Achieving Genetic Data Privacy Through Enforcement of Property Rights

Donna M. Gitter - Baruch College, City University of New York
Vol. 57
November 2023
Page 131

To protect genetic privacy, state legislatures have begun to invoke the language of property rights, declaring the information derived from DNA, and even genetic material itself, the “exclusive property” of its source. A few recent judicial decisions also recognize an individual’s property interest in the information derived from genetic material, with one state court denying a motion to dismiss a plaintiff’s conversion claim. The use of property rights to protect genetic privacy is due in part to the rise of direct-to-consumer genetic testing (DTC-GT), which has decoupled the receipt of genetic information from medical care, allowing third parties to access and use private genetic information without consent.

Notwithstanding their invocation of the language of property rights, however, legislatures and courts are circumspect in their application of property law principles to genetic data. Even those state genetic privacy statutes that designate genetic materials and information as property either lack a private right of action; impose criminal law penalties that establish a high burden of proof; and/or set forth statutory damages that are quite small in comparison with the profits earned by DTC-GT companies. Courts hearing cases regarding the misuse of DTC-GT have denied plaintiffs’ requests for class action certification, even as they acknowledge the challenges of determining the appropriate measure of actual damages given that genetic material and information are more valuable in the aggregate than severally.

This article offers a perspective on how to enhance state legislation regulating DTC-GT. Part I of this article discusses the rise in the U.S. of DTC-GT and its associated risks of privacy loss and discrimination. Part II examines the seminal judicial decisions from two to three decades ago holding that individuals lack property rights in their genetic material and the data derived from it. Part III considers U.S federal laws enacted in the last two decades relating to medical and genetic privacy, which are inadequate to protect consumers from the risks of genetic privacy violations associated with DTC-GT. Part IV explores the increase in state legislation relating to genetic data privacy, with a specific focus on state legislation referring to property rights. Part V analyzes two recent judicial decisions that demonstrate courts’ willingness to uphold plaintiffs’ rights under statutes that recognize their ownership of their genetic material and/or the information derived from it, even as these courts struggle to establish clear and effective redress of violations. Part VI concludes by suggesting methods to enhance state genetic privacy statutes, which reflect the continuing impact of normative views denying property rights in genetic material and its associated data.

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