A Survey of U.S Adults’ Opinions about Conduct of a Nationwide Precision Medicine Initiative® Cohort Study of Genes and Environment

Published: August 17, 2016
http://dx.doi.org/10.1371/journal.pone.0160461

Abstract

Objectives

A survey of a population-based sample of U.S adults was conducted to measure their attitudes about, and inform the design of the Precision Medicine Initiative’s planned national cohort study.

Methods

An online survey was conducted by GfK between May and June of 2015. The influence of different consent models on willingness to share data was examined by randomizing participants to one of eight consent scenarios.

Results

Of 4,777 people invited to take the survey, 2,706 responded and 2,601 (54% response rate) provided valid responses. Most respondents (79%) supported the proposed study, and 54% said they would definitely or probably participate if asked. Support for and willingness to participate in the study varied little among demographic groups; younger respondents, LGBT respondents, and those with more years of education were significantly more likely to take part if asked. The most important study incentive that the survey asked about was learning about one’s own health information. Willingness to share data and samples under broad, study-by-study, menu and dynamic consent models was similar when a statement about transparency was included in the consent scenarios. Respondents were generally interested in taking part in several governance functions of the cohort study.

Conclusions

A large majority of the U.S. adults who responded to the survey supported a large national cohort study. Levels of support for the study and willingness to participate were both consistent across most demographic groups. The opportunity to learn health information about one’s self from the study appears to be a strong motivation to participate.

Citation: Kaufman DJ, Baker R, Milner LC, Devaney S, Hudson KL (2016) A Survey of U.S Adults’ Opinions about Conduct of a Nationwide Precision Medicine Initiative® Cohort Study of Genes and Environment. PLoS ONE 11(8): e0160461. doi:10.1371/journal.pone.0160461

Editor: Alejandro Raul Hernandez Montoya, Universidad Veracruzana, MEXICO

Received: January 18, 2016; Accepted: July 19, 2016; Published: August 17, 2016

This is an open access article, free of all copyright, and may be freely reproduced, distributed, transmitted, modified, built upon, or otherwise used by anyone for any lawful purpose. The work is made available under the Creative Commons CC0 public domain dedication.

Data Availability: With respect to our ability to share the data, the ethos of the Precision Medicine Initiative is to share data openly. However, in this instance, the survey data used in the paper were collected under a contractual agreement with the survey research company GfK. GfK carries out the survey on a sample drawn from a large population-based sample that GfK recruits and maintains. GfK has an ethical and contractual obligation to protect the privacy of its panel members and their households. To this end GfK passes these obligations on to its clients. We are bound ethically and legally not to share respondent identifiers, or data that could be linked to the larger dataset we possess that would allow for the identification of respondents or households. Requests for collaborations to examine aggregate analyses of these data are welcome and can be sent to dave.kaufman@nih.gov.

Funding: The Foundation for National Institutes of Health directly paid for GfK to field the survey. The authors themselves received no specific funding for the work. FNIH did not participate in data collection, analysis, decisions to publish or preparation of the manuscript. They were involved in discussions about the logistics of study design but did not influence survey content.

Competing interests: During the study and at the time of publication, DK worked at the National Institutes of Health (NIH) which is sponsoring and developing the PMI cohort study. He was not involved in those efforts. During the study and at the time of publication, KH, RB, and LM worked at the NIH which is sponsoring and developing the PMI cohort study, and were directly involved in development of the PMI cohort study. SD worked at the NIH at the time the survey was developed where she worked directly on development of the PMI study. At the time of publication, she worked at the White House where she was involved in some aspects of developing the PMI study. This does not alter the authors' adherence to all PLOS ONE policies on data sharing and materials.