Regulatory and Ethics Work Stream Lead: Professor Bartha Maria - PowerPoint PPT Presentation

Sep 21, 2022 •423 likes •496 views

16 October 2017 WS Presentations Regulatory and Ethics Work Stream Lead: Professor Bartha Maria Knoppers Lead: Professor Madeleine Murtagh Manager: Adrian Thorogood genomicsandhealth.org Regulatory and Ethics Work Stream (Overview) Roles:

16 October 2017 WS Presentations Regulatory and Ethics Work Stream Lead: Professor Bartha Maria Knoppers Lead: Professor Madeleine Murtagh Manager: Adrian Thorogood genomicsandhealth.org
Regulatory and Ethics Work Stream (Overview) Roles: • Ac>vate the human right of everyone to benefit from the progress of science • Promote forward-looking governance • Harmonize governance across countries, sectors, insAtuAons, and projects. genomicsandhealth.org
REWS Toolkit Framework for Responsible Sharing of Genomic and Health-Related Data Privacy & • Consent Policy • Security Consent Clauses • Lexicon • and Template Accountability • for InternaAonal Ethics Review • Data Sharing Equivalency Consent Codes • 3 genomicsandhealth.org
Regulatory and Ethics Work Stream (Plans) 1. Ensure Data sharing serves and is informed by paAents/parAcipants à YourDNAYourSay.org 2. Harmonize processes for handling individual genomic findings of clinical relevance à Return of Results Task Team 3. Clarify Data ProtecAon Rules à Interna>onal data sharing Code of Conduct genomicsandhealth.org
Regulatory and Ethics Work Stream (Plans) Review Work Stream Products • Engage with Driver Projects to idenAfy common and • emerging issues and to harmonize real-world governance: ClinGen Erin Riggs/Danielle AzzariA ENA/EVA/EGA Giselle Kerry MME Monarch Ini>a>ve Melissa Haendel PMI / All of Us Meg Doerr/Kate Blizinsky BRCA Challenge CanDIG VICC Genomics England Laura Riley/Augusto Rendon ICGCmed ARGO Howard Simkevitz/Emily Kirby Australian Genomics Clara Gaff NIH & NCI Commons/GDC Human Cell Atlas ELIXIR Beacon Stephanie Dyke genomicsandhealth.org
Work Stream Name Q&A genomicsandhealth.org

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