Advancing Global Data Sharing and Complex Considerations

Gail Jarvik, MD, PhD, is the Arno G. Motulsky Endowed Chair in Medicine, Joint Professor of Medicine and Genome Sciences, and Head of the Division of Medical Genetics (only the third since the founding of the division in 1957), an Adjunct Professor of Epidemiology at the UW Medical Center (UWMC) and an Affiliate Member of the Fred Hutchinson Cancer Research Center. She is a Pew Scholar in the Biomedical Sciences, and has been made a Lifetime National Associate of the National Academies, “In recognition of extraordinary service to the National Academy of Science.” She has been designated “A Local Legend from Washington” by Senator Maria Cantwell, in association with the American Medical Women’s Association and the U.S. National Library of Medicine. Her abilities as a scholar and a leader have been recognized by her election as 2021 President of the American Society of Human Genetics. In addition to that service, leading the Division of Medical Genetics and actively pursuing her own research, she continues to be a practicing clinician in Internal Medicine and Medical Genetics.

Taunton Paine is Division Director of Scientific Data Sharing Policy in the Office of Science Policy at the National Institutes of Health. His division is responsible for issues relating to data sharing policy, including the recent NIH Data Management and Sharing Policy and oversight of the NIH Genomic Data Sharing Policy. He works on policy issues related to maximizing return on investment in research and stewardship of scientific data.

Prior to this role, Taunton worked as a Policy Analyst at the NIH, focusing on the protection of human subjects in research and facilitating access to genomic and other scientific and clinical data for research. He previously led the Clinical Research Policy team as a senior policy analyst and advised on matters related to the Common Rule, Certificates of Confidentiality, HIPAA, and other privacy and human participant protections issues.

Peter Goodhand is a leader in the global health sector, holding senior executive and board member positions in the health research advancement community. He currently serves as the Chief Executive Officer of the Global Alliance for Genomics and Health (GA4GH) and President of GA4GH Inc. GA4GH is a policy-framing and technical standards-setting organization, seeking to enable responsible genomic data sharing within a human rights framework. He is currently Co-Chair of the International 100K+ Cohorts Consortium (IHCC), and serves on the governance boards of the Global Genomic Medicine Collaboration (G2MC) and of Rare X. He previously served as President of the Ontario Institute for Cancer Research (OICR) and President and CEO of the Canadian Cancer Society.

Krystal Tsosie (Diné/Navajo Nation) is an Indigenous geneticist-bioethicist and Assistant Professor in the School of Life Sciences at Arizona State University. As an advocate for Indigenous genomic data sovereignty, she co-founded the first US Indigenous-led biobank, a 501c3 nonprofit research institution called the Native BioData Consortium. Her research can be encapsulated in two main foci: Indigenous population genetics and bioethics. In particular, she focuses on bioethical engagement of Indigenous communities in genomics and data science to build trust. As a whole, her interest is in integrating genomic and data approaches to assess Indigenous variation contributing to health inequities.

Noura Abul-Husn is the Vice President of Genomic Health at 23andMe, with a focus on bringing the 23andMe genetics product into clinical care. 23and Me is a personal genomics and biotechnology company best known for providing a direct-to-consumer genetic testing service. As a physician-scientist, she is a results-driven leader and expert in genomic medicine and personalized healthcare. She has led high-impact clinical, educational, and research programs to extend the reach of genomic medicine in both academia and industry. Prior to this role, she served as the founding Chief of the Division of Genomic Medicine in the Department of Medicine, and the founding Clinical Director of the Institute for Genomic Health at Icahn School of Medicine at Mount Sinai.