ELSIcon2022 Networking Session: Ethical Topics Associated with Population Genomic Screening

ELSIcon2022 • Networking Session • June 1, 2022

Kimberly Foss, Kate Saylor

This session was led by a genetic counselor and an ELSI researcher. Scientific advances have made genetic screening in unselected populations possible (and enticing), and early attempts at clinical programs have emerged across the country. These pilots aim to provide a clinical service, as well as to generate knowledge about implementation and prevalence/penetrance/expressivity in unselected groups. These programs raise numerous ethical questions ripe for discussion, including: What is the proper role of education or informed consent, and how can misconceptions of utility be avoided? How should equity in access to clinical programs and for research goals be promoted and evaluated? What are the obligations of program leaders to coordinate across programs to maximize generalizable knowledge? Is it ethical to provide non-actionable results? What is the obligation of a screening program to ensure access to medical management after concerning results? What ethical concerns are raised when pilot programs end? Considering ethical questions is essential to the design of early clinical programs and to assessing their outcomes. We aim to generate meaningful discussion regarding the implementation of genetic screening with consideration of the blurred line between research and clinical care.