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Survey shows extensive support for nationwide precision medicine study

A majority of adults expressed support of and willingness to participate in the Precision Medicine Initiative’s national research effort, according to recent survey data published in PLOS ONE.

“Precision medicine is an emerging approach to disease prevention, diagnosis and treatment that takes into account differences between individuals. While not new, to date it has only been applied to certain conditions,” David J. Kaufman, PhD, of NIH’s National Human Genome Research Institute, and colleagues wrote. “The Precision Medicine Initiative (PMI) 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.”

Between May and June of 2015, a population-based sample of adults from the United States completed a 44-question online survey measuring the participants’ opinions on PMI’s planned national study. Information from the survey was used to inform how the proposed cohort study would be designed.

Each respondent also viewed one of eight randomly selected scenarios that described study consent and data sharing, and then responded whether they would consent to the study.

A total of 2,601 responses were validated and analyzed.

Survey results showed that 79% of participants supported the study and 54% reported that they would most likely be willing participate if asked (“definitely,” 14%; “probably,” 40%). Only slight variation in support for and interest in participating in the study was detected among demographic groups. Respondents who were younger, identified as LBGT, and/or completed more years of education were among those who were significantly more likely to take part in the study if asked. Overall, learning information about one’s health from the study was the strongest motivator in respondents’ willingness to partake.

When the consent scenarios included a transparency statement about how samples and data were going to be used, no significant difference in willingness to share data among the four consent models was observed (broad, study-by-study, menu and dynamic consent). Respondents expressed a general interest in being involved in several governance tasks of the prospective study.

“These survey results suggest that people from all walks of life will be interested in the cohort program,” Kaufman said in a press release about the survey. “But it may take some more thought and effort to engage older people and those with fewer years of education. These results were helpful in identifying areas where the PMI Cohort Program may want to focus outreach efforts, beyond the communities that have been historically underrepresented in research.” – by Alaina Tedesco

Disclosure: The survey was funded by the Foundation for National Institutes of Health.