This dissertation explores the routinization of prenatal genetic testing in the United States’ precision medicine landscape. It investigates how these technologies shape perspectives on reproduction, health, and disability, and probes the ethical implications of their widespread use. I ask, how does the “appropriate” use of prenatal genetic technologies come to frame certain existences as meaningful and worthwhile while others are seen as unwanted and less valuable? I also explore the role of experts in both implementing and interpreting these technologies during medical research as well as patientcare. The study reveals how the routine use of prenatal genetic technologies positions disability as an undesirable social harm, narrowing our tolerance of difference and amplifying the imperative to use these tools to reproduce ‘judiciously.’

The first empirical chapter delves into Wrongful Birth and Life legal disputes in prenatal testing. It reveals how courts have ushered the technological imperative around prenatal genetic tools and enshrined disability as an unwanted private burden. In the second, I unpack the social making of genetic diagnostic categories. Focusing on sex chromosome aneuploidies, this chapter offers an in-depth examination of gendered pathology and the medicalization of genetic variations as ‘abnormal’ existences. The final empirical chapter centers on experts and expertise. It illuminates how reproductive physicians and genetic counselors organize expertise and responsibilities around prenatal testing, emphasizing possible transformations in which groups are influencing the forefront of genomics and equitable patientcare.

I employ mixed qualitative methods. I conducted in-depth interviews (20 with reproductive physicians, 20 with genetic counselors, and 20 with patients). Further, I completed ethnographic observations at professional genomics conferences, a genetic counseling master’s program, and consultations between patients and genetic counselors. I also relied on content analysis, using a Python-assisted web scraper to gather text-based exchanges about prenatal genetic testing on Reddit. Finally, I conducted archival research on Wrongful Birth and Life cases from 1963-2021.

There are significant consequences surrounding genetic technologies, systematic de-selection of disability, reproductive pressures, and the enduring history of eugenics. As prenatal genetic innovations become more precise, capable, and accessible, it is essential to implement them toward a more inclusive and just society. To be sure, prenatal genetic testing is not inherently harmful; rather, harms result from how we systematically employ these tools to treat disability as objectively unwanted. In that vein, this dissertation is an endeavor to pave the way for a more equitable and compassionate future in prenatal testing, where inclusive social infrastructures parallel technological innovation.

CRISPR and other methods of gene editing have captured the public imagination, spurring countless lectures, articles, and think pieces about how this technology can shape humanity. Many of these conversations are concerned primarily with the seemingly boundless “potential” of human gene editing to both treat diseases in existing patients and alter the genes of future children and generations. The ethical implications of using technology to permanently alter the human genome are evident and often mentioned. But many discussions downplay the serious societal and ethical implications of human gene editing when they fail to assess it within the context of existing assisted reproductive technologies (ARTs) and the fertility industry. This brief extends public and policy discussions that contextualize human gene editing as an ART with scientific limitations and grave and irreversible social and political consequences.

This brief argues that the implications of human germline editing should be understood in the context of ARTs and the for-profit fertility industry—one that reproduces and exacerbates the health and social disparities created by already existing reproductive technologies. There are important synergies that need to be considered. ARTs allow people to have children. Yet, germline editing would let them control what kinds of children to have. This entanglement suggests that the debate concerning the ethical implications of using CRISPR in reproduction must be situated within existing conversations regarding ARTs. Viewing CRISPR through this lens allows us to critique the goals of germline editing and to better understand how this new technology might not only exacerbate existing social and ethical dilemmas around ARTs, but also create entirely new challenges.