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Precision Medicine Initiative Participation Survey: Results Show Americans are Eager to Further Medical Advancements

August 23, 2016


One of the largest questions surrounding President Obama’s Precision Medicine Initiative (PMI) Cohort Program is this: Is it possible to recruit one million U.S. citizens willing to provide an array of health information to further the pursuit of truly personalized medicine?

A National Institutes of Health (NIH) survey released last week confirmed that patients from all walks of life are in fact eager to contribute to meaningful advancements in medicine. In our own Philanthropic Patient Study, iSpecimen found that 83 percent of Americans are willing to allow the use of their remnant clinical specimens in research, and two-thirds would donate an extra tube of blood if asked.

The NIH survey included 2,601 people, with individuals viewing a short description of the PMI Cohort Program and then giving feedback on their willingness to participate as well as preferences concerning data collection and sharing.

Seventy-nine percent of the respondents expressed support for the program, and 54 percent said they would definitely or probably participate if asked. This level of support was constant across racial and ethnic groups as well as other demographic categories.

One particularly noteworthy finding was this: “Respondents expressed high rates of willingness to share many types of personal data, such as blood samples (73 percent), genetic information (76 percent), a family medical history (77 percent), soil and water samples from their home (83 percent) and data on their lifestyle, diet and exercise (84 percent).”

As providers and researchers strive to tailor treatments to patients’ individual lifestyles, environments, and genetics, the donation of specimens and associated information across all demographics will be crucial to unveiling “big-picture” insights.  The good news is that patients recognize this need, and are willing to contribute to the cause– as the NIH survey so clearly demonstrates.

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