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.
Exposure of nonsmoking pregnant women to ETS is associated with a number of adverse perinatal outcomes including lower birthweight, smaller head circumference and stillbirth, as well as shorter birth length. This information is important for women, their families and healthcare providers, and reinforces the continued need for increased public policy and education on prevention of exposure to ETS.
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.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.