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

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