A Silicon Valley startup, 23andMe, has turned a largely academic debate on the privacy of biological data into a public row.
The company, which markets a $99 test to reveal a customer’s genomic makeup, is sparring with the U.S. Food and Drug Administration and fighting a class action lawsuit in California. The FDA says its claims aren’t supported by science. The lawsuit alleges false advertising, and one of the plaintiffs’ lawyers is making another charge: “It seems to me to be a very thinly disguised way of getting people to pay them to build a DNA database,” Mark Ankcorn told The Associated Press.
While leaker Edward Snowden’s revelations about the electronic communications of ordinary citizens becoming database fodder for the National Security Agency have grabbed the public’s attention, “big data” is also emerging as a force in medicine. And you and your chromosomes — all 23 pairs of them — could become a part of it, if you aren’t already.
The notion of a genetic testing company selling one’s DNA code the way an online retailer sells email addresses feels decidedly creepy. But what if your doctor asks you to share your genetic information to advance the cause of treatments and cures?
I would say “yes” in a heartbeat. The bigger the data pool, the better the chances of benefiting from it one day. But I would also expect some protections.
Medicine is becoming personalized. The human genome can be sequenced quickly and at a cost not much more than the standard MRI. But the information it holds needs a basis for comparison. With a data base, doctors can look at how patients with similar genetic makeups have responded to certain treatments. They can consider age, diet, health habits and environment in crafting a treatment plan.
“We need to organize our health care system so that we’re learning from every patient,” saidRichard Payne, a Duke University professor and the John B. Francis Chair in Bioethics at the Center for Practical Bioethics
in Kansas City. “I think the patient has an obligation to participate.”
He’s right about that. Expecting to shield your own DNA while making use of other people’s information seems like freeloading. But sharing has risks, and patients should expect the health care system to protect their privacy.
People worry, understandably, about hackers accessing their medical information. What if a potential employer learns someone has a high risk of an expensive disease, like diabetes? In a scenario worthy of CSI, what if someone plants fabricated DNA at a crime scene?
But technology should be able to minimize those risks. And our medical information has never been especially private. Insurers see it. The pharmacist gives something away every time he or she announces a prescription with other people standing at the counter.
“We have to have systems in place to prevent abuse,” Payne said. “And there has to be a sense that it will be put to good purposes.”
That’s already happening. Doctors are using personalized genetic information combined with data to avoid overuse of cancer treatments. Hospitals have used databases to reduce readmissions.Stephen Kingsmore
at Children’s Mercy Hospital uses rapid genomic sequencing to identify serious genetic illnesses within 50 hours of identifying a problem. Expanded data fields will enable him to identify treatments more specifically and quickly.
There is a vast gulf between the quickie commercialized service offered by 23andMe and the groundbreaking medicine practice by Kingsmore. The challenge will be to weed out bad actors while allowing good work to thrive. The health care field is just beginning to grapple with the implications, and few of us will be able to escape the debate.