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Know How It's Used

Patients who agree to take part in genetic research might not be aware of how their data is being used, the Wall Street Journal reports. It adds that a number of hospital systems have entered into exclusive agreements to provide drugmakers access to patient data that patients might not know about.

For instance, the Journal writes that while the Geisinger health system tells patients that their studies might be funded by companies and that companies might take part in the work, it doesn't say that it has an exclusive arrangement with Regeneron Pharmaceuticals. Geisinger's David Ledbetter tells the Journal that focus groups they conducted found patients weren't concerned.

Some hospital researchers tell it that without the corporate investment, they wouldn't be able to conduct research or would have to rely on public funding. "We would have no data," Keith Stewart, director of Mayo Clinic's Center for Individualized Medicine, tells the Journal. "We don't have that kind of money sitting around." 

Arizona State University's Robert Cook-Deegan argues that patients should be made aware of the arrangements. "Donating to a nonprofit hospital that you trust and is in your community and that you think is a good thing is not the same thing as donating to a for-profit company," he tells the Journal.