Who owns your medical data?

Privacy and ethics laws can’t possibly keep up with the pace of medical technology.

The latest evidence of this is a Wall St. Journal story last week that reported on the medical implant devices being installed in people. They’re beaming back information to, in this case, Fridley-based Medtronic, which can only give it to a patient’s doctor and a patient’s hospital, not the patient.

At the same time, though, Medtronic is planning to make money off the data by, perhaps, selling it to insurance companies.

If patients get a look at their own data, doctors are worried they won’t know what it means, or worse, they’ll overreact to what they think it means.

That theme is becoming clear, too, in a fascinating , infrequent series on NPR about genome sequencing. The latest installment focuses on the debate over whole genome sequencing on babies. If it reveals a particular medical future, what right does the child have to that data — or to not have that data?


“In theory it sounds absolutely fantastic,” says sociologist Stefan Timmermans, who studies newborn screening at UCLA. “The reality is that there’s a lot of uncertainty about each of the data points you receive. So if people start making health decisions or life-or-death decisions based on information that is so tenuous at this point, I think this could indeed be a nightmare scenario.”

A nightmare, because parents could easily become overwhelmed with confusing or ambiguous information about the health of their baby during one of the most sensitive times in their lives.

There’s plenty of evidence that parents already often overreact to the relatively small amount of data that they’re getting from little spots of blood collected at birth. Bioethicist Mark Rothstein of the University of Louisville says the tests can lead to so-called vulnerable child syndrome.

These children “are viewed as medically vulnerable and medically frail,” Rothstein says. “And so while all the other kids are riding bikes and climbing trees, these kids are sort of sitting in a corner. So they can’t even enjoy a normal childhood.”

Long-term, it seems, there are also questions of whether insurance companies should ever get ahold of your DNA sequencing to help determine if you’re a risky bet.

  • Joanna

    *moving the film Gattaca to the #1 spot in my Netflix DVD queue*