Health officials will announce steps Thursday toward building a massive database of people’s genetic data, the ambitious centerpiece of President Obama’s precision medicine initiative.
The National Institutes of Health has selected Vanderbilt University and Verily, formerly known as Google Life Sciences, to lead the way in researching how best to attract a diverse pool of volunteers for the effort, which officials hope will include one million people within a few years.
Unlike traditional cures, which focus on treatments that work for the average person, precision medicine is a cutting-edge field in which doctors target treatments based on their patients’ specific genetic information. Researchers believe the field especially holds immense promise in combating cancer and other serious diseases such as diabetes.
“Research on this scale promises to lead to new prevention strategies, to improvements in how drugs are prescribed, all on a personalized basis,” said John Holdren, director of the White House Office of Science and Technology Policy.
At a White House summit Thursday morning, officials will emphasize including minority and poor people in the database, communities that are traditionally underrepresented in scientific research, and protecting the personal security of everyone who participates, while still making the data accessible for medical researchers.
“The cohort will represent the rich diversity of America,” NIH Director Francis Collins told reporters Wednesday. “Data sharing will be swift, participants will have access to study information and data about themselves, privacy and security principles will adhere to the highest standards.”
Toward that end, the White House is releasing a draft policy for protecting the security of participants, and the Office of the National Coordinator for Health IT is aiming to develop cybersecurity guidelines specific to precision medicine by December.
NIH also said it’s working with the Health Resources and Services Administration to attract volunteers from among the low-income patients served by community health centers.
The next steps come about a year after Obama announced his precision medicine initiative, which seeks to provide researchers with valuable genomic information as they work on new treatments specifically tailored to a person’s genetic makeup.
Officials said such an ambitious project, collecting genetic and other data from one million volunteers, probably will take three to four years to complete. There are many questions to be answered about how to organize and protect all that information, they acknowledged.
Collins said volunteers can enroll two ways, either through a new website to be set up or by belonging to a healthcare provider that is already partnering with the database. The goal, he said, is to have 50,000 volunteers by the end of this year.
“We want to enable any person in the U.S. to be able to raise their hands and participate,” Collins said.
