The White House unveiled a "Precision Medicine Initiative" today — a $215 million investment that will go toward building a database containing genetic information and medical records belonging to millions of Americans, reports Science. The investment, one that’s part of President Obama’s 2016 budget proposal, will also go toward pioneering new models for patient-specific medical research — research that caters to a specific patient’s needs based on their genetics instead of relying on a one-size-fits-all treatment approach.
"Most medical treatments have been designed for the ‘average patient,’" according to a White House statement. As a result, treatments can be very successful for some patients, but not for others. And that’s exactly what the White House’s plan aims to change. "The Precision Medicine Initiative will leverage advances in genomics, emerging methods for managing and analyzing large data sets while protecting privacy, and health information technology to accelerate biomedical discoveries."
"health information technology to accelerate biomedical discoveries."
The White House’s investment is split in four parts. The biggest chunk of the money, about $130 million, will go to the NIH to recruit a "million or more volunteers" whose genetic information will be stored in a series of databases. About $70 million will go to the National Cancer Institute, a subsection of the NIH, so it can increase its efforts to identify genetic mutations that contribute to a person's cancer risk. The FDA, for its part, will receive $10 million to improve its databases, as well as the technologies used to analyze DNA. Finally, the Office of the National Coordinator for Health Information Technology will receive $5 million that will be used to address privacy issues and ensure that data exchanges between research centers are secure.
Some of the genetic data that will be included in this initiate has already been gathered, according to Jo Handelsman, associate director of the White House Office of Science and Technology Policy. He told The New York Times that "there are existing cohorts around the country that have already been started and have rich sources of data. The challenge in this initiative is to link them together and fill in the gaps." New volunteers will also be recruited, he said, and their "privacy will be rigorously protected."
"privacy will be rigorously protected."
Despite these safeguards, recruiting participants might be a challenge. A recent survey conducted by researchers at Brigham and Women’s Hospital showed that Americans worry that insurance companies and employers may discriminate against them based on their family histories or genetic test results. The Genetic Information Nondiscrimination Act was signed into law in 2008 to prevent genetic discrimination from happening, but these protections only cover instances of discrimination by an employer or a health insurance company. Companies that sell life insurance, long-term care insurance, and disability insurance can still ask for genetic tests results if they wish — and they can base their rates on this information.
$215 million is a very large amount to spend on an initiative of this kind, says Michael Eisen, a geneticist at the University of California, Berkeley. "I worry that this $200 million will ultimately come from basic research funding, and will thus be another step in the decade long shift from basic to applied research," he says. If that's the case, then precision medicine "will be useless," as basic medicine is where all the ideas for how to use that information is produced. Eisen also told The Verge that the money will be "flushed down the toilet" if the databases developed through this initiate are poorly constructed. "I am very leery of big, centrally organized science endeavors, as they do not have a good recent track record." Still, the initiative has a lot of potential, he says, and having a large group of people to study will be valuable.
"The potential for precision medicine to improve care and speed the development of new treatments has only just begun to be tapped," according to the White House’s statement. This may be true, but until Americans feel safe under the law, recruiting "a million or more volunteers" might prove difficult.