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NIH Survey Finds Broad Support for Precision Medicine Initiative Cohort Program

NEW YORK (GenomeWeb) – Americans widely support plans for the Precision Medicine Initiative (PMI) Cohort Program, which aims to establish a voluntary national research cohort of 1 million people who will provide sequencing and other biological data, according to a recent survey conducted by the National Institutes of Health.

The online survey, which was offered in both English and Spanish, included responses from 2,601 people selected randomly from a representative sample of the US population. Respondents were provided with a short description of the PMI Cohort Program and then asked questions in order to gauge their support for the program and level of interest in participating.

Overall, 79 percent of respondents supported the cohort program, while 54 percent said they would "definitely or probably participate if asked," according to the survey findings, which appeared in Plos One.

"These survey results are extremely promising," Kathy Hudson, NIH deputy director for science, outreach, and policy, said in a statement. "They show that after people learn about the PMI Cohort Program, they're supportive and they recognize the value in taking part."

Notably, support for the cohort program and interest in participation was consistent among demographic groups — findings that "do not support the idea that people from communities that have historically been understudied in research are not interested in participating in this cohort," the paper's authors wrote.

Still, the survey is not without its limitations, the authors cautioned. Its results cannot be used to accurately predict what portion of American adults would take part in the PMI Cohort Program if asked, in part because people who chose to respond to the survey may be "more favorably inclined toward research participation than the general population."

The PMI study "should not be expected to enjoy a 54 percent success rate in its recruitment" based on the survey data, they wrote.

Beyond enrollment, retaining cohort program participants will be key to the PMI's overall success, they added.

"To sustain participants' commitment over the long term, researchers must continue working as part of the study communities," Dave Kaufman, program director at the National Human Genome Research Institute, said in the statement. "Participants offer terrific ideas and insights when researchers earn their trust."

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