Legal and Policy Challenges to Privacy in the Post-Genomic and Post-Dobbs Era

This ELSI Friday Forum took place on June 9, 2023.

Rapid growth in genetic understanding presents challenges for expectant parents, now
complicated by the Dobbs decision’s removal of federal constitutional protection for private reproductive decision-making. This panel will discuss two emerging issues for genetic information after Dobbs: prenatal gene therapy and law enforcement access to DNA repositories from residual newborn screening. Alta Charo, bioethics consultant and professor emerita at the University of Wisconsin, considered the novel possibility of prenatal gene therapy. Complicated by issues of prenatal surgery, prenatal gene therapy adds questions about risk and benefit for first in human studies using a rapidly evolving technology.  After Dobbs, the growing absence of legal abortion affects the risk/benefit calculus for parents in accepting this intervention, if termination is no longer available in the event of a failed effort that threatens to result in a severely impaired newborn. Natalie Ram, health law expert at the University of Maryland, considered how increasing interest in expanding newborn screening to whole genome or whole exome sequencing risks making this resource that much more attractive for law enforcement. Privacy protections are often lacking, police operate without significant legal constraints on their use of consumer genetic data, and some states offer inadequate protection from access for newborn screening resources. Legislation in Maryland on consumer genetics and in Iowa on newborn screening samples are models for policymakers in regulating law enforcement use of these genetic resources.

• Natalie Ram, JD (University of Maryland)
• R. Alta Charo, JD (University of Wisconsin-Madison)
• Moderated by Leslie Francis, PhD, JD (University of Utah)