About us
Learn how GA4GH helps expand responsible genomic data use to benefit human health.
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.
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.
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Image summary: Built on a novel human rights framework, REWS creates and harmonises forward-looking consent and privacy policies, and anticipatory data governance models.
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Technical description
Activates the right to science and the right to recognition for scientific production by creating community-driven policies, tools, and standards that consider the ethical, legal, and social implications of genomic research and data sharing from an international standpoint.
Products
Clinical Data Sharing and Consent
Elucidates what clinical data can be shared without a patient or participant’s explicit consent for quality care improvement
Consent Policy
Provides guidelines for the international sharing of genomic and related health data
Consent Toolkit
Documents designed to help researchers and clinicians draft clear, informative consent forms
Data Access Committee Review Standards (DACReS) Toolkit
Provides guiding principles and procedural standards for data access committees
Data Privacy and Security Policy
Guides sharing of genomic and related health data to respect participant and patient privacy and integrity
Diversity in Datasets
Aims to develop a policy framework that addresses how to promote global diversity in datasets within genomic research
Ethical Preparedness for Pandemics and Epidemics (EPPE) Framework
Develops framework for ethical conduct in human-pathogen genomics research during pandemics and epidemics
Ethical Provenance Toolkit
Tools to promote consistency and harmonisation throughout the stages of the biomedical data life cycle — ensuring clear oversight despite differences between institutions
Ethics Review Recognition Policy
Provides a standard baseline of the ethics review process for research involving multiple jurisdictions
Family History Toolkit
Provides tools and best practices for documenting family health history information
Framework for Involving and Engaging Participants, Patients, and Publics in Genomics Research and Health Implementation
Helps institutions evaluate their engagement strategies with research participants, patients, and the public
Framework for responsible sharing of genomic and health-related data
Provides foundational principles for responsible data sharing
GDPR & International Health Data Sharing Forum
Publishes regular briefs exploring the impact of GDPR on sharing genomics and related health data
Genetic Discrimination Toolkit
Explores key issues and the implications of addressing genetic discrimination
Machine Readable Consent Guidance (MRCG)
Describes how to map consent forms directly to the Data Use Ontology (DUO)
Policy on Clinically Actionable Genomic Research Results
Provides guidance on establishing policies for returning genomic results to research participants
Public Attitudes for Genomic Policy — Blog Posts
Translates findings from the “Your DNA, Your Say” project and other studies of public attitudes into useful briefs and infographics
Responsible Data Sharing to Respond to the COVID-19 Pandemic: Ethical and Legal Considerations
Shares key legal and ethical issues of human genomic research in the context of the COVID-19 pandemic
Your DNA, Your Say (Participant Values Survey)
Explores how people around the world feel about the collection, use, and sharing of genetic and health data for research
Publications
Community Resources
Dive deeper into our Work Stream! REWS builds on the internationally-recognised human right to benefit from science and to recognition for scientific production, offering community-driven guidance on the ethical, legal, and social implications of genomic data sharing. REWS contributors identify areas of focus for the Work Stream’s products, addressing issues such as consent, data access, genetic discrimination, and diversity in datasets. Outputs apply to varying contexts, across a range of countries and institutions. REWS also facilitates the regulatory and ethical approval of technical products developed by other GA4GH Work Streams.
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Date
Title
Info
16 Nov 2023
Join four new GA4GH groups to help shape guidelines for pandemic prep, schema consensus, sequencing metadata, and categorical variants
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Title
Info
Repeat
Day
Time
Duration
Working meeting to discuss what clinical data can be shared without explicit consent from participants and patients to inform variant interpretation
ad hoc
ad hoc
UTC
1 Hour
Working meeting to continue the development of resources and guidance for Data Access Committees (DACs)
ad hoc
ad hoc
UTC
1 Hour
Working meeting to promote and discuss the meaning of diversity in genomic datasets
Monthly
Rotates
UTC
1 Hour
This group meets to develop a framework for the responsible use of human genomic data during pandemics and epidemics.
ad hoc
ad hoc
UTC
1 Hour
Ethical Provenance Toolkit subgroup meeting
Working meeting to discuss the progress of developing ethical provenance resources and to identify where further efforts are needed
ad hoc
ad hoc
UTC
1 Hour
Working meeting to explore key topics and develop resources harmonizing legal and ethical norms around genetic discrimination
ad hoc
ad hoc
UTC
1 Hour
Working meeting to develop accessible information (eg. briefs, infographics) addressing public attitudes towards genomic research
To Be Decided
To Be Decided
UTC
1 Hour
The REWS general meeting brings together all contributors across all of the subgroups to discuss full Work Stream relevant topics. This can include but is not limited to subgroup updates, Driver Project/community updates, roadmap discussions, event planning, etc.
Every Two Months
Rotates
UTC
1 Hour
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Date
Title
27 Mar 2024
15 Dec 2023
7 Nov 2023
19 Sep 2023
14 Sep 2023
14 Sep 2023
28 Apr 2023
6 Apr 2023
12 Jan 2023
30 Aug 2022
12 Aug 2022
29 Jun 2022
23 Jun 2022
21 Apr 2022
1 Mar 2022
13 May 2021
1 Mar 2021
20 Jan 2021
28 Sep 2020
8 Jul 2020
8 Jul 2020
11 Mar 2020
31 Jan 2020
2 Sep 2019
1 Aug 2019
13 Feb 2017
15 Mar 2016
7 Feb 2016
1 Feb 2016
27 May 2015
26 May 2015
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Don't see your name? Get in touch:
- Mutiat Afolabi
Wellcome Sanger Institute (WSI) - Fabiana Arzuaga
Ministerio de Ciencia, Tecnología e Innovación - Qasim Ayub
Monash University Malaysia - Dixie Baker
Martin, Blanck and Associates - Michael Baudis
University of Zurich - Michael Beauvais
University of Toronto - Anja Bedeker
South African National Bioinformatics Institute, Public Health Alliance for Genomic Epidemiology (PHA4GE) - Eva Bermejo-Sánchez
Instituto de Salud Carlos III - Alexander Bernier
McGill University / Université McGill - Daniela Bodemer
Melbourne Genomics Health Alliance - Yvonne Bombard
University of Toronto, Unity Health Toronto - Tiffany Boughtwood
Australian Genomics - Sarion Bowers
Wellcome Sanger Institute (WSI) - Rebecca Boyles
RTI International - Gemma Brown
Wellcome Sanger Institute (WSI) - Michael Brudno
University Health Network - Knox Carey
Intertrust Technologies Corporation - Esmeralda Casas-Silva
NIH National Cancer Institute (NCI) - Subhashini Chandrasekharan
National Institutes of Health (NIH) - Shu Hui Chen
NIH National Heart, Lung, and Blood Institute (NHLBI) - Hayley Clissold
Wellcome Sanger Institute (WSI) - Mélanie Courtot
Ontario Institute for Cancer Research (OICR) - Thijs Devriendt
KU Leuven - Megan Doerr
Sage Bionetworks - Joaquin Dopazo
Progress and Health Foundation - Edward Dove
University of Edinburgh - Ramon Felciano
Digital Alchemy - Marc Fiume
DNAstack - Clara Gaff
Melbourne Genomics Health Alliance - Kais Ghedira
Institut Pasteur de Tunis - Robert Green
Broad Institute of MIT and Harvard, Harvard Medical School, Mass General Brigham - Jaime Guidry Auvil
NIH National Cancer Institute (NCI) - Vivek Gupta
Macquarie University - Yosr Hamdi
Institut Pasteur de Tunis - Tina Hernandez-Boussard
Stanford University - Michael Hoffman
Princess Margaret Cancer Centre - Jacob Shujui Hsu
National Taiwan University - Sumit Jamuar
Global Gene Corp - Saumya Jamuar
KK Women's and Children's Hospital - Yann Joly
Centre of Genomics and Policy - Beatrice Kaiser
McGill University / Université McGill, Centre of Genomics and Policy - Shona Kerr
MRC Human Genetics Unit - Kristina Kékesi-Lafrance
CIUSSS de l'Ouest-de-l'Île-de-Montréal - Jonathan Lawson
Broad Institute of MIT and Harvard - Zane Lombard
University of the Witwatersrand, National Health Laboratory Service - Mavis Machirori
Ada Lovelace Institute - Maxine Mackintosh
Genomics England - Mogomotsi Matshaba
Botswana-Baylor Children's Clinical Centre of Excellence - Richard Milne
Wellcome Connecting Science, Wellcome Genome Campus - Fruzsina Molnár-Gábor
Heidelberg University - Mizuki Morita
Okayama University - Madeleine Murtagh
University of Glasgow - Jamal Nasir
University of Northampton - Joanne Ngeow
National Cancer Centre Singapore - Dianne Nichol
University of Tasmania - Pilar Nicolas
Independent Contributor, University of the Basque Country - Emilia Niemiec
Lunds Universitet - Tommi Nyrönen
CSC – IT CENTER FOR SCIENCE - Dina Paltoo
NIH National Heart, Lung, and Blood Institute (NHLBI) - Christine Patch
Wellcome Connecting Science, Wellcome Genome Campus - Sharon Plon
Baylor College of Medicine - Vasiliki Rahimzadeh
Baylor College of Medicine - Jean Louis Raisaro
Lausanne University Hospital - Maili Raven-Adams
The Nuffield Council on Bioethics - Renee Rider
NIH National Human Genome Research Institute (NHGRI) - Pedro Rondot Radío
Angel H. Roffo Institute of Oncology - Rosalyn Ryan
Healthfox US Inc - Swayamsiddha Sahoo
Institute of Resource Development and Social Management - Chris Sander
Dana-Farber Cancer Institute - Matthieu Schapranow
Hasso Plattner Institute for Digital Engineering - Jessica Seegobin
Ontario Institute for Cancer Research (OICR) - Sikha Singh
Association of Public Health Laboratories - Sharon Terry
Genetic Alliance - Emma Tudini
Australian Genomics - Diya Uberoi
McGill University / Université McGill, Centre of Genomics and Policy - Susheel Varma
Information Commissioner's Office - Danya Vears
Murdoch Children's Research Institute - Vanessa Vogel-Farley
RARE-X - Craig Voisin
Google LLC - Susan E. Wallace
University of Leicester - Eva Winkler
German Cancer Research Center (DKFZ) / National Center for Tumor Diseases (NCT) - Yasuhide Yamada
National Center for Global Health and Medicine - Ye Yan
NIH National Heart, Lung, and Blood Institute (NHLBI), Trans-Omics for Precision Medicine (TOPMed)