American perceptions on the Precision Medicine Initiative: 6 findings

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Americans, by and large, are optimistic about the Precision Medicine Initiative, and more are eager to participate in it, according to a study in PLoS ONE.

Survey research company GfK conducted the survey between May and June 2015, which included responses from 2,601 participants. The National Institutes of Health Office of Human Subjects Research created the questions, and the NIH funded the survey. Here are six findings from the survey.

1. The vast majority of respondents (79 percent) were in favor of the PMI's cohort study, which seeks to gather the genetic information of at least 1 million Americans. There were no significant differences in support between genders, age groups, races or ethnic groups. However, the survey found fewer years of education, lower income and living outside of metropolitan areas were associated with lower levels of support for the study.

2. Slightly more than half of respondents (54 percent) said they would participate in the study if asked. Again, most demographic groups had similar answers, and at least one out of nine people of each group said they would definitely participate. More education and younger age were associated with increased likelihood of willingness to participate.

3. Approximately one quarter of respondents supported the idea of the study but said they would not participate. Their biggest concerns were that the study would take up too much time, and they were less likely to trust the study to protect their privacy.

4. The survey asked participants to imagine they were considering participating in the study, and then sought insight on their willingness to provide different sources of data. Their responses are outlined below.

  • 73 percent of respondents said they would be willing to provide a blood sample
  • 75 percent were willing to provide urine, hair and saliva samples
  • 75 percent were willing to provide data from an activity tracker
  • 76 percent were willing to provide genetic information
  • 77 percent were willing to provide a family medical history
  • 83 percent were willing to provide soil and water samples from home
  • 84 percent were willing to provide data on lifestyle, diet and exercise

5. When asked why they would or would not participate in the study, 90 percent of respondents said the most important incentive was to learn information about their health. Eighty percent of respondents said they would be incentivized if they received payment for their time, and 77 percent were incentivized by receiving healthcare.

6. If the study went forward, 75 percent of respondents said they would be interested in receiving lab results, 74 percent would be interested in receiving genetic results, and 68 percent would be interested in receiving a copy of their medical records and genetic ancestry information.

More articles on precision medicine:

University of Michigan School of Public Health joins Precision Medicine Initiative 
Three hurdles standing in the way of true precision medicine 
Florida's Memorial Healthcare System joins precision medicine network 

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