Data protection: sharing genetic data for biomedical research

Safe and effective novel therapies that meet the health needs of diverse populations rely on researchers having access to large quantities of data. Much of this data will be genetic - taken from the genome of individuals. Individual level human genetic data nearly always qualifies as ‘personal data’ and is subject to stricter data protection regulations. 

But countries vary as to how they regulate sharing and use of personal data. Regulatory approaches are guided by values and norms and entrenched policy frameworks specific to that country. While a universal framework embraced by all jurisdictions may sound desirable, it is unlikely to be achievable. However, there are growing signs of convergence in many laws around the world, if not complete alignment. 

How to meet this challenge and achieve responsible and equitable data sharing for biomedical research across jurisdictions was the topic up for discussion at the webinar co-organised by The University of Hong Kong Centre for Medical Ethics and Law (CMEL) and the PHG Foundation. Over 140 participants across Asia, Europe and America registered to attend, hear the perspectives of the expert speakers and participate in the discussion.

On the panel were:

• Dr Calvin Ho, Associate Professor of Law & Co-Director of the Centre for Medical Ethics and Law, The University of Hong Kong, Hong Kong, China
• Dr Haihong Zhang, Office Director of Peking University Human Research Protection Programme, Health Science Center, Peking University, China
• Dr Colin Mitchell, Head of Humanities, PHG Foundation, University of Cambridge, UK
• Prof Yann Joly, Research Director, Centre of Genomics and Policy (CGP) and Professor, Department of Human Genetics, Faculty of Medicine, McGill University, Canada

Personal data protection regimes and the sharing of human genetic data for research

You can watch the full webinar on the CMEL website or, if you are short of time, read the handy summary here.