109 Iowa L. Rev. 1219 (2024)
Abstract
“Knowledge is power,” so the saying goes. But does that always prove true? What if knowledge comes without the power or resources to act? What if knowledge is unwanted and uninvited?
Significant advancements in genetics and genomics have thrust these and other difficult questions into the professional and public discourse. These developments include “pediatric predisposition genetic testing” (“PPGT”), a term used in this Article to describe genetic testing performed on a minor with parental consent to either determine with certainty or predict the risk that the minor will develop an adult-onset disease.
PPGT pits parental rights against children’s rights in unique and unprecedented ways. American law and tradition have long recognized the rights of parents to consent to myriad types of healthcare services for their children, presuming that parents act in their children’s best interests. But PPGT raises questions about that presumption. Problematically, PPGT may impose unwanted information on nonconsenting children—information those children must live with for the rest of their lives. Too often, children become pawns in larger sociopolitical battles fought primarily between parents and the state, with the children’s rights and interests cast aside. With PPGT, where science has outpaced law and policy, children’s rights face subordination yet again.
To mitigate harm and protect children’s rights in this “age of genetics,” this Article argues for the development of a novel theoretical framework: a “right to future privacy.” In doing so, it eschews the existing jurisprudence’s myopic focus on parental rights and parent-state conflicts and proposes a framework that accounts for children’s privacy and autonomy amid fast-developing, and often under-regulated, technologies like PPGT. At a time when privacy rights are threatened by myriad sources, this Article reaffirms and reinvigorates the value of children’s lifelong genetic and personal privacy.