U.S. to Collect Genetic Data to Hone Care
Obama on New Medical Funding Initiative
By ROBERT PEARJAN. 30, 2015
By AP on Publish Date January 30, 2015. Photo by Jabin Botsford
WASHINGTON — Saying that “the possibilities are boundless,” President Obama on Friday announced a major biomedical research initiative, including plans to collect genetic data on one million Americans so scientists could develop drugs and treatments tailored to the characteristics of individual patients.
Dr. Francis S. Collins, the director of the National Institutes of Health, said the studies would help doctors decide which treatments would work best for which patients.
White House officials said the “precision medicine initiative” would begin with a down payment of $215 million in the president’s budget request for the fiscal year that starts Oct. 1.
Precision medicine, also known as personalized or individualized medicine, “gives us one of the greatest opportunities for new medical breakthroughs that we have ever seen,” Mr. Obama said at a White House event attended by patients’ advocates, researchers, and drug and biotechnology company executives.
Among those in the audience was Senator Lamar Alexander, Republican of Tennessee and chairman of the Senate health committee, who said he intended to work with the president on the issue.
Mr. Obama said the new initiative could save lives, create jobs, foster new industries and help people overcome “the accidents and circumstances of our birth.”
“If we’re born with a particular disease, or a particular genetic makeup that makes us more vulnerable to something, that’s not our destiny, that’s not our fate,” Mr. Obama said. “We can remake it. That’s who we are as Americans, and that’s the power of scientific discovery.”
Federal officials described the project as a research consortium that would collect information from large numbers of people. The data could include medical records, laboratory test results, profiles of patients’ genes, and information about their diet, tobacco use, lifestyle and environment.
“We have been waiting for this for many, many years,” Dr. José Baselga, the chief medical officer at Memorial Sloan Kettering Cancer Center in New York, said of the project. “We dreamed of this. We can mine the genome of tumors from our patients, identify mutations responsible for the tumors and accelerate improvements in patient care.”
The president’s budget request includes $130 million for the consortium, White House officials said. In addition, they said, Mr. Obama will request $70 million for the National Cancer Institute, the largest unit of the National Institutes of Health, to investigate genes that may contribute to the risk of developing certain types of cancer, and then to use that knowledge to develop more effective treatments.
Mr. Obama also plans to seek $10 million for the Food and Drug Administration, which regulates the technology used to analyze DNA. Such analysis can identify millions of genetic variants, providing information that would help diagnose or treat some diseases, officials said.
The budget request also includes $5 million for health information technology so researchers can safely exchange data.
privacy is built into our efforts from Day 1,” Mr. Obama said. “And I’m proud we have so many patients-rights advocates with us here today. They’re not going to be on the sidelines. This is not going to be an afterthought. They’ll help us design this initiative.
“We’re going to make sure that protecting patient from the ground up, making sure that we harness the new technologies and opportunities in a responsible way.”
Since the 1990s, researchers have been collecting and storing human tissue and other biological specimens in repositories known as biobanks.
Jo Handelsman, the associate director of the White House Office of Science and Technology Policy, said of the president’s plan: “We do not envision this as being a biobank, which would suggest a single repository for all the data or all the samples. 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.”
Dr. Collins said the initiative was feasible because of advances in genetics and cell biology, the use of electronic medical records, significant increases in computing power and a sharp decline over the last 15 years in the cost of a laboratory technique known as DNA sequencing. The technique is used to investigate the functions of genes and to analyze the full set of a person’s genes — the genome.
“It cost us $400 million for that first genome,” Dr. Collins said. “Now a genome can be sequenced for a cost approximating $1,000.”
Nancy A. Brown, the chief executive of the American Heart Association, said that patients with heart disease, like those with cancer, could benefit from precision medicine.
Her organization is compiling a database of genetic information. The data, she said, could help doctors tailor treatments for heart failure or abnormal heart rhythms, or find the right combination of drugs to lower high blood pressure.