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FDA Authorizes Ten 23andme Genetic Health Risk Reports

blog.23andme.com

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Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#71

Post by Florin_Andrei »

cjbprime wrote: post #66
Florin_Andrei wrote: post #46

Earlier quoted context omitted.

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 genera…

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.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#72

Post by Florin_Andrei »

DanBC wrote: post #56
Florin_Andrei wrote: post #43

Earlier quoted context omitted.

> I believe this test is as good as buying your astrological map Yeah, that's vastly overblown, sorry. Let's say the average for the whole population of getting Disease X is 10% over a lifetime. You do the genetic test, and it turns out you carry an allele that's been shown with good confidence to raise that risk to 30%. What you get is not certainty, of course, but a place in a row of statistical buckets. There are…

> There are studies providing solid evidence that Disease X can be typically delayed by years or decades if you do A, B, and C. > Is that information not valuable to you? It depends what A, B, or C are. If it's full mastectomy based on a misunderstanding of statistics then no, that information isn't useful and might be harmful.

I was specifically referring to the non-broken cases where there are no misunderstandings and the studies are valid.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#73

Post by decebalus1 »

caio1982 wrote: post #42
Balgair wrote: post #24

Are they still saying that by submitting a sample to them, that they then own your genome and can sell it to whoever they want? I'd love to get mine sequenced and check it out a bit, but not if they are going to sell it off to a million shady companies whenever they go bankrupt (maybe 50+ years, but still)

"We will not sell, lease, or rent your individual-level information (i.e., information about a single individual's genotypes, diseases or other traits/characteristics) to any third-party or to a third-party for research purposes without your explicit consent." And... "Unless you choose to store your sample with 23andMe (called consent to "bio-banking", which can be found here and changed in your settings), your saliv…

Yeah, for now but in general, that's useless. They have the leverage to change the policy whenever they want as long as they notify the customers at the login screen and via email. And hey, they can change the policy to not even notify anyone. And of course, they can be bought out and the customer data is part of the company value so there's that.

Unless they provide an anonymous way of consuming their product I would never. ever. EVER. give a for-profit company my genetic data (and it's debatable who owns that data because last time I checked lawmakers don't really give a shit about information ownership unless it's about Hollywood) and have them tie it to my name. Fuck that!

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#74

Post by kevindqc »

DanBC wrote: post #56
Florin_Andrei wrote: post #43

Earlier quoted context omitted.

> I believe this test is as good as buying your astrological map Yeah, that's vastly overblown, sorry. Let's say the average for the whole population of getting Disease X is 10% over a lifetime. You do the genetic test, and it turns out you carry an allele that's been shown with good confidence to raise that risk to 30%. What you get is not certainty, of course, but a place in a row of statistical buckets. There are…

> There are studies providing solid evidence that Disease X can be typically delayed by years or decades if you do A, B, and C. > Is that information not valuable to you? It depends what A, B, or C are. If it's full mastectomy based on a misunderstanding of statistics then no, that information isn't useful and might be harmful.

Full mastectomy is kind of excessive, no? I would just be more vigilant for lumps and test more.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#75

Post by d4l3k »

cjbprime wrote: post #41
tlb wrote: post #22

Earlier quoted context omitted.

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?

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 act…

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.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#77

Post by arthurjj »

Balgair wrote: post #24

Are they still saying that by submitting a sample to them, that they then own your genome and can sell it to whoever they want? I'd love to get mine sequenced and check it out a bit, but not if they are going to sell it off to a million shady companies whenever they go bankrupt (maybe 50+ years, but still)

I actually did some market research on creating a service to use 23andMe anonymously because of this worry (I'd call it 32andYou). Essentially the user could pay the service, and then the service would pay 23andMe. At higher paying plans you could pay for the swabs to be sent to a 32andYou shipping address so that 23andMe doesn't even have your mailing address.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#78

Post by dragonwriter »

mrfusion wrote: post #76

The FDA thinks it can decide what I can learn about my own body.

No, the FDA thinks it can decide whether someone can sell a product claiming to diagnose disease. Because, fairly explicitly in the Food, Drug, and Cosmetics Act, it can, and, in fact, is obligated to.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#79

Post by lomnakkus »

caio1982 wrote: post #42
Balgair wrote: post #24

Are they still saying that by submitting a sample to them, that they then own your genome and can sell it to whoever they want? I'd love to get mine sequenced and check it out a bit, but not if they are going to sell it off to a million shady companies whenever they go bankrupt (maybe 50+ years, but still)

"We will not sell, lease, or rent your individual-level information (i.e., information about a single individual's genotypes, diseases or other traits/characteristics) to any third-party or to a third-party for research purposes without your explicit consent." And... "Unless you choose to store your sample with 23andMe (called consent to "bio-banking", which can be found here and changed in your settings), your saliv…

"unless the laboratory's legal and regulatory [...]"

That [...] could hide a lot of shady stuff being done via NSLs (etc.).

EDIT: There is a very interesting issue here, though, namely how the findings by 23andme are presented to their customers. There's good research that shows that presenting relative probabilities[2] (as opposed to just picking a sample size and doing everything in numbers relative to that) is very hard to understand for the general public (and even for statisticians unless they're paying close attention!). The Base Rate Fallacy is basically a consequence of presentation. Hopefully, 23andme are doing this responsibly, but I honestly don't know.

[2]: Example: "Eating X increases risk of cancer by 50%". Well, yeah, that might change my risk of cancer from 0.01% to 0.015%, but that that's not something I should worry about. Yet, we see these headlines because they grab people's attention.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#80

Post by chaostheory »

JumpCrisscross wrote: post #64
Analemma_ wrote: post #49

Earlier quoted context omitted.

Those statements don't seem to say anything about the possibility of your data being acquired by God-knows-who in the event 23andme goes bankrupt.

After the Cloudera incident, I asked them to destroy my genetic sample and data. 23andMe's certification seemed clear that my data were no longer accessible by anyone.

> unless the laboratory's legal and regulatory requirements require it to maintain physical samples.

I could be wrong but in a lot of cases in the US, labs are required to hold data for at least 2 years

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