Drugmakers, wanting to develop new products informed by disease insights, are snapping up genetic profiles of hospital patients and spending hundreds of millions of dollars to get the data. But the practice is throwing into question who should control this “valuable genetic data,” The Wall Street Journal reported.
Major hospital systems, including the top-ranked Mayo Clinic, Geisinger and Mount Sinai Health System, are all involved in deals with drugmakers to sell patient genetic information, according to the WSJ. Patients, for their part, are given free genetic testing under the allure that the results could indicate disease risks as well as contribute toward advancing science. But patients aren’t totally aware of how their genetic information is being used, and the data is typically contained to a single company under these private deals, rather than shared for public initiatives, meaning the data might not actually be used for research.
According to the companies, the insights are shared from the closely held data when the findings are published. And other deals may allow sharing with nonprofits or publicly-funded research. For hospitals, working with drug companies can seem necessary, as relying on public funding for genetic sequencing likely wouldn’t reach a greater scale.
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