ProPublica, November 21, 2018
Derek Kravitz and Marshall Allen

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Medical devices are gathering more and more data from their users, whether it’s their heart rates, sleep patterns or the number of steps taken in a day. Insurers and medical device makers say such data can be used to vastly improve health care.

But the data that’s generated can also be used in ways that patients don’t necessarily expect. It can be packaged and sold for advertising. It can anonymized and used by customer support and information technology companies. Or it can be shared with health insurers, who may use it to deny reimbursement. Privacy experts warn that data gathered by insurers could also be used to rate individuals’ health care costs and potentially raise their premiums.

Patients typically have to give consent for their data to be used — so-called “donated data.” But some patients said they weren’t aware that their information was being gathered and shared. And once the data is shared, it can be used in a number of ways. [...]

bioethics biotechnology human subjects research insurance privacy regulation