Event Description
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. 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?
Event Information:
Free and open to the public; registration required. For more information, please visit the event webpage.
Hosted by the Center for ELSI Resources and Analysis at Columbia University as part of the ELSI Friday Forum series.
