What happens to your genetic data when you die?

by jeeg 4. March 2015 23:45

 

What happens to our digital selves after we die? Our Airbnb properties might keep hosting strangers. Our Twitter feeds will live on in the Library of Congress as a permanent record of our weirdest musings. And on Facebook, our designated custodians can continue to manage our profiles after we pass, managing the pictures, videos and status updates that serve as our digital epitaphs.

But what about our most personal digital information: our genes? Millions of Americans are sharing, or considering sharing, their genetic information using services like 23andMe and OpenSNP. What happens to that data after we pass? Can our relatives get access to it? Is it locked away? Who has the right to see it, and under what circumstances? After all, our genes, unlike our bodies, live on in our kids, parents, and siblings after we’re gone. Should they also live forever online?

Some scientists, doctors and bioethicists are worried that we haven’t quite figured out if and when to share our genes from beyond the grave. This week, for instance, four Dutch scientists published an opinion piece in the journal Trends in Molecular Medicine on the topic. They’re advocating granting family members access to sequenced DNA only if they explicitly request it. This option, the scientists wrote, would respect the deceased person’s privacy, while also allowing relatives who actually want the information to get it from doctors and genetic counselors. A more active approach would be for doctors to disclose genetic information as a matter of course, but under the approach the Dutch scientists advocate, families could still opt for the genetic “ignorance is bliss” strategy.

If you’ve had your genes examined—or think you might someday—this is what you should know:

Who owns my genetic information after I die?

Scientifically speaking, we share lots of genetic information with our parents and our siblings. For that reason, some have called DNA “shared property,” to which relatives should have a right. But that gets tricky. Which parts of your DNA do you share with your mother, for instance? And, if you die, should she only get ownership of the parts that you share? Divvying up DNA also doesn’t make much sense, given that the value of genetic information comes from analyzing the whole thing, not just snippets.

Then, there are patient privacy laws that protect what doctors can reveal about their patients, even posthumously. Some doctors might therefore keep the information to themselves. But that comes with its own ethical conundrum. Doctors take an oath not to do harm, so would it be harmful not to disclose potentially life-saving information—say, if your late father had a genetic predisposition to lung cancer?

The best course of action, obviously, would be to impart this information while you’re still kicking. “I counsel all patients to share clinically relevant genomic findings with their relatives while they are alive,” Rebecca Pentz, a bioethicist at the Emory School of Medicine who specializes in cancer research, told me in an e-mail.

Is it legal to take my genes to the grave?

If you have a heritable condition, you could spare your relatives some tough situations down the line by sharing your DNA sequences with them. But you could also be sparing your doctor a legal headache. In Safer v. Estate of Pack, a woman sued her dead father’s doctor in New Jersey for not disclosing that he’d died due to a potentially hereditable form of colon cancer. Later, when she was in her mid-thirties, the woman received the same diagnosis. She argued that the doctor had the duty to warn her. The court agreed with her.

“The court employed the concept of a “genetic family”—the idea that genetic information is not just personal medical information but is simultaneously personal and familial—in extending the duty to warn beyond the patient to members of the patient’s immediate family,” wrote Kristin E. Schleiter in the American Medical Association’s Journal of Ethics.

What happens to my 23andMe data after I die?

23andMe users can share data with other members if they want, but if your relatives weren’t privy to your DNA sequence while you were living, getting access to that information isn’t as easy as hitting a button.

23andMe and me tells me that:

Since 23andMe data is confidential and the property of the account holder, we can only release genetic information to an Executor, Personal Representative or Beneficiary of the deceased’s estate. The person requesting the information must fill out an authorization form, and provide evidence and legal documentation indicating they are authorized to act on behalf of the deceased individual.

Right now, 23andMe has no option for users to name a posthumous data manager, the way Facebook now has. “Conceivably you could just give your account information to a relative, but that falls outside of our policy…transfer a profile to another 23andMe member, or to a new account under a new email address,” spokesperson Andy Kill told me. But that would require some pre-death planning.

So if you want your loved ones to be able to scour your genes for information about what their future might hold for them health-wise, the best bet is to share it with them while you’re still drawing breath. Alternately, you could pre-empt the worst by downloading the raw data and uploading it to the web for all to see. Open-sourcing your genome, while uncomfortable in its own ways, might be the closest thing we have to lasting digital immortality.

 

 

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