Late-onset diseases and patient education: additional considerations for polygenic risk score regulation.

Abstract

In a recent article, Haining et al outline several ethical and regulatory considerations for polygenic risk scores (PRSs), which may expand current embryonic screening to include polygenic diseases and non-disease traits. I argue in this response that the authors overlook a few crucial issues that nations should address. For adult-onset diseases, regulations must not only account for predictive accuracy of PRSs but also establish the precise circumstances that warrant testing-such as a disease's severity and the average age at which symptoms manifest. I later stress the need for more consideration of how to educate patients on manageable diseases that their embryos are at risk of later developing. Required information must correct social biases without compromising genetic counsellors' impartiality. Drawing on global approaches to other embryonic genetic tests, I advocate for frameworks that protect patients' autonomy while addressing the unique uncertainties posed by PRSs.