Regulatory & Ethics Work Stream (REWS)

Develops community-driven policies, tools, and standards that address regulatory and ethical considerations in genomic research and international data sharing.

Overview

Summary Announcements

The GA4GH Regulatory & Ethics Work Stream (REWS) offers guidance on the regulatory, ethical, and social implications of genomic research and data sharing, building on the human right to benefit from science. The Work Stream develops community-driven tools, standards, and policies that foster common practices across countries, sectors, and institutions.

REWS is a foundational Work Stream, which means it formally reviews all GA4GH products during the approval process.

Please note that the team is in the process of updating REWS product information to reflect the Work Stream's current activities. If you have any questions or would like to get involved, please contact rews-coordinator@ga4gh.org.

Image summary -

Built on a novel human rights framework, REWS creates and harmonises forward-looking consent and privacy policies, and anticipatory data governance models.

Announcements

Date	Title
3 March 2026	The Global Alliance for Genomics and Health (GA4GH) Product Steering Committee has approved the release of two new Regulatory & Ethics Work Stream products
9 December 2025	GA4GH Public Attitudes blog post discusses how older research participants are motivated to receive genetic results for the benefit of younger relatives
20 November 2025	GA4GH Public Attitudes blog post explores individual attitudes toward medical and genetic data sharing in Latin America and the development of two new indexes
30 October 2025	GA4GH Public Attitudes blog post explores the role of the ‘commercialisation effect’ in shaping Australians’ attitudes towards a hypothetical national genomic repository
9 September 2025	Two GA4GH Regulatory & Ethics Work Stream products are now open for public comment
24 July 2025	GA4GH Public Attitudes blog post explores the perceived risks of sharing genomic data with researchers
17 June 2025	Policy Brief: will the UK participate in the European Health Data Space?
4 February 2025	GA4GH Policy Brief: children’s data protection and genomic research (part 2: consent and lawful bases)
30 January 2025	GA4GH welcomes new Co-Leads for four Work Streams
23 January 2025	GA4GH Policy Brief: children’s data protection and genomic research (part 1: general considerations)
16 January 2025	Public Attitudes blog post explores public perceptions of international genetic information sharing for biomedical research in China.
5 December 2024	The GA4GH Model Data Access Agreement (DAA) Clauses have been approved as an official GA4GH product
12 November 2024	Approved earlier this year, Diversity in Datasets urges researchers to pursue more than just "ancestral diversity"
29 May 2024	GA4GH submits comments on the WHO’s draft principles for human genome access, use, and sharing
16 November 2023	Join four new GA4GH groups to help shape guidelines for pandemic prep, schema consensus, sequencing metadata, and categorical variants
12 May 2023	Welcome to the new GA4GH website!

Publications Documents Videos

Publications

Title	Author(s)	Year
Navigating ethical, legal and social implications in genomic newborn screening	Lewis, A.C.F. et al. Lewis, A.C.F., Brown, G., Bombard, Y.	2026
Communicating clearly about data sharing in genomics	Thaler, D. et al. Thaler, D., Uberoi, D., Thorogood, A., Milne, R., Newson A.J., Hall, A., Glazer, D., Esselaar, P., Joly, Y.	2025
The Key Features of a Genetic Nondiscrimination Policy: A Delphi Consensus Statement	Uberoi, D. et al. Uberoi, D., Dalpé, G., Cheung, K., Kondrup, E., Palmour, N., Arawi, T., Arych, M., Ramiro Aviles, M.A., Ayuso, C., Bentzen, H.B., Blizinsky, K., Bombard, Y., Chandrasekharan, S., Chung, B.H.Y., de Paor, A., Doerr, M., Dove, E.S., Dupras, C., Granados-Moreno, P., Greenbaum, D., Haidar, H., Ho, C.H., Jamuar, S.S., Kim, H., Lebret, A., Macdonald, A., Minssen, T., Nasir, J., Nicol, D., Nicolás, P., Otlowski, M., Nair, A.P.S., Prince, A.E.R., Rothstein, M., Ryan, R., Sillon, G., Singh, K.K., Stedman, I., Tiller, J., Van Hoyweghen, I., Zawati, M.H., Joly, Y.	2024
Should secondary pharmacogenomic variants be actively screened and reported when diagnostic genome-wide sequencing is performed in a child?	Friedman J.M. et al. Friedman J.M., Bombard Y., Carleton B., Issa A.M., Knoppers B., Plon S.E., Rahimzadeh V., Relling M.V., Williams M.S., van Karnebeek C., Vears D., Cornel M.C.	2024
Investigating the roles and responsibilities of institutional signing officials after data sharing policy reform for federally funded research in the United States: national survey	Rahimzadeh, V. et al. Rahimzadeh, V., Baek, J., Lawson, J.	2024
EpiVar Browser: advanced exploration of epigenomics data under controlled access	Lougheed, D.R. et al. Lougheed, D.R., Liu, H., Aracena, K.A., Grégoire, R., Pacis, A., Pastinen, T., Barreiro, L.B., Joly, Y., Bujold, D., Bourque, G.	2024
Defining and pursuing diversity in human genetic studies	Raven-Adams, M.C. et al. Raven-Adams, M.C., Joly, Y., Knoppers, B.M., Chandrasekharan, S., Thorogood, A., Kumuthini, J., Ho, C.W.L, Gonzalez, A., Nelson, S.C., Bombard, Y., Thaldar, D., Liu, H., Costa, A., Muralidharan, V., Henriques, S., Nasir, J., Lumaka, A., Kaiser, B., Jamuar, S.S., Lewis, A.C.F.	2024
Comment Form: WHO Principles for Human Genome Access, Use, and Sharing	Nicol, D. et al. Nicol, D., Uberoi, D.	2024
Achieving procedural parity in managing access to genomic and related health data: a global survey of data access committee members	Rahimzadeh, V. et al. Rahimzadeh, V., Baek, J., Lawson, J., Dove, E.	2024
A qualitative interview study to determine barriers and facilitators of implementing automated decision support tools for genomic data access	Rahimzadeh, V. et al. Rahimzadeh, V., Baek, J., Lawson, J., Dove, E.	2024
A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate	Kaiser, B. et al. Kaiser, B., Uberoi, D., Raven-Adams, M.C., Cheung, K., Bruns, A., Chandrasekharan, S., Otlowski, M., Prince, A.E.R., Tiller, J., Ahmed, A., Bombard, Y., Dupras, C., Ryan, R., Joly, Y.	2024
Recording the ethical provenance of data and automating data stewardship	Bernier, A. et al. Bernier, A., Raven-Adams, M., Zaccagnini, D., Knoppers, B. M.	2023
Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries	Richard Milne Richard Milne	2022
Leveraging Algorithms to Improve Decision-Making Workflows for Genomic Data Access and Management	Rahimzadeh, V. et al. Rahimzadeh, V., Lawson, J., Rushton, G., Dove, E.S.	2022
Genetic discrimination still casts a large shadow in 2022.	Joly, Y. et al. Joly, Y., Dalpe, G.	2022
International federation of genomic medicine databases using GA4GH standards	Thorogood, A. et al. Thorogood, A., Rehm, H.L., Goodhand, P., Page, A.J.H., Joly, Y., Baudis, M., Rambla, J., Navarro, A., Nyronen, T.H., Linden, M., Dove, E.S., Fiume, M., Brudno, M., Cline, M.S., Birney, E.	2021
Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries	Milne, R. et al. Milne, R., Morley, K.I., Almarri, M.A.	2021
An international policy on returning genomic research results.	Lewis, A.C.F. et al. Lewis, A.C.F., Knoppers, B.M., Green, R.C.	2021
Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data.	Middleton, A. et al. Middleton, A., Milne, R., Howard, H.	2020
How Can We Not Waste Legacy Genomic Research Data?	Wallace, S.E. et al. Wallace, S.E., Kirby, E., Knoppers, B.M.	2020
Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?	Middleton, A. et al. Middleton, A., et al.	2020
Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia	Milne, R. et al. Milne, R., Morley, K.I., Howard, H., Niemiec, E., Nicol, D., Critchley, C., Prainsack, B., Vears, D., Smith, J., Steed, C., Bevan, P., Atutornu, J., Farley, L., Goodhand, P., Thorogood, A., Kleiderman,E., Middleton, A.	2019
Trust in genomic data sharing among members of the general public in the UK	Milne, R. et al. Milne, R., Morley, K.I., Howard, H.	2019
Return of individual genomic research results: are laws and policies keeping step?	Thorogood, A. et al. Thorogood, A., Dalpé, G., Knoppers, B.M.	2019
Openness, inclusion, and respect in dementia research	Thorogood, A. et al. Thorogood, A., Dalpé, G., Gastmans, C., Gauthier, S.	2019
Model consent clauses for rare disease research.	Nguyen, M.T. et al. Nguyen, M.T., Goldblatt, J., Isasi, R., et al.	2019
Model consent clauses for rare disease research	Nguyen, M.T. et al. Nguyen, M.T., Goldblatt, J., Isasi, R., Jagut, M., Jonker, A.H., Kaufmann, P., Ouillade, L., Molnar-Gabor, F., Shabani, M., Sid, E., Tassé, A., Wong-Rieger, D., Knoppers, B.M.	2019
Letter: Relearning the 3 R’s? Reinterpretation, Recontact, and Return of Genetic Variants	Knoppers, B.M. et al. Knoppers, B.M., Thorogood, A., Zawati, M.H.	2019
Consent insufficient for data release	Nicol, D. et al. Nicol, D., Eckstein, L., Bentzen, H.B., Borry, P., Burgess, M., Burke, W., Chalmers, D.R., Cho, M., Dove, E.S., Fullerton, S., Ida, R., Kato, K., Kaye, J., Koenig, B., Manson, S., McGrail, K., Meslin, E.M., O'Doherty, K., Prainsack, B., Shabani, M., Tabor, H., Thorogood, A., de Vries, J.	2019
The Genomic Commons	Contreras, J.L. et al. Contreras, J.L., Knoppers, B.M.	2018
Review and comparison of electronic patient-facing family health history tools	Welch, B.M. et al. Welch, B.M., Wiley, K., Pflieger, L., Achiangia, R., Baker, K., Hughes-Halbert, C., Morrison, H., Schiffman, J., Doerr, M.	2018
Responsible Sharing of Biomedical Data and Biospecimens via the ‘Automatable Discovery and Access Matrix’ (ADA-M)	Woolley, J.P. et al. Woolley, J.P., Kirby, E., Leslie, J., Jeanson, F., Cabili, M.N., Rushton, G., Hazard, J.G.	2018
Registered access: authorizing data access	Dyke, S.O.M. et al. Dyke, S.O.M., Linden, M., Lappalainen, I., De Argila, J.R., Carey, K., Lloyd, D., Spalding, J.D., Cabili, M.N., Kerry, G., Foreman, J., Cutts, T., Shabani, M., Rodriguez, L.L., Haeussler, M., Walsh, B., Jiang, X., Wang, S., Perrett, D., Boughtwood, T., Matern, A., Brookes, A.J., Cupak, M., Fiume, M., Pandya, R., Tulchinsky, I., Scollen, S., Törnroos, J., Das, S., Evans, A.C., Malin, B.A., Beck, S., Brenner, S.E., Nyrönen, T., Blomberg, N., Firth, H.V., Hurles, M.E., Philippakis, A.A., Rätsch, G., Brudno, M., Boycott, K.M., Rehm, H.L., Baudis, M., Sherry, S.T., Kato, K., Knoppers, B.M., Baker, D., Flicek, P.	2018
Privacy-Preserving Linkage of Genomic and Clinical Data Sets	Baker, D. et al. Baker, D., Knoppers, B.M., Phillips, M., van Enckevort, D., Kaufmann, P., Lochmuller, H., Taruscio, D.	2018
Privacy-Preserving Linkage of Genomic and Clinical Data Sets	Baker, D.B. et al. Baker, D.B., Knoppers, B.M., Phillips, M., van Enckevort, D., Kaufmann, P., Lochmuller, H., Taruscio, D.	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
Key Implications of Data Sharing in Pediatric Genomics	Rahimzadeh, V. et al. Rahimzadeh, V., Schickhardt, C., Knoppers, B.M., Sénécal, K., Vears, D.F., Fernandez, C.F., Pfister, S., Plon, S.E., Terry, S.F., Williams, J., Williams, M.S., Cornel, M.C., Friedman, J.M.	2018
Key Implications of Data Sharing in Pediatric Genomics	Rahimzadeh, V. et al. Rahimzadeh, V., Schickhardt, C., Knoppers, B.M.	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
BRCA Challenge: BRCA Exchange as a global resource for variants in BRCA1 and BRCA2	Cline, M.S. et al. Cline, M.S., Liao, R.G., Parsons, M.T., Paten, B., Alquaddoomi, F., Antoniou, A., Baxter, S., Brody, L., Cook-Deegan, R., Coffin, A., Couch, F.J., Craft, B., Currie, R., Dlott, C.C., Dolman, L., den Dunnen, J.T., Dyke, S.O.M., Domchek, S.M., Easton, D., Fischmann, Z., Foulkes, W.D., Garber, J., Goldgar, D., Goldman, M.J., Goodhand, P., Harrison, S., Haussler, D., Kato, K., Knoppers, B.M., Markello, C., Nussbaum, R., Offit, K., Plon, S.E., Rashbass, J., Rehm, H.L., Robson, M., Rubinstein, W.S., Stoppa-Lyonnet, D., Tavtigian, S., Thorogood, A., Zhang, C.	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
APPLaUD: access for patients and participants to individual level uninterpreted genomic data.	Thorogood, A. et al. Thorogood, A., Bobe, J., Prainsack, B.	2018
APPLaUD: Access for patients and participants to individual level uninterpreted genomic data	Thorogood, A. et al. Thorogood, A., Bobe, J., Prainsack, B., Middleton, A., Scott, E., Nelson, S., Corpas, M., Bonhomme, N., Rodriguez, L.L., Murtagh, M., Kleiderman, E.	2018
Your DNA, Your Say	Middleton, A. Middleton, A.	2017
Tools to foster trust in sharing healthcare data: Toward a common language for regulatory metadata	Woolley, J.P. Woolley, J.P.	2017
The path to reducing duplication of human research ethics review in Australia	Johns, A. et al. Johns, A., Nicol, D., Zeps, N., Chalmers, D.R.	2017
Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance	Cook-Deegan, R. et al. Cook-Deegan, R., Ankeny, R.A., Jones, K.M.	2017
Genomic newborn screening: Public health policy considerations and recommendations	Friedman, J.M. et al. Friedman, J.M., Cornel, M.C., Goldenberg, A.J., Lister, K.J., Sénécal, K., Vears, D.F.	2017
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
Ethics and Big Data in health	Knoppers, B.M. et al. Knoppers, B.M., Thorogood, A.M.	2017
Consent Processes for Mobile App Mediated Research: Systematic Review	Moore, S. et al. Moore, S., Tassé, A.M., Thorogood, A., Winship, I., Zawati. M., Doerr, M.	2017
A community effort to protect genomic data sharing, collaboration and outsourcing	Wang, S. et al. Wang, S., Jiang, X., Tang, H., Wang, X., Bu, D., Carey, K., Dyke, S.O.M., Fox, D., Jiang, C., Lauter, K., Malin, B.A., Sofia, H., Telenti, A., Wang, L., Wang, W., Ohno-Machado, L.	2017
Public variant databases: Liability?	Thorogood, A. et al. Thorogood, A., Cook-Deegan, R., Knoppers, B.M.	2016
The discombobulation of de-identification	Phillips, M. et al. Phillips, M., Knoppers, B.M.	2016
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
Ethics review for international data-intensive research	Dove, E.S. et al. Dove, E.S., Townend, D., Meslin, E.M., Bobrow, M., Littler, K., Nicol, D., de Vries, J., Junker, A., Garattini, C., Bovenberg, J., Shabani, M., Lévesque, E., Knoppers, B.M.	2016
Ethical issues in consumer genome sequencing: Use of consumers samples and data	Niemiec, E. et al. Niemiec, E., Howard, H. C.	2016
Consent Codes: Upholding Standard Data Use Conditions	Dyke, S.O.M. et al. Dyke, S.O.M., Philippakis, A.A., Paltoo, D.N., Luetkemeier, E.S., Knoppers, B.M., Brookes, A.J., Spalding, J.D., Thompson, M., Roos, M., Boycott, K.M., Brudno, M., Hurles, M., Rehm, H.L., Matern, A., Fiume, M., Sherry, S.T.	2016
Beyond Our Borders? Public Resistance to Global Genomic Data Sharing	Majumder, M. A. et al. Majumder, M. A., Cook-Deegan, R., Mcguire, A. L.	2016
Are Data Sharing and Privacy Protection Mutually Exclusive?	Joly, Y. et al. Joly, Y., Dyke, S.O.M., Knoppers, B.M., Pastinen, T.	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 ethics harmonization and the global alliance for genomics and health	Knoppers, B.M. Knoppers, B.M.	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
ELSI practices in genomic research in East Asia: Implications for research collaboration and public participation	Yoshizawa, G. et al. Yoshizawa, G., Ho, C.W., Zhu, W., Hu, C., Syukriani, Y., Lee, I., Kim, H., Tsai, D.F.C., Minari, J., Kato, K.	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
2 March 2026	Definition of Genetic Discrimination
27 February 2026	Genetic Discrimination Toolkit: Position Statement on Genetic Discrimination
13 January 2026	April 2024 Connect Agenda - Data Visiting
13 January 2026	April Connect 2025 Agenda - Clinical data sharing
13 January 2026	April Connect 2025 Agenda - Data Visiting
13 January 2026	Data Visiting Study Group Agenda & Meeting Minutes
9 January 2026	Diversity in Datasets meeting minutes (29 March 2023)
12 December 2025	Genomic sequencing in newborn screening policy tool
11 December 2025	Genomic sequencing in newborn screening literature synopsis
13 November 2025	REWS road map (2025 to 2027)
8 October 2025	From Global Standards to Local Implementation: Applying REWS’ Model Consent Clauses in African Research Settings (October Connect 2025)
4 September 2025	Regulatory & Ethics Work Stream (REWS) Road Map 2025-2026
7 May 2025	Genetic Discrimination Toolkit Meeting Minutes (May 2025)
12 February 2025	GA4GH Data Sharing Lexicon
9 January 2025	International Genomic Data Sharing by Health Technologies Industries: Points to Consider
5 December 2024	Model Data Access Agreement (DAA) Clauses
17 September 2024	Generative AI for Genomic Data Sharing (September Connect 2024)
27 August 2024	GA4GH Updates Report — August 2024
28 May 2024	GA4GH response to WHO draft principles for human genome access, use, and sharing
24 May 2024	Meeting report: April Connect 2024
16 May 2024	Genetic Discrimination Toolkit Meeting Minutes (May 2024)
27 March 2024	Diversity in Datasets Policy v2.4
6 March 2024	REWS AI/ML meeting minutes (6 March 2024)
23 January 2024	REWS AI/ML meeting minutes (23 January 2024)
29 November 2023	REWS AI/ML Agenda meeting minutes (29 November 2023)
8 November 2023	Ethical Preparedness for Pandemics and Epidemics Framework in-progress documentation
7 November 2023	Meeting Report: September Connect 2023
13 October 2023	Public Attitudes for Genomic Policy Brief: genetic exceptionalism
19 September 2023	GA4GH Product Development and Approval Process
14 September 2023	Code of Ethics and Community Conduct (CECC)
14 September 2023	Guidelines for respectful engagement
14 September 2023	Procedures for reviewing reported violations of the Code of Ethics and Community Conduct
11 September 2023	Public Attitudes for Genomic Policy Brief: familiarity
23 May 2023	Public Attitudes for Genomic Policy briefs: Return of Research Results
28 April 2023	Family history tools inventory (v2.0)
6 April 2023	Archived: Consent Tools
6 April 2023	Archived: profile completion rule set for ADA-M v1.0
6 April 2023	Archived: technology primer: overview of technological solutions to support privacy preserving record linkage
6 April 2023	Archived: Windows software link for ADA-M (Automatable Discovery and Access Matrix)
5 April 2023	Informational packet: getting involved with GA4GH
28 March 2023	Diversity in Datasets meeting minutes (28 March 2023)
1 March 2023	Diversity in Datasets meeting minutes (1 March 2023)
28 February 2023	Diversity in Datasets meeting minutes (28 February 2023)
23 January 2023	Diversity in Datasets meeting minutes (23 January 2023)
12 January 2023	Machine-Readable Consent Guidance (v1.0)
12 January 2023	Responsible Data Sharing to Respond to the COVID-19 Pandemic: Ethical and Legal Considerations (v3.0)
11 January 2023	REWS working definition of equity, diversity, and inclusion (EDI)
10 January 2023	Public Attitudes for Genomic Policy briefs: What does the UK public think about the storage and use of its genetic data?
13 December 2022	Diversity in Datasets meeting minutes (13 December 2022)
2 November 2022	Diversity in Datasets meeting minutes (2 November 2022)
12 October 2022	Presentation: driving innovation in genomic data science through ethical and efficient data access
11 October 2022	Meeting agenda: REWS — Diversity in Datasets (11 Oct 2022)
6 October 2022	Meeting agenda: Clinical Data Sharing and Consent (6 Oct 2022)
13 September 2022	Meeting agenda: driving innovation in genomic data science through ethical and efficient data access (2022)
8 September 2022	Meeting agenda: REWS Diversity in Datasets (8 Sep 2022)
7 September 2022	Diversity in Datasets meeting minutes (7 September 2022)
31 August 2022	Infographic: Your DNA Your Say — trust and trustworthiness
31 August 2022	Public Attitudes for Genomic Policy briefs: Trust and Trustworthiness
30 August 2022	Meeting agenda: REWS — Genetic Discrimination
12 August 2022	Poster: REWS selected outputs (2022)
28 July 2022	Meeting agenda: REWS — Diversity in Datasets (28 Jul 2022)
5 July 2022	Meeting agenda: Public Attitudes for Genomic Policy
29 June 2022	Meeting agenda: REWS — Diversity in Datasets (29 Jun 2022)
29 June 2022	Working document: Diversity in Datasets
23 June 2022	Clinical Genomic Consent Clauses (v1.0)
16 June 2022	Meeting agenda: Clinical Data Sharing and Consent (16 Jun 2022)
28 April 2022	Meeting agenda: Public Attitudes for Genomic Policy (28 Apr 2022)
27 April 2022	Meeting agenda: Ethical Provenance Toolkit (27 Apr 2022)
25 April 2022	Diversity in Datasets meeting minutes (25 April 2022)
25 April 2022	Meeting agenda: REWS Diversity in Datasets (25 Apr 2022)
21 April 2022	Large Scale Initiatives Consent Clauses (v1.0)
19 April 2022	Working document: Genetic Discrimination paper questions
17 March 2022	Meeting agenda: Clinical Data Sharing and Consent (17 Mar 2022)
14 March 2022	Working document: Diversity in Datasets — usability, operationalisation, and transparency
1 March 2022	Road map: Regulatory & Ethics (2022 to 2023)
23 February 2022	Meeting agenda: REWS — Genetic Discrimination (23 Feb 2022)
8 December 2021	REWS AI/ML meeting minutes (8 December 2021)
2 December 2021	Genetic Discrimination: Implications for Data Sharing Projects (GeDI) (v1.0)
27 October 2021	Data Access Committee Guiding Principles and Procedural Standards Policy (v1.0)
27 October 2021	Pediatric Consent to Genetic Research Clauses (v1.0)
21 October 2021	Meeting minutes: REWS — Diversity in Datasets (2021)
14 October 2021	Bias in AI/ML (October Connect 2021)
9 September 2021	REWS: AI/ML Bias Exploration
1 July 2021	Framework for Involving and Engaging Participants, Patients, and Publics in Genomics Research and Health Implementation (v1.0)
24 June 2021	Policy on Clinically Actionable Genomic Research Results (v1.0)
28 May 2021	Meeting agenda: REWS — Genetic Discrimination (28 May 2021)
13 May 2021	Meeting agenda: DACReS (13 May 2021)
29 April 2021	Meeting minutes: Regulatory & Ethics Work Stream
8 April 2021	Meeting agenda: REWS — Genetic Discrimination (8 Apr 2021)
1 March 2021	Meeting minutes: DACReS (2021)
20 January 2021	Familial Consent Clauses (v1.0)
28 September 2020	Minutes: Consent Workshop, 9th Plenary
8 July 2020	Consent Clauses for Genomic Research (v1.0)
8 July 2020	Ethics Review Recognition Policy (v2.0)
11 March 2020	Minutes: consent workshop
31 January 2020	Minutes: working meeting on consent
3 September 2019	Framework for responsible sharing of genomic and health-related data sharing (v1.0)
2 September 2019	Consent Policy (v2.0)
1 August 2019	Data Privacy and Security Policy (v2.0)
1 August 2019	Model consent clauses for rare disease research (v1.0)
7 January 2019	Archived: Automatable Discovery and Access Matrix (ADA-M) guidance document
20 March 2018	Archived: privacy-preserving record linkage: ethico-legal considerations
13 February 2017	GA4GH Ethics Review Recognition Policy (v1.0)
1 September 2016	Archived: Automatable Discovery and Access Matrix (ADA-M) spreadsheet
15 March 2016	Archived: Data Sharing Lexicon
7 February 2016	Enabling family history use in clinical practice: a review of current practice and policy considerations
7 February 2016	Family history tools inventory (v1.0)
1 February 2016	Archived: Accountability Policy (v1.0)
21 January 2016	Archived: Data Use Categories and Requirements (Consent Codes)
1 January 2016	Archived: Mac software link for ADA-M (Automatable Discovery and Access Matrix)
27 May 2015	Consent Policy (v1.0)
26 May 2015	Data Privacy and Security Policy (v1.0)

Videos

	Date	Title
	9 October 2018	GA4GH 6th Plenary "Going Global": right to benefit — Your DNA, Your Say (Anna Middleton)
	16 November 2017	GA4GH 5th Plenary: facilitating data sharing through data protection — towards a code of conduct (David Townend)
	16 November 2017	GA4GH 5th Plenary: governing and using health data — opening remarks (Bartha Knoppers)
	16 November 2017	GA4GH 5th Plenary: governing and using health data — panel
	16 November 2017	GA4GH 5th Plenary: Your DNA, Your Say (Anna Middleton)
	9 June 2015	GA4GH 3rd Plenary: policy — consent and privacy and security