In order for the Precision Medicine Initiative (PMI) Cohort Program to be successful, people have to participate in the nationwide research effort. According to a recent survey published online in PLOS ONE, they're willing to do that.

The goal is to retrieve data from more than one million participants in the U.S. to better prevent and treat diseases based on individual differences in lifestyle, environment and genetics.

As part of the program, the participants will fill out questionnaires, and give access to EHRs and mobile or wearable devices. They also will undergo a baseline physical evaluation and provide blood and urine samples.
The survey included responses from 2,601 randomly selected people who form a representative sample of the U.S. population. They were asked about their preferences in terms of data collection, data sharing and their participation in certain aspects of the program.

They read a short description of the program and 79 percent stated that they supported the program, with 54 percent "definitely" or "probably" participating if they were asked to.

Younger people with college education and members of the LGBT community were the most willing to participate. Those with less education and those aged 60 and over were not as likely to join.

For those who were willing to participate, 73 percent would share blood samples, 76 percent would share genetic information and 77 percent would share family medical history. However, only 43 percent would be comfortable with sharing social media information.

The majority of the respondents believe it's important for them to help decide the type of research that's appropriate, what to do with the study results and which research questions to answer.

However, the researchers warned that these results should not be used to predict enrollment rates for the program. The people who responded to the survey might have a more positive view of research than the rest of the population.

Health IT Homepage