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

Principal Investigator(s):  View help for Principal Investigator(s) Tom Tomlinson, Michigan State University; Scott Kim, United States Department of Health and Human Services. National Institutes of Health; Raymond De Vries, University of Michigan

Version:  View help for Version V4

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National Survey of the Public's Moral Concerns about Biobank Research: 2014 [United States] 0

Project Citation: 

Tomlinson, T., Kim, S., & De Vries, R. (2016). National Survey of the Public’s Moral Concerns about Biobank Research: 2014 [United States] [Data set]. Inter-university Consortium for Political and Social Research [distributor]. https://doi.org/10.3886/E65863V4

Project Description

Summary:  View help for Summary 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 http://www.knowledgenetworks.com/ganp/docs/KnowledgePanel(R)-Design-Summary.pdf 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%.


Scope of Project

Subject Terms:  View help for Subject Terms biobank; broad consent; moral concern; non-welfare interest; blanket consent; biorepository; informed consent
Geographic Coverage:  View help for Geographic Coverage United States


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V4 [2016-06-24]

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