Who Gets To Profit From Patients' Medical Data? : Shots - Health News Data from patient medical records are being used to develop commercial products. What rights do we have over the use of our personal health information?

When Scientists Develop Products From Personal Medical Data, Who Gets To Profit?

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Yesterday on this program we heard about researchers who were training an artificial intelligence program to recognize deadly pancreatic cancer. Among the questions this research raises is whether patients are owed anything if their medical information is used to develop a profit-making product. NPR's Richard Harris reports.

RICHARD HARRIS, BYLINE: A bit of history is informative here. In 1976, John Moore went to UCLA to be treated for leukemia. Leslie Wolf at the Georgia State College of Law says Moore's doctors gave him good medical care.

LESLIE WOLF: But they also discovered there was something interesting about his cells and created a cell line from his cells without his knowledge. And what sort of complicated it even more is they asked Mr. Moore to travel down from his home in Seattle to LA multiple times for seven years to get additional cells without telling him they had this commercial interest in his cells.

HARRIS: Moore sued and eventually reached a settlement with UCLA.

WOLF: But Mr. Moore certainly felt betrayed through the process.

HARRIS: Some of the same issues are surfacing again as university researchers realize that they are sitting on a valuable trove of digital medical records such as CT scans and are starting to use these records to develop commercial products.

NABILE SAFDAR: In a certain sense, whether it's cells or bits and bytes, it's all information about an individual at some level.

HARRIS: Dr. Nabile Safdar, a radiology professor at Emory University, met me at a recent medical meeting to talk about these issues. He says that if that information ends up being used to develop a commercial product that's worth millions, are patients entitled to a cut?

SAFDAR: That's a question that I think we really need to, you know, figure out. You know, and if I were a patient and my data was used to develop something which was being shared outside as a product, I'd want to know.

HARRIS: That's usually not how it's done. At many research hospitals, patients routinely sign a paper in that huge stack of admission paperwork giving permission for the institution to use their personal data for research.

SAFDAR: For someone to sign away the rights in perpetuity for their data to be used for all possible research applications in the future - that's something that I think would deserve a lot of scrutiny. And that's not something that I would agree with.

HARRIS: But that's exactly what happens at Johns Hopkins hospitals. And it's approved by the university's ethics committees, says Dr. Karen Horton, head of radiology. One major protection is that the data they are using, for example, to develop artificial intelligence tools is stripped of all personal information.

KAREN HORTON: So there's no risk to a patient to have their images used to train the computer.

HARRIS: And Horton says technically patients don't own the data the doctors have gathered.

HORTON: Well, I think right now, as the law defines it, your medical images are property of the health system. You don't own the image.

HARRIS: I asked Leslie Wolf at Georgia State if she agreed.

Is that a strong argument?

WOLF: I'm not sure. Yes, they created the scans, but certainly the patient has rights related to the scans.

HARRIS: But it takes thousands of scans to develop a commercial product, so no single person's data is especially valuable on its own. Overall, she says, patients probably don't have much of a legal argument here.

WOLF: My own concern is not that it is problematic per se. I don't think we've done a really good job of letting people know that this is in fact what we do with their data.

HARRIS: If people knew, she says, they'd likely want it to benefit other people, even if that means that it also enriches the universities and the companies they cooperate with. Richard Harris, NPR News.


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