Personal privacy, public benefits, and biobanks: a conjoint analysis of policy priorities and public perceptions

• Published in: Genetics in medicine Vol. 14; no. 2; pp. 229 - 235
• Main Authors: Pullman, Daryl, Etchegary, Holly, Gallagher, Katherine, Hodgkinson, Kathleen, Keough, Montgomery, Morgan, David, Street, Catherine
• Format: Journal Article
• Language: English
• Published: New York Nature Publishing Group US 01.02.2012; Elsevier Limited
• Subjects: 631/114/2415; 631/208; Adult; Beneficiaries; Biobanks; Biological Specimen Banks - ethics; Biomedical and Life Sciences; Biomedical Research - ethics; Biomedicine; Community Participation - psychology; Confidentiality; Conjoint analysis; Consent; Ethics Committees, Research; Female; Human Genetics; Humans; Laboratory Medicine; Male; Middle Aged; original-research-article; Perception; Privacy; Public Opinion; Public Policy; Research Subjects - psychology; privacy; consent; altruism; biobank; public goods; conjoint analysis
• ISSN: 1098-3600; 1530-0366; 1530-0366
• DOI: 10.1038/gim.0b013e31822e578f

Purpose: To assess the public’s perception of biobank research and the relative importance they place on concerns for privacy and confidentiality, when compared with other key variables when considering participation in biobank research. Methods: Conjoint analysis of three key attributes (research focus, research beneficiary, and privacy and confidentiality) under conditions of either blanket or specific consent. Results: Although the majority of our participants described themselves as private individuals, they consistently ranked privacy and confidentiality as the least important of the variables they considered. The potential beneficiary of proposed research ranked the highest under conditions of both blanket and specific consent. When completing the conjoint task under conditions of blanket consent, participants tended to act more altruistically. Conclusion: The public tends to view biobanks as public goods designed primarily for public benefit. As such it tends to act altruistically with respect to the potential benefits that might accrue from research using biobanked samples. Participants expressed little concern about informational risks (i.e., privacy and confidentiality) should they choose to participate. The manner in which policy priorities are framed could impact participant value preferences with regard to a number of governance issues in biobanking. Genet Med 2012:14(2):229–235