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

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 f...

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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
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ISSN	1098-3600 1530-0366 1530-0366
DOI	10.1038/gim.0b013e31822e578f

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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 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
AbstractList	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. 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. Conjoint analysis of three key attributes (research focus, research beneficiary, and privacy and confidentiality) under conditions of either blanket or specific consent. 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. 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. 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 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 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.PURPOSETo 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.Conjoint analysis of three key attributes (research focus, research beneficiary, and privacy and confidentiality) under conditions of either blanket or specific consent.METHODSConjoint analysis of three key attributes (research focus, research beneficiary, and privacy and confidentiality) under conditions of either blanket or specific consent.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.RESULTSAlthough 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.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.CONCLUSIONThe 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.
Author	Morgan, David Keough, Montgomery Street, Catherine Pullman, Daryl Gallagher, Katherine Etchegary, Holly Hodgkinson, Kathleen
Author_xml	– sequence: 1 givenname: Daryl surname: Pullman fullname: Pullman, Daryl email: dpullman@mun.ca organization: Faculty of Medicine, Memorial University, St. John’s – sequence: 2 givenname: Holly surname: Etchegary fullname: Etchegary, Holly organization: Eastern Health Care Corporation, St. John’s – sequence: 3 givenname: Katherine surname: Gallagher fullname: Gallagher, Katherine organization: Faculty of Business, Memorial University – sequence: 4 givenname: Kathleen surname: Hodgkinson fullname: Hodgkinson, Kathleen organization: Faculty of Medicine, Memorial University, St. John’s – sequence: 5 givenname: Montgomery surname: Keough fullname: Keough, Montgomery organization: Faculty of Medicine, Memorial University, St. John’s – sequence: 6 givenname: David surname: Morgan fullname: Morgan, David organization: Newfoundland and Labrador Centre for Health Information – sequence: 7 givenname: Catherine surname: Street fullname: Street, Catherine organization: Faculty of Medicine, Memorial University, St. John’s
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Cites_doi	10.69645/TGFJ5658 10.1038/news.2008.1315
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Hansson (10.1038/gim.0b013e31822e578f_bb0065) Tassé (10.1038/gim.0b013e31822e578f_bb0055) Knoppers (10.1038/gim.0b013e31822e578f_bb0040) Caulfield (10.1038/gim.0b013e31822e578f_bb0140) 10.1038/gim.0b013e31822e578f_bb0025 Hansson (10.1038/gim.0b013e31822e578f_bb0095) 10.1038/gim.0b013e31822e578f_bb0010 Hollegaard (10.1038/gim.0b013e31822e578f_bb0030) Mullen (10.1038/gim.0b013e31822e578f_bb0085) Loft (10.1038/gim.0b013e31822e578f_bb0015) Ryan (10.1038/gim.0b013e31822e578f_bb0100) Mladovsky (10.1038/gim.0b013e31822e578f_bb0155) Hofman (10.1038/gim.0b013e31822e578f_bb0130) Kohane (10.1038/gim.0b013e31822e578f_bb0135) Chadwick (10.1038/gim.0b013e31822e578f_bb0070) Viney (10.1038/gim.0b013e31822e578f_bb0150) Murphy (10.1038/gim.0b013e31822e578f_bb0090) 2009; 99 Eriksson (10.1038/gim.0b013e31822e578f_bb0125) Knoppers (10.1038/gim.0b013e31822e578f_bb0075) Elger (10.1038/gim.0b013e31822e578f_bb0045) Caulfield (10.1038/gim.0b013e31822e578f_bb0050) 10.1038/gim.0b013e31822e578f_bb0035 10.1038/gim.0b013e31822e578f_bb0110 10.1038/gim.0b013e31822e578f_bb0020 10.1038/gim.0b013e31822e578f_bb0120 Hoeyer (10.1038/gim.0b013e31822e578f_bb0060) Kaufman (10.1038/gim.0b013e31822e578f_bb0115) Ursin (10.1038/gim.0b013e31822e578f_bb0080) 10.1038/gim.0b013e31822e578f_bb0160 Haddow (10.1038/gim.0b013e31822e578f_bb0105) 2010; 1 Pullman (10.1038/gim.0b013e31822e578f_bb0145) 2010; 4.2
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Snippet	Purpose: To assess the public’s perception of biobank research and the relative importance they place on concerns for privacy and confidentiality, when... To assess the public's perception of biobank research and the relative importance they place on concerns for privacy and confidentiality, when compared with... Purpose:To assess the public’s perception of biobank research and the relative importance they place on concerns for privacy and confidentiality, when compared... Purpose: To assess the public's perception of biobank research and the relative importance they place on concerns for privacy and confidentiality, when...
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SubjectTerms	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
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Title	Personal privacy, public benefits, and biobanks: a conjoint analysis of policy priorities and public perceptions
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