Deals between drugmakers and hospital systems to mine the genetic profiles of hospital patients are triggering concerns over the control of valuable genetic data.
Drugmakers have been spending hundreds of millions of dollars for access to patient information because of the data’s potential to help unlock disease insights and discover new drugs. They are striking deals to sequence patients’ genetic code, including with hospital systems like Geisinger in Pennsylvania, Mount Sinai Health System in New York and Mayo Clinic in Minnesota.
For patients, the allure is the promise of free genetic testing that could indicate their risk of diseases and the opportunity to contribute to the advancement of science. Yet patients may not realize how else their genetic data is getting used and the ways hospital systems and drugmakers could profit from it, legal experts and patient advocates say.
Agreements generally bar hospitals from sharing data with other companies, or the drug companies from sharing data with hospitals’ rivals, according to interviews with drug-company and hospital officials involved in the deals.
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