Institute for Genomic Data Governance https://igdg.org/ Research and policy at the intersection of genomics and data. en Mon, 02 Nov 2026 12:29:42 GMT From Silos to Federation: Five Working Papers Challenging the Next Generation of NIH Data Sharing https://igdg.org/five-working-papers-nih-genomic-data-sharing-debate/ https://igdg.org/five-working-papers-nih-genomic-data-sharing-debate/ 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. Institute for Genomic Data Governance Working Papers Mon, 02 Nov 2026 12:11:22 GMT Reading the Fine Print on Your DNA: What Americans Actually Control Over Their Genomic Information https://igdg.org/reading-fine-print-genomic-data-rights-america/ https://igdg.org/reading-fine-print-genomic-data-rights-america/ 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. Institute for Genomic Data Governance Policy Explainers Mon, 02 Nov 2026 12:11:22 GMT