ELSI Friday Forum

ELSI Friday Forum | September 11th, 2026 | 12PM ET/ 9AM PT via Zoom
Beyond Consent and Controlled Access: Governance of Human Biodata Repositories and Global Data Sharing

Moderator: Pilar Ossorio, PhD, JD
Presenters: Joy Zhang, PhD, MSc, Keymanthri Moodley, D.Phil, MD

The mechanisms we rely on to legitimate the sharing of human health and genomic data such as controlled access, accreditation and data use agreements; data protection law, de-identification and formal consent are being outpaced by the scale and geopolitics of the transnational genomic research economy. This forum examines two recent episodes that expose their limits: 1) the sale of de-identified data from the UK Biobank on a commercial platform in China after three accredited institutions violated their access agreements and 2) public objection to a multibillion-dollar "data-for-funding" agreement between the US and Kenya proposed to trade healthcare investment for access to de-identified national health data.

These cases raise questions about the governance of global data sharing. Who sets the terms for data sharing, who bears downstream risks and derives benefit, and whose consent or sovereignty is recognized? The panel asks what trustworthy data sharing requires when data moves across borders under conditions of inequality, and what would have to change, in design and in practice, for global health and genomic data sharing to be trustworthy?