Ask HN: Where can I genetically test myself without risking privacy?

https://news.ycombinator.com/item?id=45365420

by technocrat8080 • 10 months ago

11 24 10 months ago

news.ycombinator.com

I've been meaning to screen myself for genetic diseases and do not trust services like 23andMe. What options do I have?

pajko• 10 months ago

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.

vishakh82• 10 months ago

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.

Davidbrcz• 10 months ago

Your doctor ?

2rsf• 10 months ago

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.

clemailacct1• 10 months ago

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

aynyc2• 10 months ago

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

a_tartaruga2• 10 months ago

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

leoh• 10 months ago

Why is a bad idea for a bunch of reasons?

a_tartaruga2• 10 months ago

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.

greazy• 10 months ago

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.

aynyc2• 10 months ago

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.

ampham• 10 months ago

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

gethly• 10 months ago

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.

csomar• 10 months ago

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.

nokya3• 10 months ago

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

technocrat80804• 10 months ago

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.

bruce5113• 10 months ago

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?

nokya3• 10 months ago

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.

Ask HN: Where can I genetically test myself without risking privacy?

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