Ask HN: Where can I genetically test myself without risking privacy? | Hacker News Reader

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 think that as long as you can provide physical address where you are able to receive mail under pseudonym, you can use nay service. The main point with these DNS testing services is to prevent them form linking your DNA with your identity. You could maybe even use your company's address or a friend or a family member. It should not matter much. Or try renting a Post Office Box. Or even using one of the mail forwarding services as they are usually able to forward your mail based on id on the recipient without then name of the recipient mattering at all.

I am not sure you understand the privacy implications. I did 23&Me and you do post your DNA only with an email address. These services can detect your relatives (siblings/parents/near-cousins) to close to 100% certainty. Which means they'll be able to deduce who you are from an anon. DNA.

We're building this at Monadic DNA.

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.

Maybe Color Health? They’re clinical and HIPAA compliant but you’ll need to read their policies for the details.

https://www.color.com/genomics

MyHeritage has a long and detailed privacy policy. Seems like that they are aiming to meet EU standards. Don't have personal experience though, and they might not provide everything what you are looking for.

Why not start with your threat model? What are you actually worried about, then let us look into the options.

I only care about testing for genetic health issues. I don't want my DNA to be inserted in a database that can be cross-referenced to check for relatives, ancestry, etc.

This is perhaps an off topic question, but I mean it seriously. What do you hope to gain from knowing your potential genetic health issues?

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?

Thanks for spurring the thought. The main reason I'd like to find out is to avoid bringing a child into the world that might suffer from incurable disease.

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.

Sure, I get that things like Huntingtons would certainly be worth knowing about. But for genetics like that simply looking at your own previous generations would give you the answer there. (And of course, that assumes you have access to that, which clearly not everyone does.)

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.

I sense the undertone here is that there's a cost to genetic testing – did I get that right? Could you expand on that philosophy?

I'm not sure which one of us you're referring to, but the primary "cost" as I see it is disclosing your DNA to some 3rd party, who are then free to use that DNA, or sell it, or whatever as they like.

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.

Okay. Let's assume your top priority is to test for genetic health issues, I will also assume that you either plan on reducing the risk of future complications or you are factoring this information into account when deciding to get children (otherwise, why would you want this information?).

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.

I mostly agree with your first point, but is there not a chance for more serious disease to be detected? In which case specialized preventative care is the best path forward? There is definitely something to be said about staying ignorant of these, however.

> 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.

Yes, I can agree with you, did not think of that and it seems to be a perfectly valid motive.

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?)

It's a bad idea for a bunch of reasons but you could always do it yourself: https://nanoporetech.com/products/sequence/minion

Why is a bad idea for a bunch of reasons?

It is an expensive research project. Actually doing this starting from no experience or tools you're probably looking at 6 months - 1 year and 10k. A little support from trained biologists would help a lot though.

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.

Suggesting ONT is like suggesting getting a cpu without mentioning everything else that's required.

Even then, you'll need expertise in analysing the output reads. And EVEN then it's difficult to accurately assess variants.

no, not in the sense of total privacy. Outside of that, I would at least go with someone that's HIPAA compliance. Your doctor probably is the shortest path.

Your doctor ?

That's the best advice. I have seen some genetic test results. They are not simple to interpret and it is not easy to know what to test for- every person has natural defects and mutations which not always translates to real diseases.

The privacy issue still exists in this scenario.

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

All of them need to follow HIPAA. That's as close to a protection as you can get right now.

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