Digital health encompasses a wide range of novel digital technologies related to health and medicine. Such technologies rely on recent advances in the collection and analysis of ever increasing amounts of data from both patients and healthy citizens. Along with new opportunities, however, come new ethical and policy challenges. These range from the need to adapt current evidence-based standards, to issues of privacy, oversight, accountability and public trust as well as national and international data governance and management. In this talk I discuss specifically data governance and data sharing and I propose ways of addressing the challenges they bring.
Prof. Effy Vayena is a Professor of Bioethics at the Swiss Institute of Technology (ETH Zurich) and renowned expert at the intersection of medicine, data, and ethics. Her work focuses on important societal issues of data and technology as they relate to scientific progress and how it is or should be applied to public and personal health. Vayena completed her education as a social historian with a PhD in Medical History from University of Minnesota. A keen interest in health policy has led her to work with the World Health Organization on ethical questions around reproductive medicine and research. Upon her return to academia, Vayena helped establish and coordinated the PhD program in Biomedical Ethics and Law at University of Zurich and was subsequently awarded a professorship by the Swiss National Science Foundation. As a professor of health policy she founded the Health Ethics and Policy Lab to tackle pressing questions that arise through technological advances such as genomic technologies in healthcare and research. She received her habilitation from the University of Zurich in the field of bioethics and policy and has been appointed a Visiting Professor at the Center for Bioethics at Harvard Medical School and a Faculty Associate at the Berkman Klein Center for Internet & Society at Harvard University, where she was previously a Fellow.