Lawyer's warning about family-tree DNA tests

Lowndes Jordan partner Rick Shera asy DNA testing services' data-sharing policies are too vague.

Think twice before you order one of those DNA sample kits that help you map out your family tree, Lowndes Jordan partner Rick Shera says.

The likes of Utah-based Ancestry.com and Silicon Valley's 23andMe let people order a kit online for as little as $80. They take a swab of their saliva, then send it in for analysis. 

They get a report that helps them trace their roots, and which areas of the planet their forebears probably lived.

But the trouble is that it doesn't end there.

It's just been revealed that Ancestry.com has a partnership with Calico, a fully-owned subsidiary of Alphabet (aka the holding company that is best known for its core asset, Google).

There is no hint that Calico has used Ancestry.com's data for anything but pure scientific and medical research.

However, Calico's revelation has highlighted a broader problem: Ancestry, and its competitors, have only vague policies on partnerships.

That means while today they are sharing DNA data for good, tomorrow (or sometime in the next couple of decades) they could sell it to a marketing company, or a health insurance outfit that wants the inside word on someone's health. That's why DNA test result data have been described as "the gift that keeps on giving."

Vague on sharing, robust on privacy
Mr Shera has looked at Ancestry's data-sharing policies and says they are too vague. It's not clear who will get individuals' data, and what exactly they will do with it.

He does, however, give the company dibs for having what he describes a "robust" privacy policy (and the flurry of updates for the GDPR probably helped there).

That means things aren't quite as bad as they seem. The initial round of headlines over Ancestry and Calico implied there was open-slather testing. In fact, Ancestry will only share data if people actively give their consent. So they shouldn't consent if they have any concerns. They could even go a step further and request their DNA data be deleted from Ancestry's systems once they have got your report, he says.

Not good enough
Those protections are not enough to satisfy Mr Shera, on a personal as well as a professional level.

He says he was tempted to buy a "where do I come from kit" ahead of a recent family reunion. In the end, he decided it wasn't worth it.

The intellectual property specialist notes that "Once that information is out there, I lose control of it. It's not like a credit card you can change. Once privacy is gone in respect to your DNA, it's lost forever."

And he adds that as artificial intelligence advances, companies like Ancestry are going to be doing more DNA analysis and sharing.

Another consideration is security. No DNA analysis service can guarantee it will never be hacked. And then there's common-or-garden human error, such as an employee emailing data to an outsider by mistake. "These things do happen. In fact, you could almost say it's inevitable they'll happen," he says.

His advice: If people are going to share their DNA data, make sure they do it for a good reason, such as to assist with a medical treatment.

Consider whether it's worth handing over their most intimate data for the likes of a family tree report, which Mr Shera describes as a "gimmick."

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A great example of this is the recent arrest of the alleged Golden State Killer/East Area Rapist/Original Nightstalker - he was active in the mid 70s-80s. A family member was identified using familial DNA from one of the genealogy sites - not him directly. They then used that to identify a number of suspects, including the person arrested, they then built enough evidence including collecting a disposed of item to match DNA against.

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Agree. Sharing with law enforcement is another interesting issue. Arguably it's defensible, with a warrant, but it's something else people have to be aware of. No-one wants a serial killer on the use, but it's a different kettle of fish if, say, DNA is subpoenaed in a paternity dispute or any civil matter.

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Most governments already hold everyone's DNA from newborn blood samples for phenylketonuria tests and they've been around for 50 years.

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Who’s DNA is used for genetic engineering. How do we know it’s not ours or our children’s from blood tests.

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Who cares, even if it was. There's an argument that anyone's genetic code is actually the common property of humanity (as we're all basically just composed of reshuffled jigsaw pieces of the same genetic material).

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