III. Reproductive Justice Lens for a Transformative Remedy

When you [see] better, you [teach] better.”

Medical education should address the Tuskegee Syphilis Study's “blind spot” by also acknowledging the women who were directly impacted by the Study. Robby Reynolds, MPA, Director of MedEd PORTAL & CurrMit points out, “[m]edical schools need tools and resources beyond a curriculum management system in the areas of Evaluation, Curriculum Content Delivery and Scheduling.” The Tuskegee Syphilis Study's biomedical significance to women is not adequately addressed in medical schools. It is essential that a reproductive justice framework be implemented to assist in the development of culturally competent curricula, as it relates to the Tuskegee Syphilis Study's impact on women. A transformative remedy would acknowledge the problem relating to distrust of the public health care system amongst Black people generally, and Black *174 women specifically. There are several critical teaching tools for reexamining the Tuskegee Syphilis Study.

A. Reproductive Justice Lens

According to Bernadine Healy, M.D., former Director of the National Institutes of Health, “[b]eing different from men [has] meant being second-class and less than equal for most of recorded time and throughout most of the world. Adding to Healy's observation, a reproductive justice framework is needed to acknowledge yet another degree of “second-class” citizenry: when the difference occupies the body of a woman subordinated within “intersecting oppressions of race, class, gender, sexuality, and nation.” According to the SisterSong Women of Color Reproductive Justice Collective: Reproductive Justice is a base-building analysis that focuses on organizing women, girls and their communities to challenge structural power inequalities in a comprehensive and transformative process of empowerment. The Reproductive Justice analysis offers a compelling and more defensible framework for empowering women and girls and is relevant to every American family.

The utilization of a reproductive justice lens in medical schools to achieve cultural competency accreditation standards necessitates going beyond “asking the women question,” particularly when critically analyzing a facially neutral issue such as the selection of research subjects. The aspect of reproductive justice that challenges structural inequality would require one to reframe the “asking the woman question” to the “asking the woman *175 of color question,” so as to acknowledge gender, race, and class disparities in healthcare generally, as well as research specifically. Applying a reproductive justice framework to the recounting of the Tuskegee Syphilis Study - historically as well contemporarily - calls for a critique of women and research.

Vanessa Merton argues:

For too long, gender has substituted for more precise biological attributes to achieve and illusory “homogeneity” that serves certain research goals at the expense of others. From a \ woman's point of view, this model of research has not been more efficient. Efficiency requires definition of a desired endpoint and assessment of the extent of its achievement. For women, the desired endpoint of biomedical research- knowledge useable by and useful for the entire universe of people, including the pregnant and potentially pregnant woman- had not been achieved to any satisfactory degree.

Exploring the “asking the woman of color question” when examining the Tuskegee Syphilis Study yields great insight into present day omissions of research involving women. According to the reports from the initial meetings on framing the protocol for the Tuskegee Syphilis Study, females were not selected “because it [would be] next to impossible to get reliable information as to the date of infection of syphilis in the female.” Simply put, the women were excluded from the purported “research” by virtue of their different physiological makeup, although both women and children were included as participants in the earlier Rosenwald Demonstrations. The truth of the matter conceivably lies in the decision to take advantage of the Rosenwald Demonstrations' goodwill to secure participants for a study on the effects on untreated syphilis, while misleading them to believe that they were in fact receiving treatment. Gray points out that “[f]ield hands *176 and manual workers were sought out by Vonderleher so that he would not have to waste his Wasserman [sic] tests on women.” The Wassermann test, generally speaking, refers to a series of blood tests that the government doctors administered to diagnose syphilis and assess its progress.

To date, “[b]iomedical research has concentrated on the investigation of health problems as they affect men - not surprisingly, largely explored in male research subjects. Until quite recently, bioethical analysis has failed to recognize and analyze the ethical issues inherent in this situation.” The inclination to overlook women in research is necessary to maintain a status quo of “second-class cititzenry” healthcare, thereby resulting in unethical conduct. Even in light of “[s]candals such as the Tuskegee Syphilis Trials [which] motivated efforts to protect research subjects by excluding them from research” based upon a lack of informed consent, the current discourse on the Tuskegee Syphilis Study fails to “ask the women of color question” and its implications for women and research today. As Merton points out, “[a]lmost nowhere in the massive bioethical literature on experimentation is there any reference to a right to be considered for a research protocol, or to a corresponding duty to avoid unjustly or irrationally excluding those who might wish to be subjects.”

The omission of women from the protocol in the Tuskegee Syphilis Study in 1932 foreshadows the medical “her-story” of marginalization that currently exists. It has been argued that “medical and other health care practices should be reviewed not just with regard to their effects on the patients who are directly involved but also with respect to the patterns of discrimination, exploitation, and dominance that surround them.” This is especially true in the Tuskegee Syphilis Study, due to the known effects of the disease, which can be acquired through sexual activity or congenitally from an infected mother.

A reproductive justice lens will allow one to acknowledge the *177 biomedical significance of the Tuskegee Syphilis Study to current issues of omitting women in research protocols. According to Lorretta Ross, National Coordinator, SisterSong Women of Color Reproductive Health Collective, the development of the term “Reproductive Justice” evolved from a definition of:“reproductive health integrated into social justice.” Reproductive justice, at that time, was defined as “reproductive health integrated into social justice.” Reproductive justice was further developed as an intersectional theory emerging from the experiences of women of color whose communities experience reproductive oppression. It is based on the understanding that the impact on women of color of race, class and gender are not additive but integrative, producing this paradigm of intersectionality. The concept of reproductive justice was further elaborated in a seminal paper written by Asian Communities for Reproductive Justice in 2005. ACRJ strengthened the Reproductive Justice analysis by analyzing the three main frameworks for fighting reproductive oppression: 1) Reproductive Health which deals with service delivery, 2) Reproductive Rights which address the legal regime, and 3) Reproductive Justice which focuses on movement building.

By applying a reproductive justice lens to a reexamination of the Tuskegee Syphilis Study, one ascertains that the government denied the women directly impacted by the study the right to not bear a child with congenital syphilis, because of the government doctors' intention to study the effect of untreated syphilis on men (the husbands and intimate partners of the women who contracted syphilis) and, unbeknownst to them, passed the disease on to their unborn children.

The reproductive justice lens lays the foundation for a transformative remedy to address African American distrust of the public health care system. The transformative nature of medicine and provision of medical services will be manifested when medical schools reframe the discussion of the women affected by the Tuskegee Syphilis Study as mere collateral consequences to the center of discourse when teaching the biomedical significance of women. By de-marginalizing the presence and narrative of women of color in medical research, medical schools will meet their *178 mandates of incorporating a culturally competent curriculum, which will undoubtedly transform the field of medicine, medical research, and the provision of medical services.