Two large-scale surveys on community attitudes toward an opt-out biobank

Authors

  • Kyle B. Brothers,

    Corresponding author
    1. Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, Tennessee
    2. Department of Pediatrics, Vanderbilt University School of Medicine, Nashville, Tennessee
    • Center for Biomedical Ethics and Society, 2525 West End Avenue, Suite 400, Nashville, TN 37203.
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  • Daniel R. Morrison,

    1. Department of Sociology, Vanderbilt University, Nashville, Tennessee
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  • Ellen W. Clayton

    1. Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, Tennessee
    2. Department of Pediatrics, Vanderbilt University School of Medicine, Nashville, Tennessee
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  • How to Cite this Article: Brothers KB, Morrison DR, Clayton EW. 2011. Two large-scale surveys on community attitudes toward an opt-out biobank. Am J Med Genet Part A 155: 2982–2990.

Abstract

Although US research regulations allow for de-identified biorepositories to be developed without formal informed consent from the patients whose samples are included, it is unknown whether this model will be well-received by community members. Based on early evidence that such a biobank could be successful if patients who object have the opportunity to opt-out, Vanderbilt University developed a biorepository named BioVU that follows this model. This study reports the findings from two large-scale surveys among communities important to this biorepository. In the first, a population-based phone survey of Nashville residents, we found that approval for BioVU is high (93.9%) and that this approval is similar among all population groups. A hypothetical biobank that does not obtain some form of written permission is much less well received. In the second, an online survey of Vanderbilt University faculty and staff, we found a higher level of support for BioVU (94.5%) among faculty and staff working throughout the university. In this survey, employees least likely to approve of BioVU are those employees who prefer not to receive medical care at Vanderbilt University. These surveys demonstrate the highest level of approval for a genomic biobank ever reported in the literature, even among groups traditionally cautious about such research. This high level of approval may reflect increasing comfort with genomic research over time combined with the effect that trust in a specific institution can have on approval for an operating biobank compared with approval of a hypothetical biobank. © 2011 Wiley Periodicals, Inc.

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