- On Thursday, Obama administration officials outlined the latest progress on the Precision Medicine Initiative, including a draft policy on data security principles.
- The National Institute of Standards and Technology and the Office of the National Coordinator for Health IT expect to have a cybersecurity guide for precision medicine by the year's end, Morning Consult reported.
- President Obama has targeted $215 million for the initiative in fiscal 2016, $130 million of it to the National Institutes of Health to build a patient cohort of at least 1 million people to support precision medicine research.
Thursday’s announcements included an NIH award to Vanderbilt University, teaming with Verily, to start the first phase of the cohort. The NIH will also work with the Health Resources and Services Administration to develop partnerships with health centers that provide care to underserved communities, to ensure diversity in the cohort.
To improve people’s ability to access their individual data, NIH and ONC plan a series of pilot projects with EHR companies Allscripts, athenahealth, Cerner, drchrono, Epic, and McKesson.
Other actions include the FDA’s precisionFDA challenge to get scientists to develop quality standards for genomic profiling, and plans for additional guidance on people’s right to access their information from HHS’ Office for Civil Rights.
In conjunction with the White House event, more than 40 private-sector organizations announced major initiatives in precision medicine. Among them were Virginia-based Inova Health System, which launched a $100 million venture fund for precision medicine, and Maryland health information exchange, CRISP, which will offer people consent options on when their data can be donated for research use.
Still, precision medicine is still very much in its infancy. With 30,000 or 50,000 important genes, “genetics is just a blueprint,” Tim Anderson, vice president of Booz Allen’s health team and a member of the precision medicine team, told Healthcare Dive for a recent feature on precision medicine. “There are perhaps tens if not hundreds of thousands of proteins that are generated by those genes and make us run, and so there’s that whole next level of proteomics and epigenetics.”