A few months ago I got an email from someone asking if we could be related. He contacted me, he said, because we happen to have the same last name, an unusual one outside of Germany or the US Midwest. (In Ireland it’s limited to just my brother and me.)
A few emails into the exchange, he asked if I had done one of those genetic family tree tests with Ancestry.com or 23&Me. I didn’t, but it got me thinking.
Now I’m a technology journalist based in the privacy capital of the world, Dublin.
I write about things like GDPR and the terrible things that can happen to your personal information online. It’s fair to say that most of my colleagues, and let me be polite, are not enthusiastic about logging personal DNA tests at commercial companies on the Internet.
Fears range from insurance companies buying your genetic health data to targeted bio-weapons, some US congressmen are currently warning.
But journalism is sometimes about more than theories about the potential pitfalls of trials. Sometimes you have to try what you warn against. In this case there was also the temptation to perhaps learn more about my origins, heritage and wider family tree.
It is more valuable than any browsing data or location tracking. This is a current status report on my body’s needs, capabilities and limitations.
So last December I spat into a little plastic tube and mailed it to 23&Me. About a month later I got the results.
I was slightly surprised. It wasn’t everything I was looking for. But it did tell me some things I really didn’t expect.
In summary, the ancestral piece of it was a dud. I learned little or nothing about who my distant ancestors or my extended family members might be. A few possible third and fourth cousins have been identified, some of whom emailed me (for the purposes of the exercise, I chose to be reachable).
But the health part was pretty fascinating. I have received nearly 100 separate reports of possible genetic predispositions ranging from cancer and diabetes to Parkinson’s and Alzheimer’s. The analysis generally went something like this: “Chronic kidney disease: variants not identified… cystic fibrosis: variants not identified… Type 2 diabetes: typical probability,” and so on.
Even though 23&Me keeps every single promise not to market me to the world, we all know that companies that hold sensitive personal information get hacked
Of the 59 serious medical problems I could face, diabetes was the only one that turned out to be likely for me. That in no way means there’s an all clear signal in those other conditions – it just means that the specific variants they tested for didn’t raise any red flags.
The response from friends and family to me testing these conditions has been interesting. Many could not understand why I would want to fish for results that could portend future doom.
But of all the reasons not to do genetic testing online, and there are some good ones, this one seems to me the weakest. If I have a gene that is known to overlap with a specific serious medical condition, isn’t it better to know about it and possibly seek pre-treatment or lifestyle changes?
What was arguably just as interesting, if not as crucial, was the accuracy with which this one spit test could predict an amazing array of seemingly unrelated physical and even psychological dispositions. It correctly identified 35 out of 37 “traits” I have.
It wasn’t just about physical issues like back hair, eye color, dimples and “toe length ratio”. It kind of knew I hated chewing noises, wasn’t afraid of public speaking, and liked vanilla and chocolate ice cream equally. To be clear, many of these predictions come from surveys conducted on test subjects like me.
Still, I was amazed at how accurately a tiny plastic vial of saliva could pinpoint my likelihood of suffering from motion sickness or early hair loss.
Of the 59 serious medical problems I could face, diabetes was the only one that turned out to be likely for me.
Sorry, not just surprised. Also nervous. Let’s face it: this stuff is absolute gold for a million different commercial and institutional interests. It is more valuable than any browsing data or location tracking. This is a current status report on my body’s needs, capabilities and limitations.
Which leads to the obvious question: am I concerned that any of the genetic data extracted by 23&Me will now be traded or transferred online to other companies or organizations?
The honest answer is yes. 23&Me blindly swears it won’t, pointing to dozens of protocols and processes it has in place to protect against it. But the fact of the matter is that my extracted DNA is now in a database controlled by 23&Me. Additionally, this is mostly taking place outside of the EU, potentially diluting the rights I could normally rely on with the GDPR.
And even if 23&Me keeps every single promise not to market me to the world, we all know that companies that hold sensitive personal information are constantly being hacked.
I may not know much more about my great, great, great grandparents. But testing for variants of major diseases at the genetic level doesn’t appear to be an entirely wasted exercise
In Ireland, however, insurance companies – as well as employers and other authorities – are not allowed to request details of genetic tests or use them to assess things like the applicability of cover or annual fees. This is mainly due to the Disability Act of 2005.
But that kind of legislative backdrop is only partially reassuring. I know I’m now living with the possibility that over time my DNA data will somehow leak to an entity I don’t want. And that’s not just an email address or login password.
And yet, at the risk of angering my privacy friends, I’m not sure I regret it. I may not know much more about my great, great, great grandparents. But testing for variants of major diseases at the genetic level doesn’t appear to be an entirely wasted exercise. And when I suddenly see ads for drugs to relieve anger at other people while chewing, I know where that’s coming from.
https://www.independent.ie/business/technology/a-dna-spit-test-may-mean-the-sale-of-my-soul-to-the-highest-bidder-but-it-could-also-save-my-life-41893055.html A DNA spit test may mean selling my soul to the highest bidder, but it could also save my life