NEW YORK (GenomeWeb) – In a workshop to be held by the National Institutes of Health later this week, experts from the government, academic research, healthcare organizations, and industry will discuss ways to build and interact with the national research cohort of more than 1 million individuals that is part of President Obama's $215 million Precision Medicine Initiative.
In advance of the two-day workshop, to be held Feb. 11-12, four previously assembled working groups identified challenges and opportunities related to the task of building the cohort, and published their ideas in four white papers.
The four reports, available here, focus on cohort identification and participant recruitment; participant engagement, data privacy, and novel ways of returning information to participants; data collection and mobile technologies; and opportunities and challenges related to the use of electronic health records for research. They will form the basis for discussion at the workshop and do not represent the NIH's view.
In his announcement of the Precision Medicine Initiative on Jan. 30, President Obama called for the creation of a national research cohort of more than a million volunteers who will share genomic data, lifestyle information, biological samples, and phenotypic data through their electronic health records. New NIH funding of $130 million in fiscal year 2016 would support the effort.
Building the cohort will almost certainly involve existing research cohorts, both public and private, an idea the workshop will likely explore further. According to the white paper from the working group focusing on cohort building, it would be cost-prohibitive to collect a cohort from scratch, and it would take too long to obtain results. Combining existing longitudinal studies is therefore a cost-effective solution, they wrote. In parallel, cohorts recruited through regional healthcare providers and professional societies could be asked to join.
A preliminary NIH inventory report has already identified 50 large-scale research cohorts, comprising approximately 12.3 million individuals enrolled in 65 studies, according to the document.
These include 42 federally funded studies, six hospital-based cohort studies, and nine hospitals and healthcare systems with research-oriented databases of their patients. "The assembly of a consortium of cohorts from these individual collections is clearly possible," the working group, chaired by Eric Boerwinkle of the University of Texas Health Science Center and Michael Lauer of the National Heart Lung and Blood Institute, noted.
Eric Green, director of the National Human Genome Research Institute, discussed the upcoming workshop in his report to the National Advisory Council for Human Genome Research yesterday. During a Q&A session following his report, a participant said it will be critical for the Precision Medicine research cohort to adequately represent minorities, a concern the white paper also addressed. "Existing US research cohorts do not completely represent the American population, and do not mirror projected demographic changes in the American population," the paper stated.
Asked whether the US Department of Veterans Affairs' Million Veteran Project (MVP), which plans to enroll a million veterans by 2017, will be considered for the Precision Medicine cohort, Green said that project will indeed be part of the discussion. One of the workshop's presentations will focus on the MVP cohort, according to the agenda.
Cohorts from private research efforts may be considered as well. For example, the list of workshop participants includes representatives from the Geisinger Health System and from Regeneron Pharmaceuticals, which teamed up a year ago to analyze the genomes of 100,000 Geisinger patients.
Also participating in the workshop will be 23andMe, which boasts a cohort of 850,000 customers and recently partnered with Genentech for a Parkinson's disease study.
Reflecting the challenges of collecting data from research participants and communicating with them on an ongoing basis, the workshop will also host participants from the computer and telecommunications industry, including Google Life Sciences, Apple, Intel, and Verizon.
Also represented will be sequencing equipment makers Illumina and Thermo Fisher Scientific.