Peeking into the black box of privacy - biobank participants on the importance of recognition

Abstract

Biobank research deals with personal information and data from blood and tissue analysis, making the questions of legitimate recruitment of participants and handling of their data to be intimately connected with the issue of privacy. Thus, identification of the privacy interests of biobank participants is vital to the legitimacy of biobank projects. In this article, we ask: How do participants articulate the nature of privacy issues in biobanking? Here we report from a focus group study on biobank participants’ view of privacy and consent in relation to biobank research. Based on our analysis, we found that participants viewed privacy as a concept that describes several dimensions of the fundamental need to be recognized and respected as an individual and as a person. Interestingly, the needs to be recognized and respected were also viewed as the basic purpose of biobank consent.