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All of Us Precision Medicine Initiative – Will people participate?

The All of Us Program poses exciting possibilities for the future of medicine, yet hinges on the participation of at least a million people in the United States. While the prospect of participating in such a wide-reaching and important study may spark interest initially, the question remains of whether people would commit to the participating in the study and to what extent.

To assess the general willingness of participants, the National Institutes of Health (NIH) conducted a study using surveys in mid-2016. The survey found high eagerness among people to participate in the All of Us Program, previously called the PMI Cohort Program. However, motivations for participating were not completely altruistic – many people said they would participate in exchange for information about their own health, including their risk for developing serious diseases.

“We are excited about engaging participants in this historic research effort,” said Kathy L. Hudson, PhD, NIH Deputy Director for Science, Outreach and Policy and a study author. “These survey results are extremely promising — they show that after people learn about the PMI Cohort Program, they’re supportive, and they recognize the value in taking part.”

Of high significance, the study found that people from varying education levels, ethnicities, and socioeconomic statuses had similar levels of interest in participating. Although, those with higher education levels, urban addresses, or higher household incomes showed slightly more willingness to participate than their counterparts. This finding could mean that researchers will have a more difficult time recruiting participants from those other demographic groups.

Of the people who said they supported the All of Us program, but would not be willing to participate, 77% said that it would take up too much of their time. Of those who said they would participate, 42% affirmed that they would commit to participating for at least 10 years.

The survey also asked participants what kind of data they would be willing to contribute if they did enroll in the study. The overwhelming majority (75-85%) of people surveyed said they would be willing to submit biological specimens like blood, urine, and saliva, as well as data from a fitness tracker, genetic information, and details about lifestyle habits.
Rewards expected by respondents if they were to participate in the program included more information about their personal health (90%), monetary compensation (80%), and healthcare services based on their individual results (77%).

When asked about the extent to which participants in All of Us should have decision-making power in the study, 66% responded saying that participants should be involved in the execution of the project, while 76% said researchers and participants should be “equal partners” in the project. Respondents said that participants should have input into what types of research were appropriate, what to do with study results, and which research questions to ask, to name a few.

Survey respondents also had concerns over the privacy of their data. Only 43% said they would be comfortable with having their deidentified data freely available for any researcher to use.
Overall, the survey results indicate that people are interested in enrolling in the study and participating. Clearly, the program will have to provide clear details on benefits, risks, and privacy for participants, and the survey results will give researchers a guide on what it will take for potential participants to enroll.

For more information: http://healthitanalytics.com/news/most-patients-eager-to-join-precision-medicine-initiative-cohort

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