title: Personal privacy, public benefits, and biobanks: A conjoint analysis of policy priorities and public perceptions.
abstract: 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 tend to view biobanks as public goods designed primarily for public benefit. As such they tend 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.
authors.affiliation: From the 1Faculty of Medicine, Memorial University; 2Eastern Health Care Corporation; 3Faculty of Business, Memorial University; and 4Newfoundland and Labrador Centre for Health Information, St. John's, Newfoundland, Canada.
authors.forename: Daryl
authors.initials: D
authors.lastname: Pullman
authors.forename: Holly
authors.initials: H
authors.lastname: Etchegary
authors.forename: Katherine
authors.initials: K
authors.lastname: Gallagher
authors.forename: Kathlene
authors.initials: K
authors.lastname: Hodgkinson
authors.forename: Montgomery
authors.initials: M
authors.lastname: Keough
authors.forename: David
authors.initials: D
authors.lastname: Morgan
authors.forename: Catherine
authors.initials: C
authors.lastname: Street