As gene sequencing becomes more common, hospitals and pharmaceutical companies have struck deals to collect and mine genetic information for drug development, but these agreements often do not provide patients with detailed information about how their genetic data are used.
Under these agreements, hospital patients consent to have their medical records and biological samples shared for research purposes. Hospitals then blind the data and send them to pharmaceutical manufacturers for sequencing; the pharmaceutical researchers then review the data and accompanying medical records to determine links between genetic traits and disease.
According to a report in The Wall Street Journal, pharmaceutical companies are spending hundreds of millions of dollars to acquire patients’ genetic codes from hospital systems and subsequently sequence them. Several large hospital systems have formed these agreements, such as Geisinger in Pennsylvania, Mount Sinai Health System in New York, and the Mayo Clinic in Minnesota.
However, hospitals do not disclose the details of these agreements to patients. They may notify patients that companies fund and assist with studies of genetic data from donated biological samples, but do not disclose that they are working exclusively with a pharmaceutical company and are prohibited from sharing data with a rival company.
Still, representatives from the hospital systems have said that patient focus groups did not express concern with these agreements. Also, despite the potential issues associated with data governance, some industry and health-care executives insist that genetic research would not be possible without pharmaceutical investment.