A majority of people would participate in President Barack Obama's Precision Medicine Initiative, a volunteer federal program that collects patient data to advance research, according to a new survey.
The report, conducted by market research firm GfK, gathered answers from 2,036 randomly selected people about the program as part of a 44-question online survey. More than half, 54%, said they would participate in the initiative if asked.
The Precision Medicine Initiative Cohort Program is a multimillion grant program from the National Institutes of Health that seeks to enroll up to 1 million people willing to offer their patient data. The goal is to gather enough data for a longitudinal study that will further diagnostic, treatment and wellness research.
Participants are expected to provide their genetic information, family medical histories and other electronic health record information to a massive database accessible to researchers.
The NIH has handed out nearly $55 million in grants to recruit participants in the program, including to the Veterans Health Administration.
GfK found that the program was generally supported by participants, with 57% saying it probably should be done and 22% saying it definitely should be done. Some declined to participate because they didn't trust the program to protect their health records. About 81% of those who supported the survey but also said they wouldn't participant didn't agree with the statement, “I trust the study to protect my privacy.”
Willingness to participate didn't vary much by race or income of respondents. But those with a bachelor's degree were 11% more likely to participate than those with 0-11 years of schooling. About 60% of those with a Bachelor's degree said they would definitely or probably participate compared with 49% of those with 0-11 years of school.
The authors wrote, “The survey findings don't support the idea that people from communities that have historically been understudied in research are not interested in participating in the cohort.”
All respondents, even those that would decline to participate in the program, were asked which data and samples they would provide to the program. About 73% of respondents would be willing to provide the study with a blood sample, 76% would be willing to provide genetic information and 77% would provide a family history.
