D. Tuskegee Syphilis Study and Distrust Amongst African American Women: Traditionally Unexposed Root Causes
The life experiences of Black women and health care often present intersecting issues involving reproductive health. The Black woman's particularized experience is traditionally marginalized, but nonetheless deeply seeded in distrust, which is both historically based and existent in contemporary instances of medical research. A historical account of the Black woman being “studied” is the ‘her-story’ of Saartjie Baartman, a Black South African Khoi-San woman often referred to as the “Hottentot Venus.” George Cuvier, known as the “Father of Paleontology and Comparative Anatomy,” dissected her body at an autopsy and published his “scientific findings:” a “document [of] monkey-like” racial differences that fortified beliefs of Black inferiority for more than a century. Another historical her-story occurred at the hands of Dr. J. Marion Sims, who was known as the “Father of Gynecology;” Dr. Sims appropriated the Black woman's body as a reservoir for scientific knowledge in order to discover a cure for “vesico-vaginal fistula,” a medical condition involving internal *182 tears in the vaginal wall leading to urinary and sometimes fetal incontinence, most often caused during traumatic childbirth. The ‘her-story’ of Anarcha, Betsey, Lucy and other un-named enslaved Black women lay at the intersection of race, gender, and reproductive health, resulting in the development of the specialty of gynecology in the United States. As to the Tuskegee Syphilis Study and distrust amongst Black women, a reproductive justice lens would bring to focus the inherent structural inequality of the selective construction of Black women's bodies at the behest of scientific goals, whether “raced” or “gendered” depending on the end-state outcome - or as Fraser refers to it, the “affirmative remedy.”
For instance, Cuvier's dissection of Saartjie Baartman's “raced” body ultimately resulted in findings which supplied the “scientific” affirmation of the natural inferiority of Blacks. In comparison, Sims' unanesthesized experiments on the “gendered” bodies of Anarcha, Betsey, and Lucy ultimately resulted in medical technologies and surgical instruments that benefited all women, both then and now.. However, the Tuskegee Syphilis Study reflects the selectivity of white governmental doctors' decisions to exclude all females in the research protocol with respect to a venereal disease that impacted both males and females. Even though race situated the Tuskegee women in the so-called “notoriously syphilis soaked race,” her gender deemed her an “unworthy” human subject. A reproductive justice lens clarifies the reality that Nurse Rivers was “powerless to advocate for the wives of the men [in the study] who asked why only men could be in the study.” “‘We're sick too, Nurse Rivers,”’ they said.” It is the axis of historical and social context that accounts for feelings of distrust among African American women and the healthcare system; and this axis makes structural inequality evident. Recent research indicates that:
Distrust of the white dominated medical community either because of Tuskegee or the long history of the subordination of black people in [a given] community at the hands of whites, *183 obviously plays some role in the reluctance of blacks to participate in clinical research. In the black community suspicions linger about the real goals of medical research-especially when the research involves genetic screening.
Even though the poor representation of Black women in medically oriented research is well-documented, the reasons for the low participation do not solely rely on the exploitation and abuse of the Tuskegee Syphilis Study. In order to locate equitable research, a reproductive justice lens would train one to “make research participation more meaningful to people from differing backgrounds and improve research methodologies to be inclusive for all segments of the population.” The utilization of a reproductive justice lens will aid in the establishment of a transformative remedy to teach about the impact of the Tuskegee Syphilis Study, by addressing both traditionally exposed and unexposed roots of injustice concerning Black women and research.