We now have technologies that enable us to make, analyze and tweak entire human beings. Amazing. Attention has largely focused on technical capabilities and the risks involved, but not nearly enough on the implications for LIVES, rather than just LIFE.
If ever there was a rich vein of drama to be mined from technological advances directed at humans, it’s not in vitro procedures or gene editing, but rather commercial DNA testing.
It’s basically been the blink of an eye between scientists commencing work on sequencing the human genome and it becoming possible for me or my dog to have a cheap DNA test.
As usually happens when advances occur at that speed, there are consequences most didn’t see coming. That or we just never got around to engineering a framework of sanity because what we were accomplishing was SO COOL.
Commercial DNA testing has enabled everything from better treatment options for heritable medical conditions to hunting down serial killers. These technologies are now fuelling entire cottage industries – books, podcasts, Netflix series! A rich vein of drama, indeed.
But even if you choose to spit in a tube in order to embrace the wonders of technology and all of its potential revelations, keep in mind that you’re not embarking on that adventure alone.
Your DNA isn’t just yours. You got it from your parents, they got it from their parents, and so on. But when you sign up for commercial DNA testing, only you are consenting to their user agreement. Your parents, grandparents, possibly unknown relations: consent not secured.
There have been plenty of stories about DNA tests revealing old family secrets, like who you’ve known as your dad isn’t your biological father. I would suspect, if no one told you about that at any point in the first few decades of your life, it’s likely your parents didn’t want to disclose or discuss it, and, assuming they’re still alive, still don’t.
Do you have the right to force them to address it? There are plenty of arguments to be made, but no easy answers. And I’m pretty sure you can’t submit a support ticket at Ancestry.com to sort that out.
People who use commercial DNA services can tweak their profile settings to customize what information they see, and which other people can access them, but people who aren’t registered on those sites have no such option.
Traditionally, with public adoption, both a biological parent and now-adult child had to register in order to be connected with each other. But if, thanks to the wonders of modern technology, you decide to sleuth out biological relations, they don’t get to decide if they want to know that you exist or not, or what other family secrets and issues may come to light. This Wall Street Journal article digs into that conundrum in a really thoughtful way.
Commercial DNA testing companies’ websites also can’t provide context about the past, like religious, racial or social mores, socio-economic issues, emotional entanglements, acts of violence and everything else that makes up lives and societies (and can create people…).
No matter how many new relations decide to engage with you, and how much family history they know, you’ll never get the full story. Especially if key people involved are deceased.
Ultimately, even though we can peer at the very building blocks of our existence, there is only so much we can learn and understand of someone else’s story, no matter how significant our part.
But, y’know, 23andMe added a support page called “Navigating Unexpected Relationships,” so I’m sure that’ll take care of it. Maybe they’ll add a chatbot, too.
More recently, DNA analysis has resulted in criminals being apprehended. This is great, especially for victims or families who’ve been denied closure, sometimes for decades. On true crime podcasts I’ve heard calls to submit personal DNA profiles to online databases (in the U.S.) to help solve cold cases, largely through the growing field of genetic genealogy.
They even explicitly outline what permissions you have to check off to enable law enforcement to access your data. But they don’t do much to address what your DNA profile can then be used for, or where else your data might end up, especially in the future. Which should be of concern even if you haven’t embarked on a life of crime.
Procuring health information is another big goal when completing a DNA test. Particularly useful for people without ready access to family medical history, like those who are adopted. But then your information is held by a for-profit company that is likely headquartered in a different country.
Included in that information could be things that are or may go wrong with your health in the future. You know what insurance companies call things that are already wrong with you? Pre-existing conditions. They love denying coverage because of those.
Could governments pass laws to prevent companies from denying coverage or charging you astronomical premiums due to your DNA test results? Sure. Would companies deploy vast hordes of lawyers to find loopholes to enable them to still do so? Absolutely.
Ultimately, it all comes down to one problem: data privacy. It may sound like a trite way to sum up the applications of technologies that can rip people’s lives and families apart, but it’s true.
Unfortunately, we all know how safe and private our data generally is and how much money companies make from harvesting and selling it online.
Now, one’s DNA analysis feels a lot more significant and intimate than a social media profile or some emails because of what the content represents, and because until recently NO ONE has had access to that information.
But consider security breaches of accounts containing social insurance numbers, credit card details, medical test results – all of which have happened. Things that can be used to steal identities and hijack lives. Now we’re getting warmer…
I can envision a day when I get a Have I Been Pwned? style alert to let me know my DNA profile has been accessed or purchased by some third-party organization without my consent and for purposes unknown.
I can’t envision a day when I can click a button or submit a form to expressly NOT consent to such actions and to demand my information be immediately expunged and actually have it happen.
Because when it comes to cutting-edge technologies that are SO COOL, in our past, present, and future, more than ever it’s caveat emptor.
M-Theory is an opinion column by Melanie Baker. Opinions expressed are those of the author and do not necessarily reflect the views of Communitech. Melle can be reached at @melle or me@melle.ca.
