USPHS doctors chose to focus on the natural history of untreated syphilis.

They not only denied participants the treatments available in the 1930’s; they also chose to continue to study untreated syphilis long after highly-effective, inexpensive, and extraordinarily safe treatment with penicillin became widely available. While the research methods they used are now universally condemned, far less attention has been given to more fundamental questions about the ethics of research, including:

What should the goals of research even be? Who should decide those? What are the most crucial ethical characteristics of relationships between investigators and research subjects?

Introductory Remarks:

• Carmen J. Thornton, MPH, MCHES
  Director of Research, Development, and Workforce, American Academy of Child & Adolescent Psychiatry
  Consultant, Voices for Our Fathers Legacy Foundation
  Granddaughter of Fred Tyson, subject in USPHS Syphilis Study at Tuskegee

Presenters:

• Susan M. Reverby, PhD
  Marion Butler McLean Professor Emerita in the History of Ideas
  Professor Emerita of Women's and Gender Studies, Wellesley College
  Author of Examining Tuskegee: The Infamous Syphilis Study and Its Legacy
• Jesse Milan, Jr., JD
  President and CEO, AIDS United
• Wangui Muigai, PhD
  Assistant Professor, Brandeis University
  Greenwall Faculty Scholar, class of 2025

Moderator:

• Lachlan Forrow, MD
  Director, Ethics & Palliative Care Program, Beth Israel Deaconess Medical Center
  Lecturer on Global Health and Social Medicine, Part-time, Harvard Medical School
  President, The Albert Schweitzer Fellowship

Commentator:

• David Augustin Hodge, Sr., DMin, PhD
  Associate Director of Education and Associate Professor, National Center for Bioethics in Research and Health Care, Tuskegee University

Support provided by the Oswald DeN. Cammann Fund at Harvard University.

This will build from two November 2022 events (see their flyers below) commemorating the 90th/50th/25th anniversaries of the USPHS Study of Untreated Syphilis in the Negro Male at Tuskegee and Macon County, the first organized/hosted by the National Center for Bioethics at Tuskegee University, the second organized/hosted by CDC (see details and video of that here; the first 2min30sec include Dr. Termika Smith’s wonderful intro [60 seconds] and President Biden’s remarks [90 seconds]. 

I would also strongly recommend watching ~5 minutes starting at 11min45sec – Mrs. Lillie Head, daughter of Fred Tyson, one of the men in the Study, and founder/leader of Voices for Our Fathers Legacy Foundation, explaining what the Study was really about (i.e. the moral issues were racism, dehumanization, etc. etc., not just “failures of informed consent”). 

For our Feb 17 session, after presentations by Carmen J. Thornton (Lillie Head’s daughter, i.e. granddaughter of Fred Tyson) and Susan Reverby (arguably the leading historian of the Study), and then presentations about applying this framework to 3 concrete areas of severe and ongoing “Black health disparities” (Jesse Milan, President/CEO of AIDSUnited on HIV/AIDS; Wangui Muigai on the history and current realities of Black maternal/infant mortality; and I hope [not yet confirmed] Rev. Jeffrey Brown [co-chair of Embrace Boston] on gun violence) the “Commentators” will be Dr. David Hodge, Associate Director of the National Center, who organized their Nov 2022 event, and Dr. Termika Smith, who organized and moderated the CDC event. Then Carmen J. Thornton, as granddaughter, will have closing words -- what her grandfather might say, and what she herself thinks, about MLK’s question: Where Do We Go From Here?