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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

#41

Post by cjbprime »

tlb wrote: post #22
soneca wrote: post #19

My opinion is that this test is useless at the least and dangerous at the most. It provides information that in almost the totality of the cases no one can correctly interpretate and transform in actionable health advice. Not scientists, not doctors, much less consumers. But it is sold as a cutting edge scientific resource that will improve your life. It wont. Not even increasing the chance that you might avoid somet…

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 actually actionable information to you".

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#42

Post by caio1982 »

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 saliva samples and DNA are destroyed after the laboratory completes its work, unless the laboratory's legal and regulatory requirements require it to maintain physical samples."

Also: https://www.23andme.com/en-int/legal/biobanking/

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#43

Post by Florin_Andrei »

soneca wrote: post #19

My opinion is that this test is useless at the least and dangerous at the most. It provides information that in almost the totality of the cases no one can correctly interpretate and transform in actionable health advice. Not scientists, not doctors, much less consumers. But it is sold as a cutting edge scientific resource that will improve your life. It wont. Not even increasing the chance that you might avoid somet…

> 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 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?

Note: I am in the general situation described above. Well, most people probably are, too, one way or another, they just don't know it.

EDIT: Perhaps you're confused because 23andme does not provide this kind of information now. But they did provide it in the past, before the FDA ban. Looks like the ban is now being gradually rescinded, one step at a time, which is good.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#44

Post by technotony »

hartator wrote: post #18
phkahler wrote: post #6

Is there any way to just have your entire genome sequenced and get all the data in a software-friendly format? At that point there could/should be some open source software for analyzing it and finding common or well understood things like this. That way the software could be updated and people could re-run their analysis to look for newly discovered stuff. I think this would be an awesome amount of fun. I for one wo…

Very few companies even scan your entire DNA. 23andMe analyzes for example maybe less than 1 or 2%.

It's way less than that. They scan SNP's, of which there are about 10 million in total. So only 0.3% of the human genome varies between all of us. I think they only do the 602,000[1] most common SNPS, which is only 0.02% of the genome though they might do a few more.

A SNP is a Single Nucleotide Polymorphism, ie places in the genome which vary from the reference human genome by change of one base pair. [1] https://www.snpedia.com/index.php/23andMe_v4_differences

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#45

Post by magic_beans »

dikdik wrote: post #34
kakarot wrote: post #29

DNA readings will soon be the new Horoscopes...

There are already companies out there using DNA sequencing for some absolutely bullshit products...Vinome comes to mind, they suggest wine you might like based on your genome. Personally, I'm all for it though. It's a way to have fun with science. As a scientist, it's nice to have stupid "horoscopes" to keep life interesting.

Whoa. That is a pretty fine gimmick there. I'm amazed that anyone wealthy enough to afford that kind of service would be stupid enough to use it.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#46

Post by Florin_Andrei »

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…

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.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#47

Post by Blahah »

phkahler wrote: post #6

Is there any way to just have your entire genome sequenced and get all the data in a software-friendly format? At that point there could/should be some open source software for analyzing it and finding common or well understood things like this. That way the software could be updated and people could re-run their analysis to look for newly discovered stuff. I think this would be an awesome amount of fun. I for one wo…

OpenSNP is for analysing your own SNP data, which you can download from services like 23andme: https://opensnp.org/

However, sequencing your entire genome is generally not available commercially. If you can find it, expect to pay at least a few thousand dollars for the raw data, and that's just sequencing reads that will need a lot of work to get to anything like a genome. Your best bet might be to try to join a genome sequencing research study and pre-agree to have access to your own data.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#48

Post by TTPrograms »

soneca wrote: post #19

My opinion is that this test is useless at the least and dangerous at the most. It provides information that in almost the totality of the cases no one can correctly interpretate and transform in actionable health advice. Not scientists, not doctors, much less consumers. But it is sold as a cutting edge scientific resource that will improve your life. It wont. Not even increasing the chance that you might avoid somet…

Thanks to the 23andMe test I found out have I think 6 of 8 rare bad variants of various genes that give me what's currently estimated at around a cumulative 50% chance to develop a particular type of leukemia late in life. Of course, 23andMe doesn't provide this information - I came across it accidentally while studying my SNPs with other third party tools.

I don't really think about it that much - experimental treatments for it are already basically curing the disease and if I do get it it probably won't be for another 20 or 30 years. But now I can be the tiniest bit proactive - getting my CBC checked every few years, and watching out for unusual symptoms like fatigue.

The challenge is in communicating these things properly with fair analyses of the probability - we have X model that predicts Y risk, and we have Z error bounds on that. While it's unfortunate that most people lack the education to interpret statistical statements like that, I don't see why that should legally preclude me from getting information relevant to my health without a gatekeeper geneticist to hold my hand through "this variant has 1% prevalence, that means that 1 in a hundred people have it...".

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#49

Post by Analemma_ »

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…

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.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#50

Post by kstrauser »

sushid wrote: post #14
phkahler wrote: post #6

Is there any way to just have your entire genome sequenced and get all the data in a software-friendly format? At that point there could/should be some open source software for analyzing it and finding common or well understood things like this. That way the software could be updated and people could re-run their analysis to look for newly discovered stuff. I think this would be an awesome amount of fun. I for one wo…

Have you already done a 23andMe analysis? If so, you can check out https://promethease.com/ . It's exactly what you're looking for as they have constant updates that make it worth your while to rescan every year or so.

Promethease is awesome. I uploaded my 23andMe data to it and got back the kind of data I'd been hoping for in the first place.

Fair warning: the UI is very geeky. I think any HN reader should be able to find their way around without trouble, but I wouldn't recommend it to my non-technical friends or family.

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