From the 1996 Bermuda principles to the recently issued NIH Genomic Data Sharing (GDS) policy, there is a growing belief that the public dissemination of research data can enhance scientific inquiry and is an important component of the scientific progress. Nevertheless, how to appropriately manage the flows of genomic data and to encourage data sharing yet respond dutifully to human subjects’ protections and privacy concerns remains a challenge. In addition, how to constitute a responsible approach to balance the risk and usability of secondary data and institutionalize that demand by improving public participation are issues worth further discussion. This presentation deals with legal and regulatory challenges of genomic data sharing. It calls upon a new form of governance which focuses not only on transparency and social accountability, but also on community participation that goes beyond traditional approach of privacy safeguards via individual consent and anonymity of identifiable personal information.

About the speaker:

Dr. Chih-hsing Ho is Assistant Professor/Assistant Research Fellow at Academia Sinica, Taiwan. Her research focuses on the nexus of law and medicine in general, with particular attention to the governance of genomics and newly emerging technologies, such as biobanks, big data and artificial intelligence (AI). She is currently a PI in law for a health cloud project in Taiwan and is responsible for designing an adequate regulatory framework for the secondary use of personal data and health-related data linkage. She holds a Ph.D. in law from the London School of Economics (LSE) where she was an Olive Stone Scholar and an awardee of Morris Finer Memorial Fellowship. She obtained her first law degree from Taiwan, and later received her LLM from Columbia Law School and a JSM from Stanford University. Before moving back to Taipei in 2014, she had been working at the Centre for Medical Ethics and Law (CMEL) at the Faculties of Law and Medicine, University of Hong Kong. Her works appear in many renowned international journals, such as BMC Medical Ethics, Frontiers in Genetics, Asian Bioethics Review, and the Journal of Law, Information and Science. Since 2016, she has served as Associate Editor for the Editorial Board of ELSI in Science and Genetics- Frontiers.