Severity at the Gates: Or Why Prevention is the Aim of Reproductive Genetic Carrier Screening

Abstract

Reproductive autonomy is usually described as the aim of publicly funded reproductive genetic carrier screening. I argue that this misdescribes the practice. These programs do not include conditions because any information might support choice. They include them because severity sets the scope. The aim of these programs, therefore, is prevention: not preventing the birth of particular persons, but offering a preventive response to the serious suffering associated with some severe inherited conditions. Reproductive autonomy, however, is the legitimate means by which a liberal program may pursue that aim, through information, counseling and voluntary decision making. That pursuit must satisfy what I call a liberal proviso, so that prevention does not become pressure, stigma or eugenic state steering. Naming prevention also enriches the disability critique. It makes both inclusion and exclusion morally visible and warranting justification, since both express judgments about which forms of suffering warrant collective response.