Academic journal article Public Health Reviews; Rennes

Ethical Failures and History Lessons: The U.S. Public Health Service Research Studies in Tuskegee and Guatemala

Academic journal article Public Health Reviews; Rennes

Ethical Failures and History Lessons: The U.S. Public Health Service Research Studies in Tuskegee and Guatemala

Article excerpt

INTRODUCTION

Bioethics was "born in scandal and raised in protectionism," as the much used phrasing from bioethicist Carol Levine goes. It reminds us that historical case studies of horrific ethical violations birthed the need to protect human subjects and to regularize the use of informed consent.1,2 Less often acknowledged is that bioethics has been so nourished by melodrama, a form of theatric understanding that focuses on known stories and familiar characters, that the effort to provide a different form of sustenance has often been problematic. My own scholarship and media experiences as an historian of two key American research tragedies demonstrate these dangers in the stock recountings that undermine the ethical lessons to be derived.

My work has focused on two troubling studies in American medical research history: 1) the United States Public Health Service (PHS) Study of Untreated Syphilis in the Male Negro, better known as the Tuskegee Syphilis Study (1932-1972) for which then President Bill Clinton apologized in 1997; and 2) the U.S. PHS Inoculation Sexually Transmitted Diseases (STD) Studies in Guatemala (1946-1948) that received worldwide attention, a high-level U.S. government apology to Guatemala on October 1, 2010, and government sponsored reports in both countries.3-9 Each of these studies involved the powerful U.S. government, focused on primarily poor and rural African American men in one case, and Guatemalan sex workers, mental patients, soldiers, and prisoners in the other. Each entailed deceptions, lack of any real consenting processes, and the intended failure to treat syphilis in Tuskegee, and the actual purposeful transmission of potentially life-threatening STDs in Guatemala.

The study in Tuskegee went on for four decades as hundreds of African American men, 439 with late stage syphilis and 185 controls without the disease were watched, but not supposed to be treated. The study in Guatemala extended for two years, recruited more than 1300 men and women, and involved infecting them with syphilis, gonorrhea and chancroid and then treating a little more than half of them (but not all and perhaps not long enough).i

Each study conjures up almost primordial and powerful fears: lack of control over our own bodies, dangers of abuse by those with great power, terror of putting trust in physician/scientists who respond with what many see as close to medical torture, and perhaps most destructively the racism of treating people of color as the "other" both in the U.S. South and the Global South. Each had physical procedures that are fairly horrific: diagnostic spinal taps described instead as "special treatment" in Tuskegee, and the use of sex workers, spinal punctures, and the abrading of men's penises and women's cervixes to deliver the disease inoculums in Guatemala. Each concerned dreadful diseases that are primarily sexually transmitted. Both have also been analyzed in the context of the racism and imperial power that made it possible for the doctors to believe they had the right to do the studies, and have fueled suspicion of public health and medicine. (For more on the question of whether or not the study in Tuskegee has left a lasting sense of suspicion of public health research, see refs.10,11)

Nevertheless, trying to make their histories more factually accurate, focused on their institutional underpinnings, and not seen as something out of the "bad old past" has been difficult to do. A complicated, but more nuanced historical analysis is limited by the strong beliefs about what the stories are supposed to be about and the seemingly obvious ethical lessons to be derived. This is especially difficult because these horrific medical histories are central to bioethical considerations. For in much of bioethics, in particular, cases of infamous wrongdoing play a crucial role: they serve almost as what critic Sacvan Bercovitch called in another context "American jeremiads." Named after the prophet Jeremiah, in these lamentations "moral outrage" is raised to emphasize a fall from previous grace, "anxiety" about the present, and the "reaffirmat[ion] of America's mission," or in this case medical and public health research's missions. …

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