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National Survey of the Public's Moral Concerns about Biobank Research: 2014 [United States]

Resource Type
  • Tomlinson, Tom (Michigan State University)
  • Kim, Scott (United States Department of Health and Human Services. National Institutes of Health)
  • De Vries, Raymond (University of Michigan)
Publication Date
Funding Reference
  • National Human Genome Research Institute
Free Keywords
biobank; broad consent; moral concern; non-welfare interest; blanket consent; biorepository; informed consent
  • Abstract

    A nationally representative sample of the US adult population was surveyed in June of 2014. GfK Knowledge Networks, a survey research firm, recruited participants from their probability-based internet panel, KnowledgePanel, which represents 97% of U.S. households. See for additional details about the design of the panel and GfK's methodology. The survey was designed to explore the effect of "non-welfare interests" (NWIs) on the public's willingness to donate to a biobank. Non-welfare interests refers to the moral, religious, or cultural concerns that potential donors may have with how their donated biospecimens could be used. Respondents were presented with 7 NWI research scenarios (e.g. research to make abortions safer and more effective) and were then asked whether they would be willing to provide blanket (or broad) consent knowing such research might be conducted. The survey also asked about respondents' preferences for 5 biobank consent policies, ranging from blanket (or broad) consent to real-time specific (or study-by-study) consent. A variety of additional sociodemographic and attitudinal data were collected, including responses to the Research Attitudes Questionnaire (RAQ)--a measure of trust in medical research. The final dataset includes 1,599 responses, a response rate of 60.2%.

Temporal Coverage
  • 2014-06-18 / 2014-06-30
    Time period: Wed Jun 18 00:00:00 EDT 2014--Mon Jun 30 00:00:00 EDT 2014
Geographic Coverage
  • United States
Funding insitution(s): National Human Genome Research Institute (5R01HG007172).
This study is freely available to the general public via web download.

Update Metadata: 2016-08-20 | Issue Number: 1 | Registration Date: 2016-08-20

Tomlinson, Tom; Kim, Scott; De Vries, Raymond (2016): National Survey of the Public's Moral Concerns about Biobank Research: 2014 [United States]. Version: 4. ICPSR - Interuniversity Consortium for Political and Social Research. Dataset.