Dialog Box

Ethics, Policy and Governance Working Group

Key Objectives: 

The Ethics, Policy and Governance Working Group will build on the activities of the pre-existing ICGC EGC and will continue to review, advise and guide on the pertinent core bioethics concerns related to ICGC-ARGO. The principles and approaches developed by the Ethics and Policy Committee for the first phase of ICGC are being updated for ICGC-ARGO through the work of the new ethics and Governance Committee and will reflect the new aims and goals that will guide ICGC-ARGO in its future activities. Sharing international data will follow agreed international standards and best practices that take into account the rights and expectations of the individuals involved, while reflecting the right to share in scientific progress. ICGC-ARGO has adopted the GA4GH Framework for Responsible Sharing of Genomic and Health-Related Data, on which the effective and responsible sharing of genomic and clinical data can be built. One of the flagship projects of this organization is the BRCA Challenge, which is pooling data on BRCA genetic variants (e.g., sequence variation, phenotype and scientific evidence) from around the world for shared analysis. ICGC-ARGO will liaise with such projects to learn from their experience and integrate appropriate measures into its own policies and procedures.


Working Group Contact: 

Carol Nicol

ICGC-ARGO Secretariat, Glasgow 

Email: secretariat@icgc-argo.org


Current Membership List:

Name

Institution

Country

Yann Joly

McGill University

Canada

Anne Cambon-Thomsen

European Commission FP7

France

Yoon-Jung Chang

National Cancer Centre

South Korea

Kazuto Kato

RIKEN; NiBio

Japan

So Yoon Kim

Yonsei University Health System

South Korea

Chris Lawerenz

Federal Ministry of Education and Research

Germany

John D McPherson

University of California Davis

USA

Treasa McPherson

University of California Davis

USA

Fruzsina Molnar-Gabor

Max-Planck Institute


Pilar Nicolas

University of Verona, Italian Ministry of Education, University and Research

Spain

Rajiv Sarin

Ministry of Science and Technology

India

Reiner Siebert

Federal Ministry of Education and Research

Germany

Susan Wallace

University of Leicester

UK

Eva Winkler

Hospital University Heidelberg

German

Nikolajs Zeps

Epworth Healthcare

Australia



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