GDPR and International Health Data Sharing Forum

Please find below a compendium of all of the GDPR Briefs from the Global Alliance for Genomics and Health.

GDPR & International Health Data Sharing Forum
The GA4GH GDPR Forum publishes 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 the GDPR Primer.

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Number

Date

Title

Author(s)
40 11-2022 The EU Data Governance Act: New Pathways for Consented Re-Use of Information Miranda Mourby
39 06-2022 Data protection implications of publishing metadata to enable discovery Adrian Thorogood
38 04-2022 Federated analysis for responsible data sharing under the GDPR Melissa Cline
37 02-2022 What constitutes an ‘international data transfer?’ Recent developments by the EDPB and implications for genomic and health data sharing Mikel Recuero Linares
36 12-2021 Processing the Data of the Deceased for Scientific Research Purposes: Looking Beyond the GDPR? Pilar Nicolás
35 10-2021 Navigating international data transfers under GDPR: impediments facing US federal science agencies and research universities Robert Eiss
34 08-2021 The Role of the European Data Protection Board in Interpreting the GDPR Michael Beauvais, Fruzsina Molnar-Gabor
33 06-2021 Familial Genomic Data and the GDPR Colin Mitchell, Alison Hall
32 05-2021 Finding a route out of the impasse? Ordering the secondary processing of already gathered data in a Code of Conduct David Townend, Birgit Wouters, Nina Stahl
31 02-2021 The Public Interest and the GDPR Michael Beauvais
30 12-2020 International “onward” transfers of genomic data under the EU Standard Contractual Clauses Phil Bradley-Schmieg
29 11-2020 The Concept of Personal Data in the GDPR Alexander Bernier
28 10-2020 Joint data controllership in the genomics context Colin Mitchell, Johan Ordish, & Alison Hall
27 09-2020 Transferring genomic and health-related data following Schrems II Fruzsina Molnar-Gabor & Michael Beauvais
26 08-2020 Storage limitations for genomic and health-related personal data Regina Becker
25 07-2020 Understanding the extraterritorial effect of the GDPR for genomic and health-related research Michael Beauvais
24 06-2020 The interplay between the Clinical Trials Regulation and the GDPR Irith Kist
23 05-2020 The Finnish Secondary Use Act 2019 Tom Southerington
22 05-2020 Are university-employed scientific researchers ‘Data Controllers’ for the purposes of the GDPR? David Townend
21 04-2020 What Records of Processing Does the GDPR Require Health Sector Organizations to Maintain? Alexander Bernier
20 03-2020 Cloud Computing Ruth Boardman
19 03-2020 Standard Contractual Clauses for Transferring Genomic and Health Data Fruzsina Molnar-Gabor
18 02-2020 Standard Contractual Clauses: Opinion of the Advocate General in Schrems II Michael Beauvais & Johan Ordish
17 01-2020 “At Least One” Legal Basis for Processing Under the GDPR: Clarifying Article 6(1) David Townend
16 12-2019 Is ‘Consent for Genomic and Health-Related Research’ Specific Enough to Constitute a Valid Consent Under the GDPR? Edward Dove
15 11-2019 Withdrawing Consent to Data Processing Under the GDPR Michael Beauvais
14 10-2019 Japan obtains the first adequacy agreement under the GDPR Handi Xu, Yann Joly, & Jennifer Stoddart
13 09-2019 The Data Protection Impact Assessment and Genomic Health Research Alexander Bernier & Jasper Bovenberg
12 08-2019 Codes of Conduct under the GDPR: A Useful but Challenging Tool to Enable Responsible International Data Sharing Edward Dove
11 07-2019 Are pseudonymised data within the GPDR’s scope? Mark Phillips
10 06-2019 How is Article 89 implemented across the EU/EEA? Ruth Boardman & Fruzsina Molnar-Gabor
09 05-2019 How can researchers approach international data transfers under the GDPR? Edward Dove, Robert Eiss, & Jennifer Stoddart
08 04-2019 When can I rely on broad consent for research? Mark Phillips
07 03-2019 What is the difference between research ethics consent and data protection consent? Edward Dove
06 02-2019 What information can research participants demand under the GDPR? Mark Phillips
05 01-2019 Automated Decision-Making and Profiling Mark Taylor
04 12-2018 What specific protections apply to health-related, genetic, or biometric data? Alison Hall & Johan Ordish
03 11-2018 To Whom Does the GDPR Apply? Edward Dove
02 10-2018 Can Genomic Data Be Anonymized? Mark Phillips
01 09-2018 Ten Ways the GDPR Impacts International Health-Related Data Sharing Edward Dove & Mark Phillips