Institute for Genomic Data Governance Research and policy at the intersection of genomics and data.

Institute for Genomic Data Governance

Research and policy at the intersection of genomics and data.

Latest Articles

From Silos to Federation: Five Working Papers Challenging the Next Generation of NIH Data Sharing
Working Papers

From Silos to Federation: Five Working Papers Challenging the Next Generation of NIH Data Sharing

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.
Reading the Fine Print on Your DNA: What Americans Actually Control Over Their Genomic Information
Policy Explainers

Reading the Fine Print on Your DNA: What Americans Actually Control Over Their Genomic Information

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.