Personal privacy, public benefits, and biobanks: a conjoint analysis of policy priorities and public perceptions.
Genet Med
; 14(2): 229-35, 2012 Feb.
Article
en En
| MEDLINE
| ID: mdl-22261752
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.
Texto completo:
1
Bases de datos:
MEDLINE
Asunto principal:
Opinión Pública
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Bancos de Muestras Biológicas
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Confidencialidad
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Sujetos de Investigación
Límite:
Adult
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Female
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Humans
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Male
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Middle aged
Idioma:
En
Revista:
Genet Med
Asunto de la revista:
GENETICA MEDICA
Año:
2012
Tipo del documento:
Article
País de afiliación:
Canadá