Regulatory & EthicsRegulatory & 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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Built on a novel human rights framework, REWS creates and harmonises forward-looking consent and privacy policies, and anticipatory data governance models.
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.
work stream leads
  • Yann Joly
  • Dianne Nicol
staff contact

Products

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
12 May 2023
Tell us what you think!
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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
#

Date

Title

27 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)