WP1 - Privacy
Workpackage leader: Jan Helge Solbakk (University of Oslo)
This workpackage wants to analyse the concept of confidentiality in relation to two types of biobanks (small scale and population based), to analyse what the implications of confidentiality are in biobanks with multiple uses, and in biobanks that have changed use since their establishment. In addition, it wants to analyse the links between confidentiality and a more general right on the part of tissue or DNA donors to control their sample or information (e.g. as an expression of their right to self-determination) and the links between confidentiality and a more general right on the part of tissue or DNA donors to privacy. Finally, it wants to analyse the meaning of confidentiality in relation to donors who are dead or untraceable.
To realize these objectives, we will first perform a comprehensive literature review of the literature on medical confidentiality, with special focus on confidentiality in research and with regard to databases and biobanks. In this review we will also include relevant legal and social science literature, as well as literature on the concept of privacy both as it is understood in US jurisprudence, and as it is understood as an ethical concept. The review will aim to provide 1) a typology of the justifications of confidentiality, 2) a typology of the scope of confidentiality (e.g. what information does it cover, who has the duty and to whom is it owed) and 3) a typology of possible exceptions to confidentiality).
Based on the literature review and the typology of biobanks utilised in the project we will then proceed to provide an analysis of the implications of different conceptions of confidentiality for different kinds of biobanking. This analysis will draw on the work done in other workpackages.
The conceptual analysis will be further informed by 10 in depth interviews with persons involved in biobanking with a focus on the importance of confidentiality in biobanking and their understanding of this concept. The interviews will be transcribed and analysed using standard qualitative research methodologies.
