Chasing a runaway train: disability policy grapples with accelerated prenatal genetic technologies

Policies and practices around prenatal testing including the highly commercialized noninvasive prenatal genetic testing (NIPT) illuminates discourse related to disability, including the human rights of people with disabilities, but also stigma and negative stereotypes. NIPT has changed the landscape of prenatal testing because it is a screening, not testing, tool that is considered safer than invasive methods and can be administered in the first trimester using a small sample of the mother’s blood. Since genetic literacy and access to testing varies internationally, the cultural context of these advancements in technology must be considered alongside the backdrop of disability policy. Advancements in prenatal testing have accelerated faster than governments and societies have been able to reach consensus on their boundaries. There are multiple ethical implications and the potential for adverse societal outcomes. This chapter will address these as well as recommendations for policymaking through a disability justice lens.