The Paradox of Autonomy: Navigating the Control of Genetic Information

Amy Knight Burns, Stanford Law School

Abstract

Genetic information is shared in families. This means that family members have the ability to reveal each other’s genetic information to a varying degree depending on the nature and closeness of the genetic relationship. Consequently, individuals cannot retain both the right to keep their genetic information private and the right to use their own genetic information as they wish. Our constitutional law is largely focused on individuals; this paradox thus sits uneasily in our legal system. Commentary on genetics and law has centered around particular areas where problems arise, or on the general impossibility of complete genetic privacy, without recognizing the overarching paradox posed on the level of individual rights by the shared nature of genetic information. Three particular contexts illustrate the paradox and its usefulness as a tool for evaluating solutions: general privacy claims (including dignitary harms and economic harms stemming from genetic discrimination in insurance and employment); scientific research and clinical settings; and forensic use of genetic information, including familial searching of DNA databases. Though it would be impossible to fully resolve the paradox in any legal regime, greater attention must be paid to the competing values implicated in any rule about genetic information. Recognizing the paradox is a key step in shaping policy to best balance the interests of the individual with the inherently non-individual nature of genetics.