A population survey of perspectives on broad consent and data sharing in biomedical research

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Background: To assess the impact of the U.S. Department of Health and Human Services Advanced Notice of Proposed Rulemaking (ANPRM) on biomedical research, eMERGE investigators have conducted a survey in a random sample of over 80,000 individuals, stratified by age, gender, race/ethnicity, and location (geocoded), who have received health care at one of the following MERGE institutions in the past 2 years: Boston Children’s Hospital; Cincinnati Children’s Hospital Medical Center; Children’s Hospital of Philadelphia; Essentia Institute of Rural Health; Geisinger Health System; Kaiser Permanente Washington (w/ University of Washington); Icahn School of Medicine at Mount Sinai; Marshfield Clinic; Mayo Clinic; Northwestern University; and Vanderbilt University.

Aims: (1) Assess respondents’ willingness to provide broad consent for sharing of biosamples and data; (2) Gain insights into what biospecimen and biobanking-related practices impact willingness to provide broad consent; and (3) Compare attitudes towards broad vs. specific consent and open vs. controlled data-sharing models.

Survey development: After systematic, extensive review of existing literature, a survey instrument was developed to query participants on their views toward broad consent and data sharing, using one of three possible data sharing scenarios. The instrument was pretested and refined through cognitive interviews in a convenience sample of up to 10 individuals per site at 6 different sites to ensure that all content within the survey was clear and comprehensible. Respondents were randomly assigned to 1 of 3 hypothetical scenarios:
(A) specific consent + controlled data-sharing
(B) broad consent + controlled data-sharing
(C) broad consent + open data-sharing
Measures included willingness to participate in a biobank; willingness to enroll one’s child in a biobank; reasons for being un/willing to participate; trust; and attitudes regarding privacy.

Sampling strategy: A stratified sampling approach used census information to oversample individuals with low education, from rural areas, and minorities.

Pilot results:  The survey was piloted to 1500 individuals in the fall of 2014 to assess the wording of the questionnaire, review response patterns, and provide preliminary summaries on biobank views. The sampling strata classified the 163 survey respondents as 26% Hispanic, 13% African American, 46% from rural areas and 26% with less than a high school education. The survey-adjusted average willingness to participate score (1=not at all, 5=yes, definitely) was 3.5 (95% CI: 2.9-4.1).

Current status: Modification of the survey was made based on the pilot and the full survey was sent to over 80,000 individuals beginning in April of 2015. Final data files were received in September 2015. The data is currently being analyzed overall and stratified by multiple factors that may affect the results.

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