DNA Testing Kits & Consent

For Christmas in 2020 I was given an Ancestry DNA kit from my mother. It was a very thoughtful gift from a parent who has always given me very thoughtful gifts my entire life. However, almost all of my mother’s digital life – from her home automation, to the last 3 laptops she’s owned, to her on-site NAS, to most things she owns that have a plug & screen are things I’ve given to her. I’m her tech-wizz son so it’s pretty suiting and I enjoy it. Unsurprisingly she’s not exactly “up-and-up” on technology – however she’s pretty damn keen on a lot of other things. She’s a smart cookie – just not with tech.

It’s for that reason I thanked her for the really thoughtful gift but explained that I wouldn’t be willing to use it for privacy reasons. She seemed perplexed as there’s a lot of mystery surrounding my father’s side of the family (no, he didn’t run off in the middle of the night to get a pack of smokes and never return). There’s basically nothing known about anyone prior to my grandfather, and there’s also another much more relevant question that pertains to me a lot closer which I’ll (very likely) never know the answer to. She was giving me the gift of curing curiosity. Am I curious – absolutely! But, I’m not willing to pay the price of admission.

In An Age Where Nothing Is Private, Your DNA Is Your Last Hope

Where we’re at today is basically every electronic item in your home is recording at least something about you. Your phone and nearly every app loaded onto it is recording as much as you’ll allow it to. Your personal information, your habits, camera images, anything the microphone picks up, what you spend your money on – and how much of it, and so-on-and-so-forth. What devices can’t do is get ahold of your DNA – that is, unless they make it cheap & easy for you to just give it to them.

Kind of like how Amazon puts out their Alexa/Echo smart speakers for dirt cheap. It wants your info, because that’s more profitable for them. So, they’ll take a big cut in profits from the sale of the speaker to get your other info. That’s exactly what Ancestry, 23andMe, and a few others do. Your kit is $99 and then they have you locked. But, nobody is forcing you besides your curiosity – and that’s what gets a lot of people.

DNA collection isn’t exactly as simple as they make it seem in the movies. People aren’t coming to your home and scraping skin flakes from your nail clippers, or hair from your brush. You need to be willing to give over your DNA for these tests. But why would you want to give anyone your DNA? Again, curiosity. You’re mystified by the possible information out there, leaving you blinded to what any reasonable human being would consider a massive invasion of their privacy.

When I travel internationally I’ve (thankfully) never been forced to give a fingerprint, iris scan, or other biometrics. Many people are forced however – and it usually seems they’re certainly not North American in appearance. No shock there. Although I always wondered how comfortable I’d be if they did force me to give my biometrics to them. I can’t exactly say no, else I’m likely banned and sent directly home – if not jailed – depending on how nasty they feel that day. But I can tell you one thing – I’d never just walk up and volunteer my fingerprint, iris scan, or otherwise. Just in the same way that I wouldn’t “just for fun” send my DNA to my health insurance provider. If I went to a job interview and they asked for a sample of my DNA, I’d tell them they can go fuck themselves, then call an employment lawyer on the way out the front door. Luckily I know a pretty damn good one, but that’s far from the point here. The question is, would you do any of that, or would you feel that’s a violation to your privacy?

Yeeeehaaaw ThEy bE TakINg mAh frEeDomZ!!!

Fuck, these people drive me absolutely goddamn bonkers, and it’s always the same assholes. White, middle-aged, poorly educated, have an affinity for Oakley sunglasses, most certainly drive a truck (gun rack optional, but a Monster Energy logo in the back window mandatory), with a high probability that they have a confederate flag somewhere on their property (yes, even in Canada). They stand on their social media soapboxes, joining groups with the word “patriot” or “proud” in the title, and they post really bad memes that really aren’t funny unless you live in suburbia, and the year is 1952.

“ThEy aIN’t taKiNG maH gunZ” they scream. They go on about how the socialist agenda will blah blah blah and the government is committing crimes of tyranny. They scream about their right to never reveal their medical information and “yOu DOnT haVe A riGHt tO knOw Mah vAccInE stAtUs!!!11!!!!1!!”. You think these people would consent to give a blood sample every time they walked into Walmart. There would be a civil war by the end of the day. Yet, they’re more than happy to ship off their DNA to some company, and they’ll even PAY to do it!

Oh, don’t think I’m just picking on the conservatives. I love you liberal assholes too.

Liberals who are statistically far better educated at college or university levels, & are far more likely to hold highly technical jobs. Just sayin’, I don’t know very many brain surgeons or structural engineers who are begging for Steven Harper to come back to save Canada. You’ve got people who are all about free expression, they’ll live off-grid, or maybe crammed into an 80-story downtown condo. They’d likely think a fingerprint reader on the condo door would be cooler than their key-fob (meanwhile I’d smash that sensor the first moment nobody was looking – Like hell I’m giving some condo corporation my fingerprint). By and large they feel there’s a growing police state happening and aren’t comfortable with more or less handing this much power to the cops. Meanwhile many of them are just as happy to ship off their DNA to some company, and just like the conservatives will cough up $100 to have the honour of giving away their genetic code.

So What Is Going On, Exactly?

Well, you basically spit into a tube and ship that thing to the company who sends it to a lab. That lab sees the package as sample “99043992003661”. They do all their nifty stuff to get your DNA, record it all into this big database, and it’s always labelled as “99043992003661” and never “Paul Hattlmann”. When you login to their website, it then ties Paul Hattlmann to “99043992003661” and you see all this info. Some happy, some could be shocking, maybe even some sad.

As more people ship off their DNA to these companies this data gets linked further and further creating these massive webs of info. It only gets stronger and crazier. As technology breaks new barriers they’ll surely be able to link even more information about your DNA to find out things we haven’t even thought of yet. The thing is, it’s all on file and as long as they have your code, they can use it however the hell the want.

Are You Forgetting About The Possible Risks

It’s easy to get caught up in all the happy things you could learn and forget about the bad. It’s heartwarming if you get to learn about how your great grandfather sailed the golden journey from Europe to Ellis Island, or you get linked to native bloodlines you never knew about. Maybe your family tree was completely lost due to your great-grandparents being slaves and this is a key to your heritage you so desperately want to learn about. Maybe you (knowingly) were separated from your parents at birth and now you’re able to find them!

What about if you were separated from your parents at birth, and you DIDN’T know? Meanwhile, now you’re 40 years old and finding this out is a life shock you weren’t ready for. What if you find out some possible health predispositions you really would have been happier not knowing about? There’s endless stories on Reddit like the guy who bought his Dad one and then his dad realized he was a product of an affair his mother never disclosed to anyone. Or the late 60’s father of 5 who gave a DNA test to each of his kids for Christmas and then found out none of them were his, and they were from like 3 different affairs.

What if you found out you had siblings you never knew about? What if you found a way to contact them and they weren’t aware of ever being adopted? What if they wanted nothing to do with their biological family and here you are busting into their life like a wrecking ball? Is that fair?

OK, so outside of the emotional risks, what about the more statistical ones… What happens when this data is ultimately sold, or there’s a data breach (It’s absolutely a matter of “when”, not “if”). The first people to buy this up will be insurance companies, ESPECIALLY American ones. People they have info on will be FUCKED when that happens, and it’ll open the doors to insurance companies saying “if you don’t submit to a DNA test, we won’t insure you” because now they already have data on 80% of their clients – they want the other 20%. They can’t ask for that now, because the pendulum is strongly in the favour of the clients, not the companies.

After that, you’ll absolutely have people tracker type companies buying it up. They’ll charge potential employers a small fee per lookup, and then provide all that person’s personal info to that employer so they can make a completely biased choice if they want to hire you or not. Oh, you’re predisposed for X or Y medical condition? Meh – that seems too risky for us. After that, more shady services will popup, until this info is basically public entirely as it’s been leaked a bajillion times at this point. Now your neighbours are looking you up and hold prejudices because they found our your second cousin you never knew, and never met was some notorious serial child molester – so CLEARLY your family must be just as terrible – meanwhile nothing is further from the truth.

You’ve Likely Already Consented, Even If You Haven’t.

Every day tens of thousands of people are submitting their DNA to these companies. Even if you refuse to for your entire life, they’re going to have information on you sooner or later. The moment anyone in your bloodline submits a test, they have a key into you. It’s just not quite as clear as they are hoping – so they hope you submit yours too. But, you refuse – just like me.

Think of it this way. Would you feel OK if your sibling, cousin, parent, or child unwillingly took parts of your medical information and just gave it to some company you’ve never heard of and are most certainly not comfortable with? What if that person PAID to give them that information? Wouldn’t you be pretty upset with a deep sense of being betrayed? I sure as hell would. That’s EXACTLY what you’re doing to them when you take one of these tests. You are volunteering information about your family members without their consent. You probably didn’t think about that.

And it’s theirs, FOREVER. Good luck every getting them to completely delete it – even if there’s laws governing that they do if you request it. First of all, if it wasn’t you who submitted the sample, they’ll tell you to pound salt. But even if you’re the one who did the test, they’ll probably refuse anyways. Sure, they may be mandated to do so, but they’ll make you jump through endless loopholes. Cancelling your cable TV without cancellation fees and still getting billed for the next 10 years is easier than getting these companies to delete your data. And even if they claim they’ve deleted it, do you really trust they did? The fact of the matter is, you have absolutely no way of knowing – because if they lie to you and get caught they know there’s no consequences. Sure, they’ll get slapped with some $10k lawsuit, but that’s just the spare change they find in the cushions of their office’s lobby couch every other week, so it’s really not a fine at all. And even then, good luck believing they in fact actually have – even after all that.

Ditch The Test. Keep Your Privacy.

Mom, I love you. I still think it was a really sweet and thoughtful gift. I sincerely do – and I also really appreciate that you understood and accepted that I wasn’t comfortable using your thoughtful gift (I did end up selling it and I think I bought myself a deep frying pan which I use all-the-damn-time). But there’s likely many of you who have received similar gifts and submitted your DNA already. The bad news is, ya – you’re screwed. But don’t feel horrible about it.

Some of the things I’ve written about above are things that are already happening. Some of them are things that are almost certain to in the future, and some of them are “it could happen” scenarios. One could argue there’s some fear mongering in there but I’d disagree. I think laying out the very likely and potential risks isn’t fear mongering, it’s an educated warning based on the way technology is moving. Fear mongering would be telling everyone that they’re going to implant your left ass cheek with a microchip to track you. That’s neither likely, nor probable – at least in this day in age.

Further, we’re not exactly at the stage where your DNA is actively being used against you like I said it can be. That could change tomorrow, but it’s not happening on a commercial scale today. That day may take years to come, and for some of you, that day won’t matter as you’ll be a senior citizen that doesn’t need employment, is already being denied life insurance by everyone under the sun, and chances are you’ll be dead in 10 years anyways so this won’t make a damn difference. But, it will be linking that kid you had in 1982 when you were in your 30’s and married with the kid that you didn’t know you had because you knocked up some woman in the summer of ’69 at Woodstock in the middle of Hendrix playing the star spangled banner on his electric. Shit, that’d be pretty crazy. Pops sure did get around in his younger years!

If you have submitted, consider contacting the company and asking them to delete you data. It’ll probably be a pain in the ass, but it’s at least worth trying. Our laws around privacy and data retention in Canada are considerably better than those south of the border. Some European countries are shining examples of keeping companies in check, where-as others are basically the wild west. Your mileage may vary, but if you have the law on your side, leverage it to get your data expunged for good.

The point of this whole thing is that you may be really curious about your heritage – and that’s normal! But you really need to understand the risks associated with it right now. Unless there’s far better legislation passed to protect the privacy of citizens (ha!), this problem is only going to exacerbate itself. If you’ve read this entire thing and you still want to take a test – that’s a choice you’re going to make and it’s not one that I have any business in. It’s a matter of personal preferences, ethics, and morals. I know where I stand on the matter. The purpose of this article is – if nothing else – hoping that you’re able to make that choice for yourself but in a more informed manner.