Centre for Research Ethics & Bioethics (CRB)

When is it worth it? – Informational privacy in health care and research

The current debate in Sweden concerning informational privacy in the health care setting is highly polarized. On one side the firm stance taken is that privacy protection constitutes an unwarranted hindrance to good care and medical progress. Opponents just as firmly conceive all suggested weakening of privacy protection as threats to individual rights and dignity, and in a larger perspective also to fundamental democratic values.

These opposing views underlie several ongoing policy-making processes and commissions of inquiry. The recent Swedish Government Official Report Rätt information på rätt plats i rätt tid (SOU 2014:23) proposes new legislation and IT infrastructure concerning the accessibility of medical journals, with obvious privacy implications.  Regarding register based research, the SOU (2014:45) Unik kunskap genom registerforskning advocated a liberalization of how data from individuals may be collected, used and handled, while the European Parliament’s suggestions for a new data protection regulation point in the opposite direction (Läkartidningen 2015). The outcomes of processes such as these have an impact on the informational privacy of patients and citizens. Yet, what is lacking in this context is empirical research on how those actually affected value and evaluate privacy as well as the potential risks and benefits involved.

The main purpose of this project is to explore preferences on informational privacy in health care and register data among the general public as well as for groups of patients with prolonged illness.

The Swedish Agency for Health and Care Services Analysis (Vårdanalys)

The project is commissioned by The Swedish Agency for Health and Care Services Analysis (Vårdanalys). Final report due spring 2017.

Read Swedish project descripion

Collaborators

  • Linnea Wickström Östervall, PhD, CRB
  • Mats G. Hansson, Professor of Biomedical Ethics, CRB
  • Sophie Langenskiöld, Departemtn of Public Health and Caring Sciences, Uppsala University
  • Sara Belfrage, Centre for Healthcare Ethics, LIME, Karolinska Institutet and Vårdanalys