If you go to the hospital for medical treatment and scientists there decide to use your medical information to create a commercial product, are you owed anything as part of the bargain?
That's one of the questions that is emerging as researchers and product developers eagerly delve into digital data such as CT scans and electronic medical records, making artificial-intelligence products that are helping doctors to manage information and even to help them diagnose disease.
This issue cropped up in 2016, when Google DeepMind decided to test an app that measures kidney health by gathering 1.6 million records from patients at the Royal Free Hospital in London. The British authorities found this broke patient privacy laws in the United Kingdom and put a stop to it.
But the rules are different in the United States. The most notable cases have involved living tissue, but the legal arguments apply to medical data as well. One of the best examples dates back to 1976, when John Moore went to UCLA to be treated for hairy cell leukemia.
Prof. Leslie Wolf, director of the Center for Health, Law and Society at the Georgia State University College of Law, says Moore's doctors gave him good medical care, "but they also discovered there was something interesting about his cells and created a cell line from his cells without his knowledge," she says.
"And what complicated things even more is they asked Mr. Moore to travel down from his home in Seattle to L.A. multiple times, for seven years, to get additional cells without telling him they had this commercial interest in his cells."
Moore sued. In 1990, The California Supreme Court decided that he did not own his cells, but found his doctors had an obligation to inform him that his tissue was being used for commercial purposes and to give him a chance to object. Moore reached a settlement following his court battle, "but Mr. Moore certainly felt betrayed through the process," Wolf says.
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https://www.npr.org/sections/health-shots/2018/05/31/615501659/when-scientists-develop-products-from-personal-medical-data-who-gets-to-profit?
