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Comment by tlb | Hacker News Reader

Do you believe that no genetic tests at all can be useful? Like, even for Huntingtons or Cystic Fibrosis? Or is it just these specific tests you don't trust?

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soneca has a good point here (perhaps accidentally), which is that you'll notice that 23andme doesn't return Huntington's or CF results, and it sounds like the reason is because they would be so useful and predictive of disease.

Which does put 23andme's health results in this realm soneca described of "things that might be interesting, but can't be very actionable because they don't want to scare you by returning actually actionable information to you".

No. What's really happening is that they did provide a lot of probability estimates for some pretty serious stuff - back in the day before the FDA told them to stop doing it. I know because I carry a higher risk allele for a non-trivial disease (along with lower risk alleles for some other non-trivial diseases), and the test placed me in those corresponding statistical risk buckets which are different from the general population.

Then the FDA came down on them like a ton of bricks.

Now it sounds like they're reopening that door, slowly, step by step. I'm all for it.

I agree with your assessment of the situation, but I'd still be very surprised if e.g. a Huntington's test shows up in 23andme, and I think that's because the FDA doesn't trust consumers to react appropriately to receiving serious and actionable information from 23andme.

> the FDA doesn't trust consumers to react appropriately to receiving serious and actionable information from 23andme

So, that is an interesting and valid point. I've thought about it myself. Seems like these tests are something new, and it may take a while before the new thing is absorbed into the culture and it's treated the way it should. Yes, there is still the risk of misunderstanding the information you're getting.

There are also a few simple solutions - e.g. any doctor should be able to help you correctly integrate this information.

>I carry a higher risk allele for a non-trivial disease (along with lower risk alleles for some other non-trivial diseases), and the test placed me in those corresponding statistical risk buckets which are different from the general population.

How do you know this is accurate?

https://mobile.nytimes.com/2013/12/31/science/i-had-my-dna-p...

>23andMe said my most elevated risks — about double the average for women of European ethnicity — were for psoriasis and rheumatoid arthritis, with my lifetime odds of getting the diseases at 20.2 percent and 8.2 percent. But according to Genetic Testing Laboratories, my lowest risks were for — you guessed it — psoriasis (2 percent) and rheumatoid arthritis (2.6 percent).

>In the case of Type 2 diabetes, inconsistencies on a semantic level masked similarities in the numbers. G.T.L. said my risk was “medium” at 10.3 percent, but 23andMe said my risk was “decreased” at 15.7 percent. In fact, both companies had calculated my odds to be roughly three-quarters of the average, but they used slightly different averages — and very different words — to interpret the numbers. In isolation, the first would have left me worried; the second, relieved.

23andme actually does return Cystic Fibrosis results. They just don't in the US due to FDA regulations.

I'm Canadian and have access to the full list of 23andme's health results. I actually found out that I have a recessive CF trait. Not 100% sure that its correct, but definitely something that I'm going to check out before having kids.

I'd much rather have known about that now, than after having a kid with CF.

I am a total layman in biology, genetics, and health, so I have no broader or deeper opinion at all on the subject. I specifically don't believe that this 23andme (or similar) test is any good for your health or useful at all. And selling it as such is dangerous.

Then what are you basing your opinion on?

On articles that I read on the subject (the subject of 23andme tests, not genetics in general) and my own capacity for acquiring information and transforming them into learnings and opinions that I form to better live my life.

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