National Survey of the Public's Moral Concerns about Biobank Research, [United States], 2014 (ICPSR 37179)

Version Date: Dec 13, 2018

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Principal Investigator(s):
Thomas Tomlinson, Michigan State University; Raymond G. De Vries, University of Michigan

https://doi.org/10.3886/ICPSR37179.v1

Version V1

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Summary

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.

Citation

Tomlinson, Thomas, and De Vries, Raymond G. National Survey of the Public’s Moral Concerns about Biobank Research, [United States], 2014. Inter-university Consortium for Political and Social Research [distributor], 2018-12-13. https://doi.org/10.3886/ICPSR37179.v1

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Subject Terms

Geographic Coverage

Smallest Geographic Unit

State

Distributor(s)

Inter-university Consortium for Political and Social Research
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Time Period(s)

2014

Date of Collection

2014-06-18 -- 2014-07-01
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Sample

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.

Time Method

Cross-sectional

Universe

Adults in the United States.

Unit(s) of Observation

Individual

Data Type(s)

Mode of Data Collection

Response Rates

60.2 percent

Presence of Common Scales

Several Likert-type scales were used

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Original Release Date

2018-12-13

Version History

2018-12-13 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.

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Weight

The data are not weighted, however, the weight variable WEIGHT has been included and must be used in any analysis.

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Notes