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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?
- aynyc 1y agono, 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.
- deleted 1y ago[deleted]
- pajko 1y agoMyHeritage 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.
- vishakh82 1y agoWe'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-private-dna-analysis/ 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.
- Davidbrcz 1y agoYour doctor ?
- 2rsf 1y agoThat'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.
- clemailacct1 1y agoThe 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
- aynyc 1y agoAll of them need to follow HIPAA. That's as close to a protection as you can get right now.
- a_tartaruga 1y agoIt's a bad idea for a bunch of reasons but you could always do it yourself: https://nanoporetech.com/products/sequence/minion https://nanoporetech.com/products/sequence/minion
- leoh 1y agoWhy is a bad idea for a bunch of reasons?
- a_tartaruga 1y agoIt 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.
- greazy 1y agoSuggesting 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.
- ampham 1y agoMaybe Color Health? They’re clinical and HIPAA compliant but you’ll need to read their policies for the details. https://www.color.com/genomics https://www.color.com/genomics
- gethly 1y agoI 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.
- csomar 1y agoI 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.
- nokya 1y agoWhy not start with your threat model? What are you actually worried about, then let us look into the options.
- technocrat8080 1y agoI 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.
- bruce511 1y agoThis 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?
- technocrat8080 1y agoThanks 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.
- bruce511 1y agoSure, 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.