Nordic eInfrastructure Collaboration Conference 2017 – Workshop on Bioethics of databanks and data sharing

Umeå, Sweden, 29 May

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.

This session will focus on investigating 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