The Role of Privacy and Informed Consent in Danish and Swedish Biobank Practices: Exploring Donor Perspectives

Abstract

Medical research using genetic information and biobanks, like many other aspects of medical research, has been regulated predominantly on a presumption that informed consent is the most effective vehicle for protecting the individual rights and freedoms, including privacy, of the research participants. The English word and concept ‘privacy’ can be difficult to translate, and this paper explores what privacy might be seen as relating to in a Swedish and Danish context. It is argued that concerns about what in English is called ‘privacy’ in Sweden and Denmark also relate to conceptions of ‘home’ and includes not only a private right but social duties too. Partly as a consequence of different political and social responses to biobank regulation in the two countries, there are some differences in the number and type of studies available. The remainder of the paper considers the findings of some published studies, most of which focus on attitudes towards informed consent. It is argued that some of the differences between the two countries indicated by published studies might reflect different policy landscapes and not the attitudes of the respective publics.