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President Obama has waded into the complex and high-stakes debate over whether patients own their genetic information, saying that he believes that 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,” Mr. Obama said during a White House forum on a major biomedical research initiative he began last year.
The president said that the success of his Precision Medicine Initiative, which aims to collect genetic data on one 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.
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.
Read full, original post: President Weighs In on Data From Genes
