Framework for responsible sharing of genomic and health-related data

Provides foundational principles for responsible data sharing

Overview

Summary Benefits Target users Announcements

To advance our understanding of human health and disease, we need to share genomic and related health data. The Framework for responsible sharing of genomic and health-related data, or the Framework for short, is guided by human rights, privacy, non-discrimination, and procedural fairness. All products developed by GA4GH build on the foundation of the Framework.

Image summary -

A diagram depicting the foundational principles and aims of the Framework for Responsible Sharing of Genomic and Health-Related Data — which is built upon the Universal Declaration of Human Rights.

Benefits

Provides a foundation for enabling responsible genomic and related health data sharing
Centres human rights in decisions about whether and how to share data

Target users

Researchers, clinicians, clinical laboratories, data generators, data custodians, data access committees, ethics review committees, data protection authorities, funding agencies, developers, research participants & patient communities, security officers, and research institutes

Announcements

Date	Title
29 January 2026	New GA4GH implementation story: Rakeiora Genomics Platform in New Zealand

Title	Related Driver Projects and Organisations
ARGO Data Platform	ICGC ARGO
CanDIG V2	Canadian Distributed Infrastructure for Genomics (CanDIG)
EJP-RD Virtual Platform	European Joint Programme on Rare Disease (EJP RD)

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Publications Documents

Publications

Title	Author(s)	Year
Openness, inclusion, and respect in dementia research	Thorogood, A. et al. Thorogood, A., Dalpé, G., Gastmans, C., Gauthier, S.	2019
Federated discovery and sharing of genomic data using Beacons	Fiume, M. et al. Fiume, M., Cupak, M., Keenan, S., Rambla, J., de la Torre, S., Dyke, S.O.M., Brookes, A.J., Carey, K., Lloyd, D., Goodhand, P., Haeussler, M., Baudis, M., Stockinger, H., Dolman, L., Lappalainen, I., Törnroos, J., Linden, M., Spalding, J.D., Ur-Rehman, S., Page, A., Flicek, P., Sherry, S.T., Haussler, D., Varma, S., Saunders, G., Scollen, S.	2019
The Genomic Commons	Contreras, J.L. et al. Contreras, J.L., Knoppers, B.M.	2018
Model Framework for Governance of Genomic Research and Biobanking in Africa - a Content Description	Yakubu, A. et al. Yakubu, A., Tindana, P., Matimba, A., Littler, K., Munung, N.S., Madden, E., Staunton, C., de Vries, J.	2018
Genomic Data Sharing [Special issue]	Joly, Y. et al. Joly, Y., Knoppers, B.M.	2018
Broaden human-rights focus for health data under GDPR	Knoppers, B.M. Knoppers, B.M.	2018
Appraisal of the Jordanian Law for Data Sharing in Stem Cell Research: In the Light of the ‘GA4GH Framework’ for Innovative Cancer Care.	Al-Tabba, A. et al. Al-Tabba, A., Al-Omari, A., Al-Hussaini, M.	2018
From Rosalind Franklin to Barack Obama: Data Sharing Challenges and Solutions in Genomics and Personalised Medicine	Lawler, M. et al. Lawler, M., Maughan, T.	2017
Sharing Health-Related Data: A Privacy Test?	Dyke, S.O.M. et al. Dyke, S.O.M., Dove, E.S., Knoppers, B.M.	2016
Facilitating a Culture of Responsible and Effective Sharing of Cancer Genome Data	Siu, L.L. et al. Siu, L.L., Lawler, M., Haussler, D., Knoppers, B.M., Lewin, J.H., Vis, D.J., Liao, R.G.	2016
Ethical issues in consumer genome sequencing: Use of consumers samples and data	Niemiec, E. et al. Niemiec, E., Howard, H. C.	2016
An International Framework for Data Sharing: Moving Forward with the Global Alliance for Genomics and Health	Rahimzadeh, V. et al. Rahimzadeh, V., Dyke, S.O.M., Knoppers, B.M.	2016
Data sharing in stem cell translational science: Policy statement by the International Stem Cell Forum Ethics Working Party	Bredenoord, A.L. et al. Bredenoord, A.L., Mostert, M., Isasi, R., Knoppers, B.M.	2015
Data analysis: Create a cloud commons	Stein, L.D. et al. Stein, L.D., Knoppers, B.M., Campbell, P., Getz, G., Korbel, J.O.	2015
Building the foundation for genomics in precision medicine	Aronson, S.J. et al. Aronson, S.J., Rehm, H.L.	2015
All the World’s a Stage: Facilitating Discovery Science and Improved Cancer Care through the Global Alliance for Genomics and Health	Lawler, M. et al. Lawler, M., Siu, L.L., Rehm, H.L., Chanock, S.J., Alterovitz, G., Burn, J., Calvo, F.	2015
To share or not to share is the question	Chalmers, D.R. et al. Chalmers, D.R., Nicol, D., Otlowski, M.F.	2014
International code of conduct for genomic and health-related data sharing	Sugano, S. Sugano, S.	2014
Framework for responsible sharing of genomic and health-related data.	Knoppers, B.M. Knoppers, B.M.	2014
Framework for Responsible Sharing of Genomic and Health-Related Data	Knoppers, B.M. Knoppers, B.M.	2014
Does policy grow on trees?	Knoppers, B.M. Knoppers, B.M.	2014
Building a Data Sharing Model for Global Genomic Research	Kosseim, P. et al. Kosseim, P., Dove, E.S., Baggaley, C., Meslin, E.M., Cate, F.H., Kaye, J., Harris, J.R., Knoppers, B.M.	2014

Documents

Date	Title
28 May 2024	GA4GH response to WHO draft principles for human genome access, use, and sharing
14 September 2023	Code of Ethics and Community Conduct (CECC)
3 September 2019	Framework for responsible sharing of genomic and health-related data sharing (v1.0)

Contributors Driver Projects

Contributors

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Fabiana ArzuagaMinisterio de Ciencia, Tecnología e Innovación, Buenos AIres
Dixie BakerMartin, Blanck and Associates
Knox CareyIntertrust Technologies Corporation, Sunnyvale
Esmeralda Casas-SilvaNIH National Cancer Institute (NCI), Bethesda
Megan DoerrSage Bionetworks, Seattle
Clara GaffMelbourne Genomics Health Alliance, Melbourne
Michael HoffmanPrincess Margaret Cancer Centre
Saumya JamuarKK Women's and Children's Hospital
Tommi NyrönenCSC – IT CENTER FOR SCIENCE
Christine PatchWellcome Connecting Science, Wellcome Genome Campus
Sharon TerryGenetic Alliance, Washington, DC
David TorrentsBarcelona Supercomputing Center, Barcelona
Susheel VarmaInformation Commissioner's Office
Craig VoisinGoogle LLC, Mountain View
Eva WinklerGerman Cancer Research Center (DKFZ) / National Center for Tumor Diseases (NCT), Heidelberg

Driver Projects

Title	Thematic Area
Canadian Distributed Infrastructure for Genomics (CanDIG)	Rare Disease Cancer Complex Traits Basic Biology
ICGC ARGO	Cancer
European Joint Programme on Rare Disease (EJP RD)	Rare Disease

News, events, and more

Catch up with all news and articles associated with Framework for responsible sharing of genomic and health-related data.

Compass central stone by the Maori in New Zealand

News

29 January 2026

GA4GH standards implementation in the Rakeiora Genomics Platform supports data security and sovereignty in Aotearoa New Zealand

News

20 June 2024

The Victor Phillip Dahdaleh Institute of Genomic Medicine at McGill University is formally named as a fifth Host Institution of GA4GH

A DNA strand extending across a blue background, filled with molecular structures and more DNA

News

28 May 2024

GA4GH submits comments on the WHO’s draft principles for human genome access, use, and sharing

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