CHICAGO — Vice President Biden on Monday announced the launch of a first-of-its kind, open-access cancer database to allow researchers to better understand the disease and develop more effective treatments.
The Genomic Data Commons, a part of the National Cancer Institute, contains the raw genomic and clinical data for 12,000 patients, with more records to come as researchers contribute to it, he said. Besides detailed analyses of the molecular makeup of cancers, the database has information on which treatments were used and how patients responded.
Biden announced the GDC start in remarks to thousands of researchers, physicians and patient advocates at the American Society of Clinical Oncology’s annual meeting. Earlier in the day, he’d visited the University of Chicago, which is housing the database and will manage it for NCI.
Biden told the cancer doctors that the database will encourage needed collaboration among scientists in different disciplines to ferret out important aspects of cancer and find new ways to help patients.
The way research currently is conducted hinges on “the cult of the individual,” Biden said, and fails to adequately reward what he labeled team science.
The vice president also called for an overhaul in how the nation does clinical trials, so that doctors can more easily find eligible patients to take part and patients can find the trials right for them.
“There has got to be a better way,” he said, urging the oncologists to work to improve the system.
As head of the Obama administration’s “cancer moonshot,” Biden has repeatedly stressed the importance of broad sharing of scientific data to accelerate work on therapies and even cures. He has warned that research “silos” will only slow progress.
“Increasing the pool of researchers who can access data and decreasing the time it takes for them to review and find new patterns in that data is critical to speeding up development of lifesaving treatments for patients,” he said Monday.
Officials hope the Genomic Data Commons will prove pivotal to advancing “precision medicine,” in which physicians attempt to tailor therapies to the specific characteristics of a person’s cancer. That has been a hot topic at the oncologists’ meeting and a priority for the administration for the several years.
“What I see as transformative is, this is where the world is going, and GDC is just a part of it,” said Doug Lowy, acting director of the cancer institute said in an interview. He said Biden’s exhortations about data-sharing have driven home the point to researchers.
In the past several years, vast troves of genomic cancer data have been generated as a result of rapid DNA-sequencing technology. But Louis Staudt, one of the NCI researchers leading the database effort, said in a recent interview that the information is scattered among different government and academic repositories and is sometimes out of scientists’ reach.
“So one of the initial goals is to bring all the data into one place, analyze it and display it in a uniform way,” he said. The aim of GDC is for researchers to “have information at their fingertips” about relationships between abnormalities or mutations in genes and clinical outcomes, he said.
The database, which will be accessible through an NCI portal, will be interactive and searchable. Scientists will be able to re-analyze the raw data according to their interests. Those most likely to use the GDC are researchers or researchers/clinicians, as opposed to community oncologists, Lowy said.
Initially, the data is coming from big existing NCI programs, such as the Cancer Genome Atlas, which has generated maps of important genomic changes in 33 types of cancer, and Therapeutically Applicable Research to Generate Effective Treatments, which focuses on pediatric cancer. Information from clinical trials funded by NCI will have to be submitted to the database, Lowy said.
He said the GDC will include safeguards for patient privacy. The leaders of the nation’s major cancer centers are working on a model consent form.
While the initiative is being touted as part of the administration’s moonshot effort, its roots go back years. The Institute of Medicine, in a 2011 report entitled “Toward Precision Medicine,” called for a “knowledge network of disease” that would mine genomic information for clues to patterns and treatments. It recommended the creation of a data repository for biological information along with the medical histories and health outcomes of patients.
The NCI effort, which has been in the planning stages for a couple of years, is “the result of a very complex undertaking that has involved years of trial, and sometimes error, to reach fruition,” according to a blog post by Lowy and Warren Kibbe, director of the NCI Center for Biomedical Informatics and Information Technology. The post is scheduled to be published Monday on the website Medium.