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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)
Publishes regular briefs exploring laws and regulations, including data protection laws, that impact the sharing genomics and related health data
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. Read past briefs, or submit ideas for future blog posts.
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Benefits
- Helps the community stay up to date on important topics by exploring data-related regulations around the world and their impact on data sharing.
- Provides clarity (in the form of briefs) on complex issues related to health data sharing and privacy
Target users
Researchers, clinicians, data custodians, data access committees, ethics review committees, data protection authorities, funding agencies, public, and security officers
Image summary: These briefs discuss various impacts of the General Data Protection Regulation (GDPR) on genomic and health data sharing.
THEME
CATEGORY
TYPE
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Work Stream
Product Leads
- Fruzsina Molnár-Gábor
- Adrian Thorogood
Staff Contact
Publications
Community resources
Dive deeper into this product! Numerous jurisdictions are establishing or strengthening their data protection frameworks or other rules that impact the governance of genomic and health-related data. Data protection laws require researchers, research institutions, companies and health care institutions to protect the privacy of data subjects, which can often present barriers for data sharing and re-use, in particular across borders. International data sharing initiatives must additionally navigate multiple overlapping regulatory frameworks. Continuous effort is needed to clarify the impact that such laws have on the sharing of genomic and related-health data. The Health Data Sharing, Privacy, and Regulatory Forum consists of a team of international data protection and legal experts who solicit, contribute, and review blog posts. They publish short and topical blog posts on the GA4GH website for the genomics community, exploring data-related regulations around the world and their impact on data sharing.
Date
Title
15 Dec 2023
14 Sep 2023
Don't see your name? Get in touch:
- Fabiana Arzuaga
Ministerio de Ciencia, Tecnología e Innovación - Dixie Baker
Martin, Blanck and Associates - Michael Baudis
University of Zurich - Alexander Bernier
McGill University / Université McGill - Michael Brudno
University Health Network - Ramon Felciano
Digital Alchemy - Yann Joly
Centre of Genomics and Policy - Fruzsina Molnár-Gábor
Heidelberg University - Pilar Nicolas
Independent Contributor, University of the Basque Country - Tommi Nyrönen
CSC – IT CENTER FOR SCIENCE - Pedro Rondot Radío
Angel H. Roffo Institute of Oncology - Chris Sander
Dana-Farber Cancer Institute - Adrian Thorogood
Terry Fox Research Institute - Susheel Varma
Information Commissioner's Office
News, events, and more
Catch up with all news and articles associated with Health Data Sharing, Privacy, and Regulatory Forum (formerly GDPR Forum).
