Many researchers and the universities and medical centers that back them regard genetic material and the results from tests they conduct on it as their intellectual property and are reluctant to share it
WASHINGTON — President Obama on Thursday waded into the complex and high-stakes debate over whether patients own their genetic information, saying he believes his tissues and any discoveries that stem from his DNA belong to him.
“I would like to think that if somebody does a test on me or my genes, that that’s mine, but that’s not always how we define these issues,” Obama said during a White House forum on a major biomedical research initiative he began last year.
The president said the success of his Precision Medicine Initiative, which aims to collect genetic data on 1 million American volunteers so scientists can develop drugs and treatments tailored to individual patients, hinged at least in part on “understanding who owns the data.”
Many researchers and the universities and medical centers that back them regard genetic material and the results from tests they conduct on it as their intellectual property and are reluctant to share it. But consumer groups and some health-advocacy organizations believe that individuals are the rightful owners of the data and the discoveries that emanate from them.
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Advances in genetics and cell biology and the use of electronic medical records have paved the way for more sophisticated research into genes that may increase the risk of developing certain diseases. The debate over such research has broad implications for privacy and the success of precision-medicine efforts, which depend on access to troves of genetic data.
Obama’s comments Thursday seemed to place him in the camp of individual patients.
“Right now, what happens is the best researchers and the best universities, oftentimes they’re kind of hoarding their samples,” Obama said, essentially for fear of losing their grants if they do not keep control of them.
The president’s remarks elated some health advocates who have long argued that participants in genetic testing should be partners in the research that their cells enable.
“I had chills and a few tears, because I had not heard this before from the president or anyone high-up at the White House,” said Sharon Terry, chief executive of the Genetic Alliance, who was in the auditorium, across from the White House, as Obama spoke.
“The Precision Medicine Initiative has been trying to shift the conversation toward the idea that participants should be partners,” Terry said. “But this is a really, really hard issue.”
The Obama administration has been working to address it. On Thursday, the Department of Health and Human Services issued new guidance to clarify that patients should have access to their medical records, including genomic testing results.
Dr. Francis Collins, director of the National Institutes of Health (NIH), has said participants in the Precision Medicine Initiative should be treated as “partners in research, not subjects.” The program’s principles include finding “innovative, responsible and consumer-friendly ways of sharing research data with participants.”
The NIH said Thursday that Vanderbilt University would team with Verily, formerly known as Google Life Sciences, to begin building the group of 1 million American volunteers who will participate in the individualized medicine effort.
Obama signed legislation in December providing about $200 million for the program.