All of Us Research Program to test options for returning results

By Christie Rizk, GenomeWeb

The National Institutes of Health’s All of Us Research Program is planning to test different ways for returning results to participants in a pilot program starting later this year.

During a presentation at the Future of Individualized Medicine conference today, Katie Baca-Motes, director of the program’s participant center at the Scripps Research Translational Institute, said that since All of Us was launched in May of last year, it has gained more than 150,000 active participants and collected more than 100,000 biological samples and physical measurements, as well as more than 55,000 electronic health records. Also, participants have completed more than 500,000 online surveys.

Besides conducting research, the program plans to return results to participants. Later this year, for example, the NIH plans to start reporting back pharmacogenetic variants as well as disease-associated variants in 59 genes recommended by the American College of Medical Genetics and Genomics.

Baca-Motes said that in one specific pilot project, the institute will test how best to return lab results from blood tests, starting with 5,000 individuals over the summer and then rolling it out to the wider cohort. A pilot on genomic test results is also planned.

The question right now, she said, is how to communicate with individuals in ways that will keep them engaged over the 10-year period of their participation in All of Us. “We want to be able to reach people and [see] what their barriers are and how they want to engage over time,” she said, noting that doing this successfully will include figuring out people’s motivations for participating in the program and making sure they receive information in a way that makes sense to them. Read more …