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

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.