Research and policy at the intersection of genomics and data.
When a consumer dies, their genetic data does not simply vanish — but who may lawfully access it remains remarkably unclear. This explainer maps the terms-of-service landscape, the estate planning gap, and the state laws beginning to fill the void.
This working paper reviews five incidents involving genetic databases — from insider misuse to law enforcement searches — and the policy responses each provoked. It concludes with a threshold analysis: what would the next incident have to involve before Congress moves on a federal genomic privacy statute?
As NIH implements its 2024 genomic data-sharing requirements, a wave of working papers and comment letters is pressing for revisions. We summarize five proposals—spanning tribal sovereignty, federated query architectures, and consent infrastructure—and assess what each would mean in practice.
No single federal statute governs who holds your genome once it leaves your body. This plain-language guide untangles HIPAA, GINA, state privacy laws, and consumer contracts—and offers a practical checklist for anyone asked to share their DNA.