Medical Apartheid: The Dark History of Medical Experimentation on Black Americans From Colonial Times to the Present (2006) Harriet A. Washington, Harlem-Moon, 510 pp.
This year marks the fortieth anniversary of Martin Luther King Jr.'s death, so it is fitting that I am reviewing Harriet Washington's book Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. As I reflect on this book, it is clear that we have made significant changes to the way we conduct research as a result of the public exposure to the kinds of abuses that Washington cites. These changes, however, are not enough. The exploitation of vulnerable populations continues to this day, and it is for this reason that this book is a must read for those of us involved in the administration of research.
Harriet Washington is a journalist, bioethicist, and scholar, whose manuscript chronicles the history of abuses in research specifically related to African Americans. She delivers a stark message: the health profile of African Americans is deplorable. America suffers from a racial health gap that "has riven [the] nation so dramatically that it appears as if we were considering the health profiles of people in two different countries--a medical apartheid" (p. 20). According to Washington, this gap is perpetuated by an African American fear of medicine, which she refers to as iatrophobia--coined from the Greek iatros (healer) and phobia (fear). In Medical Apartheid, Washington reveals the legitimate basis for this fear, exposing a dark history of abuse and medical experimentation on unwilling and unwitting African Americans spanning 300 years.
Medical Apartheid, winner of the 2008 National Book Critics Circle Award for Non-fiction, is a well-researched book that holds value for a variety of audiences. It has obvious implications for medical and public health professionals, but it is also an important read for researchers, educators, students, and research administrators, including those who work closely with human research ethics boards. People interested in Black history, social justice, women's studies and/or children's rights will find this book to be a rich resource as well.
Interweaving history, science, and culture, Washington takes complex information and makes it reader-friendly. She divides her book into three parts and 15 chapters. Part 1, "A Troubling Tradition," chronicles the medical exploitation of Blacks from slavery to the Tuskegee Syphilis Study, providing harrowing accounts of inimical medical practices which, for the most part, were non-therapeutic and non-consensual. Washington goes beyond simply enumerating instances of abuse by providing insight into the contemporary social, political, and economic ideologies that cultivated and sustained the exploitation of African Americans. For example, she describes how scientific racism and social Darwinism were used to justify the claim that Blacks were different from Whites medically and biologically, thereby providing a rationale for slavery and a justification for the experimental abuse inflicted on Blacks.
In Chapter 7, "A Notoriously Syphilis-Soaked Race: What Really Happened at Tuskegee?," Washington traces the Tuskegee Syphilis Study from its benign origins as a treatment program intended to bolster the economic potential and self-sufficiency of Macon County to the formal 1997 presidential apology acknowledging the racist and immoral nature of the study that ensued. In this chapter, Washington writes that "Tuskegee remains the iconic symbol of racialized medical abuse," but she also notes that it is important to "separate fact from fiction [as] false beliefs generate false fears that exacerbate black aversion to medical treatment" (p. 178).
Washington effectively examines how the Tuskegee study was able to continue by situating it within the context of the time. She provides the reader with an informative, inside look at the political situation and describes both the successes and failures of the government-appointed ad hoc panel charged with investigating the study. While Tuskegee was America's longest and most infamous example of distributive injustice in research, Washington cautions against a "monomaniac" focus on this study. She clearly illustrates that the Tuskegee study was not an aberration, but part of a pattern of experimental abuse on African Americans "eclipsed in both numbers and egregiousness by other abusive medical studies" (p. 181).
In Part 2, "The Usual Suspects," Washington focuses on research conducted within the federal government and private sectors. The studies highlighted take place from the early twentieth century to the present day, and involve vulnerable populations such as African American women, children, soldiers, prisoners, and hospital patients.
Again, Washington is conscious of setting the historical stage and placing the studies that she cites within the confines of the time period. The twentieth century witnessed a refinement of earlier scientific racism that laid the foundation for eugenic theory to develop in a manner that disparaged African Americans and treated them as inferior (p. 191). According to Washington, this belief provided the justification needed for the unconscionable invasion of women's bodies and their reproductive rights. It also allowed the government and military to undertake studies on unwitting men, women, and children, exposing them to infectious agents, non-therapeutic vaccines, dangerous experimental technologies, and lethal doses of radiation.
Chapter 10, "Caged Subjects: Research on Black Prisoners," provides an historical account of research conducted in American penal institutions. Detailed descriptions of experimental abuse are interwoven with the poignant voices of prisoners who suffered pain and disfiguration from clinical, pharmaceutical, chemical, and cosmetic trials. Issues of distributive justice, informed consent, coercion and undue influence are underscored.
Part 3, "Race, Technology, and Medicine," provides chilling insight into modern genetic research, emerging diseases, and the "living weapons" of bioterrorism. However, Washington also strays into the political realm. For example, Chapter 12, "Genetic Perdition: The Rise of Molecular Bias," begins by examining the use of DNA profiling by government and law enforcement agencies. While this discussion raises important questions about racial discrimination and the right to privacy, Washington's attention is diverted from bio-medical issues to criticism of the American judicial system.
Likewise, in Chapter 15, "Aberrant Wars: American Bioterrorism Targets Blacks," Washington deviates from her discussion about American scientists who use their own citizens as test subjects in the development of biological warfare to explore the issue of racial disparity in the treatment afforded Blacks and Whites after the 2001 Washington, DC anthrax scare. The racial inequality of the government's response to this crisis is evident, but the connection between this particular instance of domestic bioterrorism and medical research is unclear.
The remainder of this section refocuses on health issues, as Washington examines the racial impact of pharmaceutical labeling, the renaissance of tuberculosis, and the HIV pandemic. Not all of Washington's arguments are convincing, and some examples are not fully supported by evidence. For instance, she alludes to, but does not offer support for, racial underpinnings in the selection of two Black men as the first recipients of the AbioCor artificial heart in 2001 and 2002. It is not clear that this constituted a disproportionate use of Black subjects, as statistics cited by Washington are incomplete. Another example is found in the epilogue, where Washington fails to support her statement that "Third World women subjects of thalidomide trials for leprosy and AIDS were not warned of the horrible birth defects the drug can cause" (p. 391).
The subject of informed consent underlies Part 3 and continues into the epilogue, "Medical Research with Blacks Today." Washington cautions against the more subtle threats endangering individuals' rights to choose whether and when to participate in research. In interesting discussions about the interplay between medicine, ethics and law, she examines the conflation of research and treatment in emergency contexts, the power of the state over that of the legal guardians of orphaned and fostered children, and the government-sanctioned waiver of informed and voluntary consent in military studies.
Medical Apartheid serves to illuminate the devastating consequences that can result when one segment of the population regards another as Other. Washington provides hope for the reader that current human research ethics policies have evolved to the point where the worst research abuses are in the past. Nevertheless, the number and nature of experiments conducted post-Nuremburg is alarming, as is the thought that history may be repeating itself. The abuses that threatened African Americans in the past have been exported to Africa as "the Third World has become the laboratory of the West" (p. 390).
In her epilogue, Washington briefly addresses the role of Institutional Review Boards (IRBs), which are mandated to judge the scientific merit and ethical acceptability of human subject research. Given the wealth of evidence uncovered in this book, it is difficult to deny her assertion that IRBs have failed to perform their role of protecting the American public as a whole and African Americans in particular (p. 401). This scant look at IRBs placed near the end of the book may leave readers fearful, wondering if indeed we have learned anything from history. Many of the abuses exposed in this book are recent; one wonders what role IRBs played in allowing these studies to take place and what justification the researchers may have used to gain approval.




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