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

Resource Type
Dataset : survey data
  • Tomlinson, Thomas
  • De Vries, Raymond G.
Other Title
  • Archival Version (Subtitle)
Publication Date
Publication Place
Ann Arbor, Michigan
  • Inter-University Consortium for Political and Social Research
Free Keywords
Schema: ICPSR
attitudes; beliefs; biomaterials; biotechnology; cultural perceptions; informed consent; medical ethics; moral judgement; public opinion; religious attitudes
  • Abstract

    The National Survey of the Public's Moral Concerns about Biobank Research was designed to explore the effect of "Non-Welfare Interests" (NWIs) on the public's willingness to donate to a biobank. NWIs refer to the moral, religious, or cultural concerns that potential donors may have with how their donated bio-specimens could be used. Respondents were presented with 7 NWI research scenarios 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. Additional demographic information collected includes religion, political affiliation, age, education, race, gender, household composition, income, marital status, region, and employment status.
  • Methods

    ICPSR data undergo a confidentiality review and are altered when necessary to limit the risk of disclosure. ICPSR also routinely creates ready-to-go data files along with setups in the major statistical software formats as well as standard codebooks to accompany the data. In addition to these procedures, ICPSR performed the following processing steps for this data collection: Checked for undocumented or out-of-range codes..
  • Methods

    Presence of Common Scales: Several Likert-type scales were used
  • Methods

    Response Rates: 60.2 percent
  • Abstract


    • DS1: National Survey of the Publics Moral Concerns about Biobank Research, [United States], 2014
Temporal Coverage
  • Time period: 2014
  • Collection date: 2014-06-18--2014-07-01
  • 2014-06-18 / 2014-07-01
Geographic Coverage
  • United States
Sampled Universe
Adults in the United States. Smallest Geographic Unit: State
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 percent of U.S. households.
Collection Mode
  • web-based survey
This version of the study is no longer available on the web. If you need to acquire this version of the data, you have to contact ICPSR User Support (
Alternative Identifiers
  • 37179 (Type: ICPSR Study Number)
  • Is previous version of
    DOI: 10.3886/ICPSR37179.v1

Update Metadata: 2018-12-13 | Issue Number: 1 | Registration Date: 2018-12-13

Tomlinson, Thomas; De Vries, Raymond G. (2018): National Survey of the Public's Moral Concerns about Biobank Research, [United States], 2014. Archival Version. Version: v0. ICPSR - Interuniversity Consortium for Political and Social Research. Dataset.