Guardians of Genomic and Biometric Data: Governing Innovation, Privacy, and Equity in a Fragmented World
With Guest Lecturer Professor Dov Greenbaum
Presented by the Future of Law Lab
Abstract
The rise of direct-to-consumer genomic testing has transformed healthcare and research but also introduced critical challenges in data ownership, privacy, and governance. Recent breaches at 23andMe underscore the risks of centralized data control, exacerbated by a fragmented regulatory landscape. Narrow laws like the US’ Prohibition Against Data for Foreign Adversaries Act (PADFAA) and the EU Data Act’s extraterritorial reach fail to provide comprehensive safeguards.
Genomic data’s hereditary nature makes it uniquely sensitive, raising concerns over access, consent, and ethical repurposing, as seen in the Golden State Killer case. Even anonymized datasets carry re-identification risks, increasing vulnerabilities to misuse and discrimination.
Effective governance requires enforceable safeguards, public engagement, and technical solutions like differential privacy, federated learning, and encryption. A Genomic Bill of Rights could grant individuals control over their data and prevent exploitation, while adaptable governance structures ensure accountability as technologies evolve.
The decline of 23andMe illustrates the dangers of prioritizing profit over ethical responsibility. Treating genomic data as a shared public resource, not a commodity, aligns innovation with security, privacy, and trust. Without immediate action, misuse could deepen inequities and undermine public confidence in genomic technologies.
Dov Greenbaum
Dov Greenbaum is a practicing intellectual property attorney, an Associate Professor in the Department of Molecular Biophysics and Biochemistry at Yale University, a Professor at the Harry Radzyner Law School at Reichman University, and a-non resident fellow at Stanford University's Center for Law and the Biosciences. In addition to his many legal and scientific papers he has also written non-technical lay pieces relating to the ethical legal and social implications of science in general and genomics in particular
Dov has his law degree from the University of California, Berkeley where he also received a Law & Technology Program Certificate from the Berkley Center for Law and Technology. Dov has a PhD in Genetics from Yale University.
