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Privacy Protection and Biobanks: A Conjoint Analysis of Priorities and Preferences of Stakeholder Groups

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Memorial University of Newfoundland




The goal of this project was to better understand the relative importance individuals place upon the privacy of their personal health information (PHI) as opposed to other personal or public goods. In particular, the researchers explored whether and under what conditions individuals might be willing to sacrifice some of their privacy in order to support health research that would contribute to either their personal or the common good.

The researchers’ particular focus was on the privacy of PHI with regard to biobanks. The research methodology involved the development of a “discreet choice task” in which participants were presented with various scenarios in which they had to decide which values were most important to them given the situations described. In particular, participants were challenged to weigh their privacy and confidentiality concerns against potential research that could benefit them personally, their loved ones, or society in general. They were asked to consider as well whether their preferences would change if the research was directed toward either a stigmatizing or non-stigmatizing condition, or whether they were required to give either blanket or specific consent for the future use of their biobanked specimens.

Participants displayed a high level of trust in health researchers, and a relatively low level of concern about the privacy and confidentiality of their PHI in the context of biobanks. They were particularly interested in research that would benefit them personally. This may indicate greater public support for disease specific biobanks where participants would be willing to provide an open-ended consent.

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English only

OPC Funded Project

This project received funding support through the Office of the Privacy Commissioner of Canada’s Contributions Program. The opinions expressed in the summary and report(s) are those of the authors and do not necessarily reflect those of the Office of the Privacy Commissioner of Canada. Summaries have been provided by the project authors. Please note that the projects appear in their language of origin.

Contact Information

Memorial University of Newfoundland
St. John's, NL A1C 5S7
P.O. Box 4200

Tel: (709) 864-8000
Fax: (709) 709-864-4569

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