Ask HN: Where can I genetically test myself without risking privacy? I've been meaning to screen myself for genetic diseases and do not trust services like 23andMe. What options do I have? |
Ask HN: Where can I genetically test myself without risking privacy? I've been meaning to screen myself for genetic diseases and do not trust services like 23andMe. What options do I have? |
I recently posted about our first stab at this at https://vishakh.blog/2025/07/08/using-mpc-for-anonymous-and-....
We'll have a waitlist up pretty soon for people to sign up for a batch of private sequencing.
In the first case (reducing risk factors), chances that you will at least check positive for one thing are almost 1 (certain) and you don't need a test to know that. In almost all cases, limiting the risk will involve a) eating well b) stopping alcohol / smoking c) regular physical activity d) taking some Aspirin for the remainder of your life. You don't need the test results to start doing this. Either you sincerely want to live longer and shouldn't wait for genetic screening to take your matters into your own hands, or you think that test results will suddenly turn you into a monk. News flash: won't happen.
In the second case (whether or not to procreate): any decision you make on the hypothesis that your children will inherit it and that science will not have solved it in the next 50 years will very likely be a bad reason to not have children (there are many good reasons to not have children, though, but having a rare genetic conditions is not a good reason).
The only people who should not have kids are bad parents and people who don't want kids. Guess what? These two groups that probably have the highest amount of kids on Earth.
If the report showed you had a chance of developing say Parkinsons, how would that change your life now? Could you implement those changes regardless?
I mean, pretty much all genetic markers are just "risk". And lifestyle choices (smoking, drinking, sugar, exercise et al) seem to be well known, and "good for everything". So, knowing that, it seems like there's lots you can do regardless of genetics.
I confess, for me personally, I'm not really interested in my genetic risk factors. Much less my Neanderthal content. Hence the genuine question- what will it tell you thst you care about?
Even then, you'll need expertise in analysing the output reads. And EVEN then it's difficult to accurately assess variants.
Using DIY tools and not being a trained biostatistician or whoever usually looks at these things you are very likely to face errors you don't know how to account for. I would guess the odds are high you'll encounter scary false positives for example.
It sounds really fun though, something I've always wanted to do with more time.
All doctors (including concierge) use 3rd party services for practically everything from blood work to imaging to application products. It’s safe to say that it’s very likely that they’ll outsource the genetic testing to a 3rd party
> The only people who should not have kids are bad parents and people who don't want kids.
I don't think people who are highly susceptible to birthing malformed children should have children either. Genetic testing helps figure out if you might be in that group.
Still, I wonder: who would fall in the "highly susceptible" category? Wouldn't these people need to be tested prior to actually knowing they should be tested? (what would push someone to be tested for susceptibility of birthing malformed children before being tested?)
Largely agree with your point on preventative actions being the same with or without testing, but there is a tail end that might warrant specialized action.
Having children is obviously a big responsibility, and every parent wants only the best for them. Doing genetic testing can at least feel like you've done your due diligence.
I would point out though that genetic diseases are a tiny tiny fraction of the things that can go wrong. The overwhelming majority of children turn out fine. But some don't. That's life I'm afraid. Genetic testing isn't a guarantee they'll be OK. I'd go so far as to suggest it's basically meaningless in that context (especially if you have access to parents, grandparents etc.)
However you progress, I wish you well.
So, in a sense, if you use a DNA service you are essentially putting your unique DNA marker "into the world", and it can be identified to you (especially if any of our relations have also been tested.)
While there may not be any immediate implications, that DNA might be used by law enforcement, insurance companies, employers etc (either now or in the future.) So there are potentially "high costs" - we just don't know what they are yet. But this bell cannot be unrung.
Balancing this possible harm are the possible benefits. Personally, I don't really see any compelling benefits, but my goal with this reply to the original question was to determine if I was missing something.