Dialog Box

Ethics, Policy and Governance Working Group

Key Objectives: 

The AEGC aims to support ICGC ARGO with ethical principles and guidelines that ensure appropriate data processing from patients to researchers in accordance with ethical, legal, and social considerations.

The Ethics and Governance Committee of ICGC has allowed it to successfully develop the unparalleled principles and guidelines for international data sharing over the past decade. Building on the activities of the pre-existing ICGC Ethics and Governance Committee (EGC), the AEGC will continue to investigate, review, advise, and guide on the pertinent core bioethics concerns related to ICGC ARGO. This will help ensure that the sharing of data from different jurisdictions follows international standards and best practices that respect the rights and expectations of the individuals involved, while reflecting the right to share in scientific progress.

Today, ICGC ARGO exists in a new landscape with greater challenges. On the one hand, members need more clinical data. This must be countered by external factors such as changes to privacy regulations and research transparency. The AEGC serves a special purpose as a developer of practical guidelines and principles for the support of ICGC ARGO working groups. New regulations and the sheer complexity of modern governance have resulted in a change to the data access operating model. The shift has seen an emphasis placed on the privacy protection and methods for handling data expansion on a global scale, where clinical benefits to genomic data sharing must also be considered. The AEGC understands the balance that exists between the value of data set sharing and rights of participants.


Working Group Leader(s) Name Institution and contact:

Dr Yoon-Jung Chang

National Cancer Control Institute, South Korea

Dr. Chang is a physician scientist who holds the position of Head, Division of Cancer Control & Policy, National Cancer Control Institute, South Korea



Working Group Contact: 

Carol Nicol

ICGC ARGO Secretariat, Glasgow 

Email: secretariat@icgc-argo.org


Current Membership List:

Name

Institution

Country

Yoon-Jung Chang

National Cancer Centre

South Korea

Yann Joly

McGill University

Canada

Anne Cambon-Thomsen

European Commission FP7

France

Rita Lawlor

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

Italy

Zhaozheng Guo

BGI/CNGB

China

Hubert Kang

BGI/CNGB

China

John D McPherson

University of California Davis

USA

Treasa McPherson

University of California Davis

USA

Fruzsina Molnar-Gabor

Max-Planck Institute


Pilar Nicolas

Spanish Ministry of Science and Innovation

Spain

Mark Phillips

McGill University

Canada

Reiner Siebert

Federal Ministry of Education and Research

Germany

Eva Winkler

Hospital University Heidelberg

German

Nikolajs Zeps

Epworth Healthcare

Australia

Ma'n Zawati

McGill University

Canada



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