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NIH Survey Respondents Give Positive Feedback to Precision Medicine Cohort Program

August 19, 2016
by Rajiv Leventhal
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The study’s most significant incentive is the ability to learn about one’s own health information

A majority of respondents to a recent National Institutes of Health (NIH) survey said they would likely participate in the NIH's Precision Medicine cohort program.

President Obama’s Precision Medicine Initiative (PMI), launched in January, plans to build a comprehensive scientific knowledge base to implement precision medicine on a larger scale by launching a national cohort study of a million or more Americans. As such, the national cohort study, tasked to NIH and other federal agencies, will aim to foster open, responsible data sharing, maintain participant privacy, and build on strong partnerships between researchers and participants.

According to NIH, many factors have converged to make now the right time to begin a program of this scale and scope — Americans are engaging in improving their health and participating in health research more than ever before, electronic health records (EHRs) have been widely adopted, genomic analysis costs have dropped significantly, data science has become increasingly sophisticated, and health technologies have become mobile.

Of the 2,601 valid responses to the NIH survey, 79 percent supported the proposed study, and 54 percent said they would definitely or probably participate if asked. The rest of the participants said they probably (30 percent) or definitely (16 percent) would not take part. 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.

According to the NIH authors, 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. Overall, respondents were generally interested in taking part in several governance functions of the cohort study.

One in four respondents said that they supported the idea of the study, but also said they would not participate if they were asked. People who supported the study but would not participate if asked were more than twice as likely as those who would participate to agree that the study “would take too much of my time” (77 percent vs 30 percent), and were less likely than those who would take part to agree with the statement “I trust the study to protect my privacy” (51 percent vs. 81 percent, respectively).

The authors noted that the findings suggest that certain groups including older Americans and those with lower socioeconomic status may require additional engagement if they are to take part. However, the survey findings do not support the idea that people from communities that have historically been understudied in research are not interested in participating in this cohort, they stated.

They further said that 30 percent of survey respondents shifted their opinions about their willingness to take part in the study from the beginning to the end of the survey. “This suggests that considering some of the potential risks and benefits of participation may inform and influence people’s decision to take part. Engagement before and during study recruitment may help people make better informed decisions about participation.”

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