1. Race in 20th c. US medicine HI31L Week 14

2. Context: Medical Ethics and Medical Experimentation in the 20 th c. Assessing the growing role of experiment in medicine The Medical Perspective The Legal Perspective (post-Nuremberg)

3. The Medical Perspective “Medical experimentation on human beings, in its broadest meaning and for the good of the individual patient, takes place continually in every doctor’s office… 1953 “To do nothing... is itself a type of experimentation…” 1953

4. The Medical Perspective “a primary scientific criterion of usefulness in medical research is whether the observed phenomenon can verily be produced in or applied to human beings... At some point in any medical research, therefore, the investigation must be performed with human beings, if that research is to fulfill its primary objective... Despite these obvious considerations, and despite the demonstrated value of medical research in terms of saving life, relieving pain, and achieving other goals considered worthy, the use of human beings for experimental purposes often encounters vigorous opposition.” 1953 (post Nuremberg)

5. The Legal Perspective (post-Nuremberg) Principles laid down by Nuremberg: voluntary consent informed consent all unnecessary pain and suffering must be avoided no experiments which EXPECT death or disabling injury to occur (except self-experimentation) sufficient benefit both to individual & to society to justify risk adequate animal model research, and natural history of disease to support expectations of benefit. adequate prep and facilities to handle any adverse possibilities, however remote. experiment to be conducted only by scientifically qualified individuals subject must be able to stop the experiment at any time scientist must be prepared to stop the experiment at any time if risk of continuation become apparent

6. The Legal Perspective (post-Nuremberg) Implied: subjects cannot be selected based on race, class, creed, educational status; human research demands a team approach to ensure both ethical and scientific standards are maintained.

7. Patients or ‘material included in the study’?

8. Context: The 19 th sciences of (embodied) race

9. Dangerous crossings: intersections of race and experiment in 20 th c US medicine I.The Tuskegee Syphilis Experiment Syphilis in rural Alabama Goals of the TSE Chronology of the Tuskegee experiment II. Reponses to Tuskegee, 1930-1974

10. Goals of the Tuskegee Experiment: “the purpose is to confirm the presumptive manifestations of cardiovascular disease if possible, and to corroborate the accuracy of clinical observations in general.” 1936 “All syphilologists recognize the great importance of treatment during the first two years of the syphilitic process, and all are likewise of the opinion that treatment during this period should be adequate. An accurate evaluation of the treatment of syphilis is however, made difficult by many factors.... In comparing the results obtained by modern treatment with those in untreated cases, it is important that both groups be observed for a definite period. An observation period of at least 20 years or more is necessary to give a true picture of the value of therapy.”

11. The Tuskegee Syphilis Experiment late 1932: Public Health Service begins a large-scale but initially short-term study of untreated syphilis in the adult male Negro population. 1933 study converted to long-term study, ENDING IN POST- MORTEM 1935 $50 burial stipend offered to families of men in study (of which $15 taken to pay pathologist at autopsy, which was required to get the $50!) 1936 First published results already show these men having serious sequelae -- mainly cardiovascular. -- 4 times more morbidity than the control pop. 1938-9 re-evaluation ; 14 untreated patients added to the study, and infected controls shifted to the experimental group. late30s, early 40s Sulfa drugs added to the arsenal of VD therapies 1940-43 Penicillin shown to be effective, but rationed by military 1941-3 TSE subjects of draft-age physically examined by army, sent letters informing them to get treatment for their disease; TSE doctors intervene and get exemption for their ‘boys’: 1943 PHS starts administering penicillin to subjects at SOME clinics

12. The Tuskegee Syphilis experiment 1944 25% had died (14% of controls) 1946 PHS takes over penicillin research; AMA adopts first code of practice for human experimentation, based on early reports of Nazi medical atrocities 1952 59% dead (45% control) Many of survivors were determined to have received some treatment for syphilis -- not provided y the study -- 20% judged to have received adequate treatment “the fact that a greater proportion of those who received some but inadequate treatment were still living probably reflects only age differentials... 1955 ‘volunteers with social incentives”? 1964 PHS praises the study, argues that the selection and ‘therapy’ offered by the study minimized the effects of untreated syphilis... 1965 first public critiques -- unanswered 1969 study examined by CDC, who decided to continue it

13. The Tuskegee Syphilis experiment 1971 USPHS worker (Non-physician) leaks details to media 1972 experiment stopped after media disclosure 1974 National Research Act of 1974 -- mandating institutional review board approval for all federally funded projects -- the first such federal legislation 1989 African Americans remain heavily under- represented in clinical trials, in part due to low enrollments, part due to prejudices which stereotype African Americans and other minorities as ‘non- compliant’ and as having too many ‘confounding factors’ 1997 Clinton apologizes to survivors and the families of the dead from the TSE

14. “The PHS sees the poor, the black, the illiterate and the defenseless in American society as a vast experimental resource for the government.”

15. “In our free society, anti-syphilis treatment has never been forced... no one has ever implied that syphilis was a benign infection” -- Dr. R. Kampmeier of Vanderbilt School of Medicine, blaming the victims for not seeking treatment.

16. “Sometimes, with the best of intentions, scientists and public officials and others involved in working for the benefit of us all, forget that people are people. They so totally on plans and programs, experiments, statistics -- on abstractions -- that people become objects, symbols on paper, figures in a mathematical formula, or impersonal ‘subjects’ in a scientific study. [This ‘scientific blindspot’ was responsible for] a moral astigmatism that saw these black sufferers simply as ‘subjects’ in a study, not as human beings.” Atlanta Constitution, 1972.

17. Reactions to Tuskegee (urban East Coast)

18. Reactions To Tuskegee (the West)

19. Reactions to Tuskegee (the South)

21. Effects of Tuskegee On race relations On medical research On the doctor- patient relationship On public perceptions of medicine, ethics

22. (revised) Public Health responses

23. Tuskegee Today

24. Seminar Questions How was race defined in 20th c. American medicine? What role(s) did/does technology play? Was/ is 20th c. US medicine racist? What has happened to ideas of medical distinctiveness?

25. Carolyn Thomas de la Pena ‘A century has passed since Pancoast’s declaration and we still have yet to get his story right … I contributed to the historical inaccuracie about Pancoast’s work … Relying on popular press accounts and secondary sources … I erroneously claimed (and saw my claim repeated…) that Pancoast had engaged in experiments designed expressly to whiten the skin of black patients.’ p.28