A few months ago, I got an email from someone asking whether we might be related. He was contacting me, he said, because we happen to share the same surname, an unusual one outside Germany or the US Midwest. (In Ireland, it’s limited to just my brother and me.)
A few emails into the exchange, he asked whether I had done one of those genetic family-tree tests with the likes of Ancestry.com or 23&Me. I didn’t, but it got me thinking.
Now, I’m a technology journalist in the data protection regulation capital of the world, Dublin.
I write about things like GDPR and the awful things that can happen to your personal data online. It’s fair to say most of my peers are, and let me say this politely, unenthusiastic about logging personal DNA tests with commercial companies on the internet.
Fears range from your genetic health data being bought by insurance companies to targeted bio-weaponisation, as some US members of Congress are currently warning.
But journalism is sometimes about more than theorizing on the potential pitfalls of processes. Sometimes you have to try out the thing that you’re warning about. In this case, there was also the lure of maybe finding out more about my origins, heritage and wider family tree.
It’s more valuable than any browser data or location tracking. This is an actual status report on my body’s needs, abilities and limitations.
So last December, I spit into a little plastic tube and sent it off to 23&Me. About a month later, I got the results.
I was slightly taken back. It wasn’t everything I was looking for. But it did tell me quite a few things I really wasn’t expecting.
In summary, the ancestry bit of it was a dud. I learned little or nothing about who my far-flung ancestors or who my wider family members might be. A few possible third and fourth cousins were identified, a couple of which have emailed me (for the purposes of the exercise, I opted in to be contactable).
But the health section of it was pretty fascinating. I got almost 100 separate reports about 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 detected… cystic fibrosis: variants not detected… Type 2 diabetes: typical likelihood”, and so on.
Even if 23&Me keeps every single promise in not marketing me to the world, we all know that companies holding sensitive personal information get hacked
Of the 59 serious medical problems I could face, diabetes was the only one that showed up as being likely to affect me. That doesn’t mean, at all, that it’s an all-clear on those other conditions – it just means that the specific variants they tested for didn’t throw up any red flags.
The reaction of friends and family to me testing for these conditions was interesting. Many could not understand why I might want to fish for results that might suggest future doom.
But of all the reasons not to do a genetic test online, and there are some good ones, this seems to me to be the weakest. If I have a gene that’s known to overlap with a particular serious medical condition, isn’t it better to know about it and possibly seek pre-treatment or a lifestyle change?
What was arguably as interesting, if not as vital, was the accuracy with which this one spit test could predict a staggering array of seemingly unrelated physical and even psychological predispositions. It correctly identified 35 of 37 ‘traits’ I have.
This was not just physical issues such as back hair, eye color, dimples and “toe length ratio”. It somehow knew that I hate chewing sounds, do not have a fear of public speaking and like vanilla and chocolate ice cream equally. To be clear, many of these predictions came from surveys associated with testees such as myself.
Even still, I was taken back by how much a tiny plastic vial of saliva could detect so accurately my likelihood of suffering motion sickness or early hair loss.
Of the 59 serious medical problems I could face, diabetes was the only one that showed up as being likely to affect me.
Sorry, not just taken back. Nervous, too. Let’s be honest: this stuff is absolute gold to a zillion different commercial and institutional interests. It’s more valuable than any browser data or location tracking. This is an actual status report on my body’s needs, abilities and limitations.
Which leads to the obvious question: do I fear 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 swears blind that it won’t do this, pointing to umpteen protocols and processes it has in place to protect against it. But the fact is that my extracted DNA is now on a database that 23&Me controls. What’s more, this is mainly outside the EU, potentially diluting the rights I might normally rely on with GDPR.
And even if 23&Me keeps every single promise in not marketing me to the world, we all know that companies holding sensitive personal information get hacked all the time.
I may not know much more about my great, great, great grandparents. But testing for variants of serious illnesses on a genetic level doesn’t seem like a completely wasted exercise
That said, in Ireland, insurance companies — as well as employers and other authorities — aren’t allowed to ask for details of any genetic tests and aren’t allowed to use them in assessing things like coverage applicability or annual dues. This is basically down to the Disability Act of 2005.
But this kind of legislative backdrop is only partially reassuring. I know that I now live with the possibility that my DNA data will, in time, somehow leak away to an entity I wouldn’t want to have it. And this isn’t just some email address or login password.
And yet, at the risk of enraging my data privacy friends, I’m not sure I regret doing it. I may not know much more about my great, great, great grandparents. But testing for variants of serious illnesses on a genetic level doesn’t seem like a completely wasted exercise. And if I suddenly start seeing ads for medication to ease one’s rage at other people chewing, I’ll know where it came from.