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Learn how GA4GH helps expand responsible genomic data use to benefit human health.
Health Data Sharing, Privacy, and Regulatory Forum (formerly GDPR Forum)
Data protection laws around the world are vital to protect peoples’ privacy and regulate who has access to data, and how they use it. These frameworks also present challenges to sharing and re-using data for research purposes. The GA4GH Regulatory & Ethics Work Stream (REWS) publishes regular briefs to explore and discuss established and emerging data-related regulations, such as data protection laws, and their impact on data sharing. Explore all briefs below. Co-editors: Adrian Thorogood and Fruzsina Molnár-Gábor
Policy Brief: children’s data protection and genomic research (part 2: consent and lawful bases)
Policy Brief: children’s data protection and genomic research (part 1: general considerations)
Policy Brief: navigating the data sharing implications of national security policies
Policy Brief: The European Health Data Space — From approval to national implementation
Policy Brief: GDPR going forward — prospects of resuming transatlantic data sharing
Policy Brief: the EU Data Governance Act — new pathways for consented reuse of information
Policy Brief: data protection implications of publishing metadata to enable discovery
Policy Brief: what constitutes an "international data transfer"? Recent developments by the EDPB and implications for genomic and health data sharing
Policy Brief: processing the data of the deceased for scientific research purposes — looking beyond the GDPR?
Policy Brief: navigating international data transfers under GDPR — impediments facing US federal science agencies and research universities
Policy Brief: finding a route out of the impasse? Ordering the secondary processing of already gathered data in a code of conduct
Policy Brief: international “onward” transfers of genomic data under the EU Standard Contractual Clauses
Policy Brief: transferring genomic and health-related data following Schrems II
Policy Brief: storage limitations for genomic and health-related personal data
Policy Brief: understanding the extraterritorial effect of the GDPR for genomic and health-related research
Policy Brief: the interplay between the Clinical Trials Regulation and the GDPR
Policy Brief: are university-employed scientific researchers "Data Controllers" for the purposes of the GDPR?
Policy Brief: what records of processing does the GDPR require health sector organisations to maintain?
Policy Brief: standard contractual clauses for transferring genomic and health data (March 2020 bonus brief)
Policy Brief: standard contractual clauses — opinion of the Advocate General in Schrems II
Policy Brief: “at least one” legal basis for processing under the GDPR — clarifying Article 6(1)
Policy Brief: is "consent for genomic and health-related research" specific enough to constitute a valid consent under the GDPR?
Policy Brief: the Data Protection Impact Assessment and genomic health research
Policy Brief: codes of conduct under the GDPR — a useful but challenging tool to enable responsible international data sharing
Policy Brief: how can researchers approach international data transfers under the GDPR?
Policy Brief: what is the difference between research ethics consent and data protection consent?
Policy Brief: what information can research participants demand under the GDPR?
Policy Brief: what specific protections apply to health-related, genetic, or biometric data?