Privacy vs. Health in Genetic Testing


One of the main issues that comes up around genetic testing is privacy. How do you mine your own genetic code for your own personal reasons without risking exposing it to those with unknown motives?

While we may want to know who we’re related to, what we’re at risk of dying from, or what we’re passing on to our kids, we really don’t want everybody to know this stuff. There are plenty of reasons why governments, insurance companies, and the medical industry want to know all these things and more — which are exactly the same reasons why we want our privacy from them.

As usual, privacy and security are pitted against each other in conventional arguments. And as usual, they are not at odds at all if we get creative and intentional about what we’re designing here.

Yes, it is possible. Sure, it’s slower and a bit of work. You could even call it a hassle. But considering the alternative of either/or with privacy and health, it seems like it’s worth the trouble. I got my genetic testing done anonymously, and I believe everyone should. Unlike most of my medical and dental work, I actually had it done right here in the USA.

Here’s how I did it, and you can too:
  1. had a friend pick up a genetic testing kit at a retail store, paying for it with cash
  2. loaded up a prepaid debit card with just enough money for this transaction, far from where I live
  3. paid for my testing fee under a pseudonym using the prepaid card and secured TOR browser, registered to a physical address of someone who is not related to me and lives in another state, and a single use email that is not associated with me
  4. mailed in my genetic sample from a layover airport while traveling
  5. logged in to see results using VPN-secured alternate browser, declining to answer any survey questions that might be personally identifiable

Nothing above is illegal. It is not required that you use your real name on an elective a medical test like this.

What it is, though, is very hard to track. Probably not impossible, but as improbable as I know how to make it, because:
  • facial recognition can’t link me to the retail purchase
  • debit card not linked to me or used for other transactions that might be linked to me
  • physical address not linked to me in any obvious or at least genetically relevant way
  • postal code on package not linked to me, facial recognition likely evaded
  • IP address obscured, generic email address disposed

As near as I can figure, the weakest security link here is my genetic code itself. But to identify me with that you’d have to have it already, and in that case why would you care about any previous testing I might have had done?

What I lose in this is the ability for people I don’t know to turn up in my family tree. I can see parts of my anonymized ancestral line, but that third cousin I didn’t know I had can’t track me down to say hello. And she might have some weird name she’s never heard turn up in her genetic record, someone she won’t ever find if she goes looking. Sorry! That’s the cost so that no one else can track me down either, now or years from now.

We don’t know what our own future will look like, let alone the future that comes after we’re gone. Maybe it will have all the same identity protections and medical benefits that we now enjoy. Maybe these will get better! But maybe not. Regardless of the odds, it seems an awfully big risk to take, doesn’t it?

In fact, it seems to me like it’s not a risk anyone living could ethically take on behalf of their progeny.

In my case, I am not having kids, and that is a personal decision I made long ago. My genetic line ends with me. I’m ok with that. My brother and sister (both opposite halves, not related) can propagate portions of it if they so choose. They can get genetic testing if they choose too. I’m posting this article for them, and for anyone else who cares to know how to get testing without condemning the generations that carry your code into the future.

We want to use our own genetic information for health purposes, for our families, and maybe some entertainment or connection or cultural enlightenment. How others want to use our genetic information is less clear. While I don’t happen to believe in genetic predeterminism, lots of other people do — including many powerful people who would like to treat it as true whether it is or not.

So yeah, I probably didn’t really need to go to all this identity anonymizing trouble just for my own self. But then…what if we’re wrong? The hassle is a small price to pay for that kind of security.

I look forward to your comments below. Particularly anything that I should have done differently in my anonymizing routine.

Categories ,