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Online Vol. 106, Issue 3

Cornell Law Review Online

Unequal Representation: Women in Clinical Research

Allison M. Whelan

Associate, Covington & Burling LLP, Washington D.C.; J.D., University of Minnesota Law School; M.A. Bioethics, University of Minnesota.  Special thanks to Professor Michele Goodwin and the editors of the Cornell Law Review.  The views expressed in this article are the author’s and do not represent those of any past, current, or future employer.

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2 Apr 2021

The underrepresentation of women in clinical research throughout history is a well‑recognized problem. Progress has been made, but there is still room for improvement and it must be recognized that not all women have been or continue to be treated equally in the context of clinical research. On the one hand, there is a long history of paternalism and lack of respect for women’s autonomy that has resulted in the exclusion of women from research, particularly pregnant women and women of childbearing potential. The potential consequences of this are many, including harm to women’s health because diseases and treatments can affect men and women differently.

On the other hand, there is also a long history of women of color being unknowingly or unwillingly subjected to unethical medical experiments and procedures. This includes experimentation during human enslavement, carried out most famously by doctors like James Marion Sims, who abused and terrorized Black women who he rented as slaves.1See infra section I.B.1. He performed myriad gynecological experiments on these women, often without providing them any anesthesia. It is a glaring reflection on the multiple cruelties of slavery as well as the American experience of medical experimentation.

However, the horrors experienced by women of color in the medical setting are far more extensive, spanning into the nineteenth, twentieth, and twenty‑first centuries. Famously, throughout the Jim Crow period, Black women became the unwitting subjects of eugenics platforms, legally blessed by the 1927 Supreme Court decision Buck v. Bell.2274 U.S. 200 (1927) (upholding a Virginia law authorizing a state’s right to forcibly sterilize a person deemed unfit to procreate). Buck was considered a victory for America’s eugenics movement, “deliver[ing] a clarion call to Americans to identify those among them who should not be allowed to reproduce—and to sterilize them in large numbers.” Adam Cohen, Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck 2 (2016). In Mississippi, the frequency and normalization of sterilizations are revealed by the term “Mississippi Appendectomy” becoming associated with the practice.3See Harriet A. Washington, Medical Apartheid 202‑06 (2006). The term reveals the mistruths told to Black women and girls, as well as the callousness and neglect used to obtain consent for the real surgeries taking place. Most recently, during the COVID-19 pandemic, allegations of sterilizations at immigrant detention centers only further the concerns related to these matters, particularly as they affect vulnerable, poor women.4See infra note 56. This history has contributed to women of color’s distrust in the government, research institutions, and the medical system in general.

These two historical wrongs are distinct, yet related in that they both harm women’s health, dignity, and autonomy. As this Article will discuss, much progress has been made to increase women’s overall representation in clinical trials, but there is far more work to be done with respect to the representation of women of color, and people of color in general. The primary focus of this Article, therefore, is the inadequate representation of women of color, and people of color more generally, in clinical trials.

To read more, please click here: Unequal Representation: Women in Clinical Research.

References

References
1 See infra section I.B.1.
2 274 U.S. 200 (1927) (upholding a Virginia law authorizing a state’s right to forcibly sterilize a person deemed unfit to procreate). Buck was considered a victory for America’s eugenics movement, “deliver[ing] a clarion call to Americans to identify those among them who should not be allowed to reproduce—and to sterilize them in large numbers.” Adam Cohen, Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck 2 (2016).
3 See Harriet A. Washington, Medical Apartheid 202‑06 (2006).
4 See infra note 56.
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