WASHINGTON – The Mayo Clinic’s cutting-edge pooling of patients’ genetic and medical data could soon become the model for an ambitious national databank envisioned by the Obama administration.
President Obama announced plans for the databank Friday as part of the $215 million “precision medicine initiative” that he will ask Congress to fund in the 2016 budget. The initiative includes gathering details from a million volunteers nationwide to help tailor genetic diagnoses and treatments of diseases.
“If we have a big data set, a big pool of people that’s varied, then that allows us to really map out not only the genome of one person, but now we can start seeing connections and patterns and correlations that helps us refine exactly what it is that we’re trying to do with respect to treatment,” the president said at a White House ceremony, attended by Mayo Vice President Dr. Gianrico Farrugia.
Farrugia was invited to the White House because Mayo set up a successful “biobank” system at its Center for Individualized Medicine in 2009. The data repository reached its goal of assembling the genetic and medical details of 50,000 individuals for purposes of comparison “with the idea that the knowledge would be distributed as widely as possible,” said Farrugia.
“It’s transformational,” he said. “Anyone who uses the information [in the Mayo biobank] and generates new information [by doing so] is obligated to put that new information in the bank.”
Farrugia said Mayo will await details of the new federal program and present them to a Mayo community advisory board and scientists in deciding whether to contribute to the national databank. But the aims of the administration appear to merge nicely with what Mayo has been doing for five years.
“If we combine all these emerging technologies, if we focus them and make sure that the connections are made, then the possibility of discovering new cures, the possibility of applying medicines more efficiently and more effectively” can improve individual health care, Obama said.
The White House had no direct conversations with Mayo as it prepared the precision medicine initiative, Farrugia said. However, the Rochester-based medical center did talk to several federal agencies.
Mayo has pioneered computerized analysis of shared data as a path to individual treatment. It recently entered into an agreement with health insurance giant UnitedHealth Group to create what is reportedly the largest health care database.
Now, Farrugia said, Mayo is “committed” to the president’s initiative, which also includes specific efforts to find gene-based cures for cancer.
In theory, a growing pool of diagnostic and treatment insights will multiply as more researchers and clinicians discover and apply them. Comparative analysis of the data using computers then brings trends and possible treatments to light.
Keeping individuals’ names secret while exposing their genomes remains a concern. The government says it will solicit ideas from “patient groups, bioethicists, privacy and civil-liberties advocates, technologists and other experts” about protecting the identities of volunteers.
Farrugia said safeguards to anonymity are important, but doable. To find 50,000 participants for its biobank, Mayo solicited volunteers from its campuses in Minnesota, Florida and Arizona. It also struck deals with Arizona State University and Phoenix’s Mountain Park Health Center to find volunteers.
Participants sign a consent form, fill out a questionnaire, provide blood samples and give access to medical records. Information is stored with a unique code that does not include name, address or Social Security number. Participants can have their information withdrawn from the biobank if they no longer want it stored. They can also choose to be notified about certain findings about their genes.
Farrugia himself is a donor to the Mayo biobank.
“I felt this was the right thing to do,” he said.