Privacy Protection and Biobanks: A Conjoint Analysis of Priorities and Preferences of Stakeholder Groups
PTRG received funding from the Office of the Privacy Commissioner's Contributions Program in 2009. This funding allowed PTRG to carry out a project entitled,
"Privacy Protection and Biobanks: A Conjoint Analysis of Priorities and Preferences of Stakeholder Groups"
The executive summary of the final report is shown below:
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, we 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. Our 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.
A copy of the final report is available on request from:
Population Therapeutics Research Group
Faculty of Medicine, Memorial University
St. John's, NL A1B 3V6
(709) 777-8700
ptrg@med.mun.