Minority Report: A Legacy of Contributions and Abuses
Posted by: Vanessa Bush
In The Immortal Life of Henrietta Lacks, Rebecca Skloot chronicles the amazing story of the medical breakthroughs gained from a black woman’s cell line. I heard Skloot last week on NPR’s Fresh Air where she told host Terry Gross that in 1951 Henrietta Lacks was diagnosed with terminal cervical cancer. A doctor at Johns Hopkins University treated her disease and snipped cells from her cervix without telling her. Those cells were cultured and used in experiments on everything from polio vaccine to the long-term effects of radiation. Her cells were patented and marketed and earned millions of dollars for the medical researchers — all without the knowledge of her family until some 20 years after her death.
Medical writer Skloot examines the legacy of Lacks’ contribution to science and the effects on her family, wary of the medical establishment that has a long and troubled history with black folks. The best known case of medical research abuse involving black Americans is, of course, the Tuskegee experiments of the 1930s to study the long-term effects of untreated Syphilis, without knowledge or consent of the patients, imprisoned black men.
After listening to Skloot, I tracked down a book I’d read a few years ago, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans From Colonial Times to the Present, by Harriet A. Washington.
Medical journalist Washington wrote of the shameful history of the physical and medical misuse of black Americans long before the Tuskegee experiment. She cited medical journals and previously unpublished reports that openly acknowledged racial attitudes and experimentation. She detailed a litany of medical abuses and experimentation aimed at black men in the military and in prison, as well as women and children, all without proper notification or consent.
More recently, I read The Protest Psychosis: How Schizophrenia Became a Black Disease, by psychiatric professor Jonathan M. Metzl, revealing that in the 1960s schizophrenia was racialized from an illness suffered by sensitive white intellectuals to one of disaffected angry black men who were diagnosed and locked up for their aggressive reactions to racism.
So, I’m not surprised at the revelations of Skloot’s book but what The Immortal Life of Henrietta Lacks shows is the stunning — and generally unacknowledged — contributions of black Americans to medical research. But it would be so much better if the contributions were made willingly, which raises the concern that too many black Americans shy away from medical research precisely because of the troubled past.