Introducing the GA4GH GDPR & International Health Data Sharing Forum

7 Sep 2018

A new task team of the GA4GH Regulatory and Ethics Work Stream, the GDPR and International Health Data Sharing Forum, will begin publish monthly “GDPR Briefs” that answer important questions about the GDPR’s impact on various aspects of international health research and genomic and health-related data sharing, and that further explore the various issues raised in an initial Primer, released on September 4.

The General Data Protection Regulation (GDPR), which took full legal effect across the European Union (EU) on 25 May 2018, has a number of implications for international health research involving the collection, use, and cross-border sharing of people’s personal data. Such research includes genomics research. In October, a new task team of the GA4GH Regulatory and Ethics Work Stream, the GDPR and International Health Data Sharing Forum, will begin publish monthly “GDPR Briefs” that answer important questions about the GDPR’s impact on various aspects of international health research and genomic and health-related data sharing.

An introductory primer was released on September 4 highlighting ten key areas of the GDPR that affect international health research and data sharing: territorial scope, transparency and accountability, “Data protection by design” and data protection impact assessments, data protection impact assessments, data Protection Officers, consent, processing special categories of data, data subject rights derogations, secondary use, International data transfer. The forthcoming GDPR Briefs will expand on the discussion of these and other topics raised in the Primer.

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See all previous briefs.

Please note that GDPR Briefs neither constitute nor should be relied upon as legal advice. Briefs represent a consensus position among Forum Members regarding the current understanding of the GDPR and its implications for genomic and health-related research. As such, they are no substitute for legal advice from a licensed practitioner in your jurisdiction.