Chair: Dr. Alfonso Valencia

Peter Goodhand

The Changing World of Human Genomic Data Sharing
CEO Global Alliance for Genomics and Health (GA4GH), Canada

Peter Goodhand is a leader in the global health sector, holding senior executive and board member positions in the health research advancement community. Mr. Goodhand played a key role in the creation of the Global Alliance for Genomics and Health (GA4GH) to accelerate progress in genomic research and medicine. In 2018, he was appointed Chief Executive Officer to reflect the changing responsibilities associated with leading a growing organization with an ambitious strategic roadmap. Mr. Goodhand spent two years as President of the Ontario Institute for Cancer Research (OICR) between 2016 - 2018. He was the President and CEO of the Canadian Cancer Society - Canada’s largest health charity. Before joining the charitable sector, Goodhand had a 20 year career in the global medical technology industry, including strategic leadership roles with multinational healthcare companies such as American Cyanamid and Johnson & Johnson and as the founding Managing Director of the Health Technology Exchange (HTX). Goodhand is currently Co-Chair of the Medical and Scientific Advisory Board of Global Genes, Co-Chair of the International 100K+ Cohorts Consortium (IHCC), member of the Global Genomic Medicine Collaboration (G2MC) Steering Committee, member of the Ethical and Scientific Advisory Board of EUCANCan, board director of Rare X, member of advisory committee for the Secure Platform for Health and Genomics, a member of the Advisory Committee for Genome Canada’s All for One rare disease initiative and a member of the Occupational Cancer Research Centre Steering Committee. Mr. Goodhand also had a 12-year experience as a patient advocate, caregiver and navigator throughout his family’s battle with a rare cancer.

Søren Brunak

Longitudinal Phenotypes and Disease Trajectories at Population Scale
Novo Nordisk Foundation Center for Protein Research at the University of Copenhagen, Denmark

Søren Brunak is a leading expert in bioinformatics, systems biology, and medical informatics through invention and introduction of new computational strategies for analysis and integration of biological and clinical data. His group at the University of Copenhagen Medical School is named “Translational Disease Systems Biology” and aims at obtaining mechanistic understanding of disease as well as producing new patient stratification, risk prediction and treatment selection principles. The use of the patient trajectory concept is a major theme that exploits information on the patient-past in terms of prior diseases, comorbidities, prescriptions, lab values, genetics, wearable data, socio-economic data among other types of data.

Panel Discussion:
Peter Goodhand, CEO Global Alliance for Genomics and Health (GA4GH), Canada
Søren Brunak, Novo Nordisk Foundation Center for Protein Research at the University of Copenhagen, Denmark
Barbara Prainsack, University of Vienna, Austria
Ernst Hafen, ETH Zurich, Switzerland

Ernst Hafen

ETH Zürich, Switzerland

Ernst Hafen (*1956), PhD, is a Professor of Systems Genetics at ETH Zurich (Institute of Molecular Systems Biology) and former President of ETH. He has made seminal contributions to the field of developmental and cell biology and has received several prizes. In addition to over 30 years of academic research, he has founded and advised several biotechnology companies and is the president of the BIO-TECHNOPARK Schlieren-Zurich. Ernst Hafen has a strong interest in human genetics and personalized medicine. He posits, that an individual’s control over his or her personal health data will be a key asset for better and more effective health care. He is the initiator and one of the founding members of MIDATA.coop (https://www.midata.coop). Citizen-owned personal data cooperatives enable citizens to securely store, manage and control access to their personal data and form the basis for a fair and sustainable personal data economy.

Barbara Prainsack

Department of Political Science, University of Vienna, Austria

Barbara Prainsack is a Professor at the Department of Political Science at the University of Vienna, where she directs the Centre for the Study of Contemporary Solidarity (CeSCoS), and the interdisciplinary Research Platform Governance of Digital Practices. Her work explores the social, regulatory and ethical dimensions of biomedicine and bioscience, with a focus on personalised and “precision” medicine, citizen participation, and the role of solidarity in medicine and healthcare (most recent book: Personalized Medicine: Empowered Patients in the 21st Century?, NYU Press, 2017). Barbara is also a member of the Austrian National Bioethics Committee and of the European Group on Ethics in Science and New Technologies advising the European Commission, and she chaired the European Science Foundation’s (ESF) Forward Look on Personalised Medicine for the European Citizen (2011-2012, with Stephen Holgate and Aarno Palotie). She is also a member of the British Royal Society of Arts, an elected foreign member of the Danish Royal Academy of Sciences and Letters, and an elected member of the Academia Europaea (AE). She is an affiliate of the Centre de recherche en éthique (CRE), University of Montreal, Canada, and of the Centre for Health, Law, and Emerging Technologies (HeLEX) at the University of Oxford.