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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

#61

Post by TTPrograms »

fudged71 wrote: post #57
TTPrograms wrote: post #48

Earlier quoted context omitted.

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 treat…

This is the purpose of Genetic Counselling. A friend of mine does this and I can certainly see the value in having someone who understands the science walk you through the outcomes.

It's one thing to say "this has value for some people" and another to say "you're legally obligated to do it this way (costing $x more)".

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#62

Post by fudged71 »

sushid wrote: post #55
fudged71 wrote: post #52

Earlier quoted context omitted.

Why would you need to be rescanned? Does your DNA change that often?

Not your DNA, but your Promethease analysis can be redone every year or so as they're constantly adding new analyses.

Makes sense, thanks!

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#63

Post by unethical_ban »

fourstar wrote: post #40
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 ended up canceling my account because of this reason. That and the fact that a bunch of random people started trying to hit me up because apparently we were "linked".

You can turn off the discoverability.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#64

Post by JumpCrisscross »

Analemma_ wrote: post #49
caio1982 wrote: post #42

Earlier quoted context omitted.

"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.

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.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#65

Post by dekhn »

fudged71 wrote: post #53
dekhn wrote: post #8

Earlier quoted context omitted.

I did Illumina UYG. As part of that I got a 1TB hard drive with the nearly-raw files (BAM format with raw reads, VCF with variants). Lots of people say " I for one would be interested in looking for certain gene variants that are not mentioned at all over at 23andMe." but they either never do anything with the data, or they look into it and realize that SNP analysis of gene variants is still a charltan's game.

So what did you do with all the data?

I archived it to cloud storage because I've decided that this raw data has no utility except to waste my time.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#66

Post by cjbprime »

Florin_Andrei wrote: post #46
cjbprime wrote: post #41

Earlier quoted context omitted.

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 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.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#67

Post by berberous »

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…

If you are willing to let your DNA be publicly available online, check out George Church's Harvard-affiliated Personal Genome Project: http://www.personalgenomes.org/

The goal is to have a dataset of free and open genomic data so that scientists can analyze freely and avoid commercial silos of data.

They will sequence your entire genome for free, subject to a backlog caused by funding shortages.

I think you can pay $1,000 to jump to the head of the line. You may also be able to jump to head of the line if you meet certain "interesting" criteria, like willing to have multiple folks in your family get sequenced. Haven't looked into this in a while, so you'll need to check and verify this paragraph.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#68

Post by julian_1 »

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…

People also use 23andme and similar services for reasons other than providing health advice.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#69

Post by berberous »

dekhn wrote: post #8
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…

I did Illumina UYG. As part of that I got a 1TB hard drive with the nearly-raw files (BAM format with raw reads, VCF with variants). Lots of people say " I for one would be interested in looking for certain gene variants that are not mentioned at all over at 23andMe." but they either never do anything with the data, or they look into it and realize that SNP analysis of gene variants is still a charltan's game.

For those interested in doing this, I will second parent. I have my full genome sequenced, and learned basically nothing that was all that interesting or actionable. It is very early days for DNA analysis.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#70

Post by alexbecker »

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…

The "individual-level information" limitation is a huge weasel. 23andMe can and does share "anonymized" aggregations of its clients' genetic information [0]. Anonymization is not a property of a dataset though; it's a property of a dataset and the state of the world, and even if (and this is a big if) the dataset is truly anonymized right now, it won't always be.

[0] "23andMe says that it is also able to share anonymous and pooled data about their self-reported health traits without asking." - https://www.forbes.com/sites/matthewherper/2015/01/06/surpri...

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