Harriet Washington: Defends her book on medical apartheid after negative NYT book review

In 15 chapters and 501 well-annotated pages, my book “Medical Apartheid” offers a careful, nuanced discussion of trends, cases, problems, ethics and persistent patterns in the disparate treatment of black research subjects. However, Ezekiel Emanuel’s review (Feb. 18) ignores its rich content in order to claim that “Medical Apartheid” fails to place the experience of African-Americans in context. He dramatically misrepresents the work within an untrustworthy review that is rife with distortions, contradictions, errors, exaggerations and confusions.

Emanuel’s own troubling research agenda, elements of which I criticize in “Medical Apartheid,” may be pertinent. He champions such dubious policies as offering undue inducement to poor people and offering research subjects in developing countries inferior medications and standards of protection.

I have been allotted 650 words, insufficient for a point-by-point refutation, so I’ll address a smattering of his many mischaracterizations and errors.

Emanuel ignores how consistently “Medical Apartheid” quantifies my statements about the disproportionate use of blacks in abusive medical research. For example, researchers’ own statements reveal that the experimental development of gynecologic surgeries like Caesarian section, vesicovaginal fistula repair and ovariotomy were perfected almost exclusively using enslaved black women. The disproportionate theft of black cadavers was validated by records and events like the 1989 discovery of 9,800 bones, 75 percent from blacks, in the basement of the Medical College of Georgia’s former anatomical laboratory. Dr. Eugene Saenger’s fatal radiation experiments in 1950s Cincinnati were performed on a subject pool that was 75 percent black. The subjects of many other radiation experiments were all black, like the patients at Dooley and St. Phillip hospitals in Virginia who were intentionally given third-degree radiation burns by scientists “for investigational purposes.” By 1983, 43 percent of women sterilized by federally funded eugenic programs were black. Approximately 80 percent of the boys in the 1970s Baltimore XYY studies were black, as were nearly all of the children in that city’s KKI lead study. Every boy in a 1990s New York City fenfluramine experiment was black.

Medical treatment and public-health initiatives can also constitute medical research. Emanuel disingenuously writes as if an initiative must be either one or the other in order to accuse me of conflation. Despite Emanuel’s bewildering claim to the contrary, the “Black Stork” chapter does focus heavily upon medical research, including racialized studies that fueled involuntary sterilizations, Norplant and Depo-Provera investigations, research distortions that created the myth of the “crack baby,” and nonconsensual research with pregnant black South Carolina women.

Far from castigating directly observed therapy for tuberculosis, I lament that it is too often eschewed in favor of imprisonment. Thalidomide is indeed being given to black women subjects in Africa, and researchers fear that its presence in semen may make its use in men hazardous. Despite Emanuel’s assertion, the book is supported by a plethora of notes filling 50 pages.

Emanuel’s tenuous grasp of history is typified by his non-exculpatory focus on tangential, oft-told events and by the errors crammed into the single sentence with which he attempts to reconstruct the U.S.P.H.S. Study of Syphilis in the Untreated Negro Male. The men first were denied Salvarsan, not only penicillin; a significant minority obtained treatment; the study’s goals included not only observation but also a validation of a racially dimorphic progression of syphilis and diagnostic refinements. Researchers’ goals could not be accomplished without autopsy, and so were not achieved before death.

He falsely claims that “for Washington, the answer comes down to one thing: skin color.” Actually, I describe a terrible confluence of factors that changed over time, including a precise variant, scientific racism. My discussion of factors that tempered or trumped racism includes economics, politics, utilitarianism, communitarianism, black complicity, white beneficence, forbidden knowledge, deontological frameworks and social-justice issues. Emanuel’s failure to acknowledge these sophisticated arguments is a startling omission. Perhaps he is interested only in silencing them.

[To read the book critic's response click on the SOURCE link above.]

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