Abstract
Gene editing is a novel and revolutionary technology eagerly awaited by the genetics community. Clustered regularly interspaced short palindromic repeats (CRISPR)-Cas9 is able to make specific changes to genetic sequences, a process that has the potential to benefit medicine and public health (Doudna and Charpentier, 2014). Scientists are currently researching ways to utilize the technology to fight infectious diseases such as malaria and Lyme disease (Vigliotti and Martinez, 2018). CRISPR works to reduce infectious diseases by “gene-editing vectors of disease,” which are the routes of transmission (Vigliotti and Martinez, 2018). Other applications of CRISPR include targeting influenza to learn more about the replication and mutation process and how to prevent it, along with xenotransplantation for children that is the practice of using nonhuman organs for organ transplants.
Despite its potential, and perhaps because of its promise, this technology prompts a burgeoning conversation around ethics in the scientific community. There has been great consideration placed on the ethics of gene editing with a strong focus on vulnerable populations. There are many areas of controversy when looking into gene editing, one of them being the enthusiastic expectations of the scientific community. One of the most prioritized concepts is the equitable utilization of CRISPR technology, especially concerning Black, Indigenous, People of Color and women. More specifically, in consideration of the historic abuse of medical technology, gene editing could be manipulated to support eugenics, a form of pseudoscience that attempts to justify the biased treatment, medical coercion, and systematic exploitation of racial and ethnic minorities, neurodivergent individuals, and individuals with disabilities. Therefore, to ensure that gene-editing technology is used safely and ethically, medical professionals, legislators, and researchers must contend with the historic and current manipulation of medical tools. Consequently, we will look to the history of birth control to analyze the dual legacy of help and harm of medical tools in the United States.
Although women's fight for bodily and reproductive autonomy is centuries old, we will focus on second-wave feminism, as the movement prioritized increasing access to birth control services, including abortion and voluntary sterilization. This era marked the Roe v. Wade court ruling, which protects the right and ability to access abortion. Although this development was largely positive, medical historian Alexandra Stern elucidates the limits of mainstream feminism's conceptualization of reproductive rights, stating “in theory, the advent of family planning resources and reproductive health clinics could provide millions of American women and men with heretofore scarce or nonexistent medical services. However, the increasing access to contraception overwhelmingly benefited middle-class White women” (Stern, 2005).
At the same time, doctors, enabled by state governments, employed birth control techniques against marginalized groups, namely poor women of color and individuals with disabilities, under the guise of public health. Many marginalized women were sterilized either by force or coercion. Despite the narrative that emphasized the objective importance of sterilization for the well-being of the American population, sterilization efforts perpetuated racist, classist, and xenophobic rhetoric that associated immigrants, low-income women, and women of color with welfare dependence, illegitimacy, and overpopulation. Moreover, Stern notes that forced sterilization was deeply rooted in antiblack racism, and coincided with desegregation efforts, marking attempts to maintain white supremacy as Jim Crow policies were abandoned.
Some may argue that these historic events have no bearings on present-day research and medicine. This claim is erroneous for two reasons. First, the legacy of medical abuse affects minority populations today. In a study on research participation in African American adults, Darcell P. Sharff and colleagues found that mistrust of the health care system emerged as a primary barrier to participation in medical research, writing “mistrust of medical research and the health care infrastructure is extensive and persistent among African Americans … illustrating that more than four centuries of a biomedical enterprise designed to exploit African Americans is a principal contributor to current mistrust” (Scharff et al., 2010). Second, the abuse of medical technology against marginalized communities is still present. Stern highlights that ∼1400 women were forcibly sterilized in California prisons between 1997 and 2010 (Stern, 2020). Moreover, forced and coerced sterilizations have been reported as recently as 2020 in immigration and customs enforcement detention centers (Manian, 2020).
In addition, given the American medical system's over-reliance on biomedicine and consequent neglect of robust public health infrastructure and social safety nets, an overemphasis on gene-editing technology could inadvertently contribute to eugenics. Again, birth control efforts provide a prescient example. Reproductive justice spaces heavily focus on the rights of women to access medications, tools, and technology to avoid or terminate a pregnancy. Although access to these resources is fundamental to reproductive rights, they eclipse another equally important tenant: the right to parent. Reproductive justice scholars Loretta Ross and Rickie Solinger argue that reproductive rights extend beyond the right to not have children, and also include the right to parent children in safe and healthy environments. Furthermore, reproductive justice asserts that the state “has an obligation to help create the conditions for women to exercise their decision without coercion and with social supports” (Ross and Solinger, 2017). In the absence of institutionalized reproductive justice, some women have abortions because they lack the financial means to support a child. In the Turnaway study, 40% of women identified financial constraints as a reason for seeking an abortion (Biggs et al., 2013). Here, birth control technology is not the culprit. Rather, it is a lack of resources that undermine women's right and ability to have and parent children. A similar fate threatens gene editing. Although the technology has an undeniable potential to alleviate the suffering of those with genetic conditions, this resource will not be viable or appropriate for every case. Therefore, it is essential that gene editing coexists with resources that support the management of genetic conditions.
Ultimately, ethics cannot be severed from biomedicine and medical technology. Birth control is an example of this. Although birth control is not synonymous with eugenics, it can easily be misused or manipulated to purposefully or inadvertently advance eugenics. Although birth control is an important resource for many women, we must also contend with its legacy of medical abuse. This history is not meant to deter the use of CRISPR and other gene-editing technology. Rather, this history should empower us to attain a higher ethical standard.