New technologies enable the accumulation of large amounts of genetic data, biometric data and health records. Also, mass of data from biosensors of individuals or automatic monitoring of patients are being generated. Finally, personal data from social networks and online accounts are being gathered and mined by companies. The proper handling, security and use of such data is important in the current age of internet and information technologies. Safeguards are needed that protect individuals while enabling the use of the data for the benefits of society, research or business. However, many of the ethical and societal questions concerning the storing and sharing of the data are not recognized and unresolved by society, researchers and companies.
The session addressed key ethical and societal issues related to:
- The impact of large-scale data sharing on individual privacy
- The role of informed consent in the management of large-scale data sharing
- Potential ethically-robust solutions for responsible data sharing
9:00 Opening remarks: Arnar Pálsson
9:10 Governing large-scale data sharing through individual consent and privacy - Kjetil Rommetveit – Centre for the Study of the Sciences and the Humanities, University of Bergen.
9:35 Genetic information about children and the limits of legitimate parental decision-making - Daniela Cutas – Department of Historical, Philosophical and Religious Studies, Umea University, and Department of Philosophy, Linguistics and Theory of Science, University of Gothenburg.
9:55 Building a hospital biobank in Finland: practical experiences - Kimmo Pitkänen - The Helsinki Biobank.
10:20 Linking biobank data to multigenerational population data: Experiences from the POPLINK-project in Umeå - Elisabeth Engberg – Centre for Demographic and Aging Research, Umeå University.
10:40 – 11:00 Coffee break
Chair: Isabelle Sylvie Budin Ljøsne
11:00 Biobanks for public good or private gains. The case of deCODE examined - Einar Arnason – Faculty of Life- and Environmental Sciences, University of Iceland.
11:25 Blurring boundaries in the Danish regulation and management of data sharing and new genetics - Mette Hartlev – Faculty of Law, University of Copenhagen
11:50 Large-scale data sharing: Time to rethink informed consent - Deborah Mascalzoni – Centre for Research Ethics & Bioethics, Uppsala University
12:15 Plenary forum with speaker
12:25 Closing remarks: Kirsten Ohm Kyvik, chair of the Nordic committee on bioethics