Calculating Risk: Pre-implantation Genetic Testing and the New Eugenics

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Abstract

Despite spawning dystopian realities, eugenics has always had utopian longings at its core. By encouraging reproduction among people of certain classes, races, and abilities, and prohibiting reproduction from those deemed “unfit,” eugenics operates through the promise of a more perfect future. This paper considers the so-called “new eugenics” of assisted reproductive technologies, arguing that unlike earlier, state-sponsored, versions of eugenics the new eugenics are new precisely because they are delinked from the state and instead tied to the market. In other words, the new eugenics is supposedly more about choice than coercion, allowing those who have access to expensive reproductive technologies the chance to improve the lives of themselves and their children.

While much of the debate focuses on the specter of creating “designer babies” with genetic enhancements, in this paper I focus on the use of the new eugenics to mitigate risk. Specifically, I look at pre-implantation genetic diagnosis (PGD) done to select out BRCA mutations – mutations known to increase the carrier’s risk of developing breast, ovarian, and other cancers. Known carriers of BRCA mutations can choose to undergo IVF, have the resultant embryos screened for the BRCA mutations, and only implant embryos that are mutation free. For those who have watched genetic cancers devastate generations of their family, such technologies represent an important way to delink their destiny, and the destiny of their progeny, from biology. This paper does not intend to question the decisions (or rights) of individuals to make such a choice, but instead examines the rhetoric around PGD for people living with BRCA mutations.

Taking a disability studies approach that mines how the rhetoric around PGD is embedded within what Alison Kafer names “curative time,” this paper poses a series of questions about managing the risks of the present to perfect the future. First of all, there is the fact that only a certain subset of privileged people can access this technology in the first place. Second, given the many unfolding crises of our moment, how might we think about the illusion of control offered by PGD? What does it mean to try and “save our children” before they are even born? What does it tell us about notions of a “good life,” and what are the lives and ways of being that are disavowed by this curative approach to risk and potential disability? In opening up these questions I do not intend to resolve any of them, but rather to think about the visions of the future – perfectible or not – that they might present or foreclose.

Author

• Asha Nadkarni, University of Massachusetts Amherst