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

Authors

  • Lars Øystein Ursin NTNU
  • Kristin Solum Steinsbekk

DOI:

https://doi.org/10.5324/nje.v21i2.1502

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

Downloads

Download data is not yet available.

Downloads

Published

2012-04-16

How to Cite

Ursin, L. Øystein, & Steinsbekk, K. S. (2012). Peeking into the black box of privacy – biobank participants on the importance of recognition. Norsk Epidemiologi, 21(2). https://doi.org/10.5324/nje.v21i2.1502

Issue

Vol. 21 No. 2 (2012): Biobanking: From vision to reality

Section

Articles

License

Norsk Epidemiologi licenses all content of the journal under a Creative Commons Attribution (CC-BY) licence. This means, among other things, that anyone is free to copy and distribute the content, as long as they give proper credit to the author(s) and the journal. For further information, see Creative Commons website for human readable or lawyer readable versions.

Authors who publish with this journal agree to the following terms:

1. Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.

2. Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.

3. Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work (See The Effect of Open Access).