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.

Building on the activities of the pre-existing ICGC Ethics and Governance Committee, 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. The AEGC works closely with the Patient and Public Involvement and Engagement Working Group (PPIE)

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 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 aspires to achieve the balance between the value of data sharing and the rights of participants.


Working Group Leader(s) Name Institution and contact:

Rita Lawlor

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

Rita T. Lawlor is a Health Research, ICT and privacy professional with 25 years’ management experience and a proven record of leading health and research innovation and delivering results. She has held Directorships and leading positions in biobanking and research organizations and has extensive international experience.

Rita Lawlor is co-founder of the ARC-Net applied cancer research centre where she coordinates research activities and runs the cancer biobank.

She has extensive project management experience and managed the Italian initiative in ICGC and is co-PI for the ARGO project. She currently coordinates the national Italian Cancer Research Association funded project “Clinically applicable biomarkers to early diagnosis, patient risk stratification and therapeutic response in pancreas cancer”.

She is a member of the steering committee of BC-NET (Biobank Cohort Network of Low Middle Income Countries) network of IARC (International Association for Research on Cancer). She is a former director of ISBER, International Society for Biological and Environmental Repositories (www.isber.org) and is past president of ESBB, the European, Middle Eastern and African Society for Biopreservation and Biobanking (www.esbb.org). She is currently on the board of the Italian Foundation for Pancreas diseases (FIMP).

Rita is originally a Computer Science graduate with a doctorate in translational biomedical sciences in Oncological Pathology. More recently she was conferred with a fellow of Information Privacy from IAPP (International Association of Privacy Professionals) and is chair of the ISBER GDPR Task Force.

Her current research interests are in molecular diagnostic markers and therapeutic targets and the role of cancer heterogeneity and molecular characterization of samples in the application of personalized medicine.


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

Amber Johns

Garvan Institute of Medical Research

Australia

Kazuto Kato

Osaka University

Japan

Hannah Kim

Yonsei University

South Korea

Rita Lawlor

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

Italy

John D McPherson

University of California Davis

USA

Treasa McPherson

American Cancer Society

USA

Pilar Nicolas

Spanish Ministry of Science and Innovation

Spain

Reiner Siebert

University Hospital of Ulm

German

Nikolajs Zeps

Monash University

Australia





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