8 ms·

Other than that, all the things I've seen are marginally useful at best. Part of it is that the FDA successfully sued 23AM from showing things like health risk

Other than that, all the things I've seen are marginally useful at best. Part of it is that the FDA successfully sued 23AM from showing things like health risks.

ececconi 11y ago
I still see the health risks, like to heart disease, cancer, etc. Might be because I'm grandfathered in?
- toomuchtodo 11y ago
  Correct.
- dragonwriter 11y ago
  Yes, the restriction is on marketing products to diagnose, treat, etc. Once you've bought the product, the FDA doesn't prohibit the seller from continuing to provide service (and, to the extent that they contracted to provide the service, stopping providing the service could leave them liable to the purchaser.)
disantlor 11y ago
You can always export your raw data from 23andMe and plug it into third party (and I guess foreign) services that will give you some health info. Of course you should probably approach the results with some skepticism. I know someone who found out she had a gene that causes an early and very aggressive cancer and now can take pre-emptive measures that quite likely will save her life.
- davorb 11y ago
  > I know someone who found out she had a gene that causes an early and very aggressive cancer and now can take pre-emptive measures that quite likely will save her life. Do you mind if I ask what service she used for this?
  - duked 11y ago
    Not sure what the poster above used but I personally was faced with the same issue. I got my raw data from 23me and used https://www.promethease.com/ https://www.promethease.com/. I think you can do it for free yourself with the desktop version http://www.snpedia.com/index.php/Promethease/Desktop http://www.snpedia.com/index.php/Promethease/Desktop but it takes longer anyway I found some useful information from it but it's to be take with a grain of salt
  - disantlor 11y ago
    I believe she used promethease.com as the other commenter mentioned (which is what I used too). She took the result to the doctor and they did a more thorough test for that specific gene to confirm (which is probably advisable with any serious/negative result before panic).
- robbiep 11y ago
  It is very likely that someone finding this information would have been able to discover it by looking at their family tree. Serious genetic diseases do have a small de novo rate but by and large are already there just being passed down
  - anon1mous 11y ago
    Wrong. For one people used to die a lot younger, many genetic defects will only kill an older, weaker human. For two the environment is different, e.g. many more cancerogens in and around us. Just have a look at the cancer rates. A middle aged man in US today has a 70% chance of getting cancer during his lifetime.
    - robbiep 11y ago
      Sorry mate, what? The op said a friend discovered they had a genetic mutation that lead to an increased risk of cancer. There are several conditions that do this: multiple endocrine neoplasia (types 1 and 2), li fraumeni syndrome (a p53 mutation), familial adenomatous polyposis (apc mutation), hereditary non-polyposis colorectal cancer and a handful of others. All of these present with strong family histories. In fact, patients with APC mutations often have cancer before their 30s. Yet have been successfully passing on this mutation for generations now. If you do not have defective copies of the above (or a small subset of mutations of other regulatory and proto-oncogenes) then you have no greater chance of developing cancer than the next person, lifestyle and virus exposure factors not withstanding. Now I really don't think you have any idea what you're talking about because your two points are at odds with each other: you first state that we are living longer, and defects 'will kill older, weaker humans'. Bullshit. Your next point, that cancer rates are higher now than at some indeterminate point in the past, is also bullshit and out of context: if we are living longer, then of course we are going to get cancer. But this has no bearing on our genetic susceptibility to cancer over a certain age. In fact, there are no known genetic mutations that predispose to cancer later in life; all the syndromes predispose to cancer early. I can only suppose you are trolling very hard, and hence hiding behind 'anon1mous'
- xirdstl 11y ago
  I didn't realize you could get the raw data. I looked a bit on their website and didn't find anything indicating you can. What format(s) will they export?
  - disantlor 11y ago
    Not really sure about formatting options but you can get at it here: https://www.23andme.com/you/download/ https://www.23andme.com/you/download/
  - deleted 11y ago
    [deleted]
billions 11y ago
The FDA put a stop to crowd-DNA research via the 23AM law suit. Prior to the lawsuit 23AM had a large user base completing questionnaires effectively mapping health risks, traits and allergies to genes. Not sure what the Food and Drug administration has to do with my genes other than regulatory overreach.
- dekhn 11y ago
  This is not correct. They put a stop to 23&Me. There is still plenty of crowd-DNA research going on; for example, my genome and some medical information is online via GCG.
  - toomuchtodo 11y ago
    http://www.personalgenomes.org http://www.personalgenomes.org
    - dekhn 11y ago
      Sorry, I meant PGP not GCG (GCG was an old bioinformatics software).
      - toomuchtodo 11y ago
        I too am a PGP participant!
        dekhn 11y ago
        I'm https://my.pgp-hms.org/profile/hu80855C https://my.pgp-hms.org/profile/hu80855C
- gavazzy 11y ago
  They claimed it was a medical device in the same way as a glucose meter.
- refurb 11y ago
dekhn 11y ago
That's not correct. The FDA made them stop doing something they were doing illegally. Their genetic test is a medical device and they didn't have federal approval. Further, when the FDA informed them they needed approval, they didn't respond. The FDA finally had to invoke the law. Also, I don't think 23&Me's test results have enough medical value to be used for evaluating health risks. Further, 23&me's database has serious problems; for exmaple, they still report tongue rolling as a Mendelian trait. That alone shows that they aren't being careful with their analysis.
- streptomycin 11y ago
  Also, I don't think 23&Me's test results have enough medical value to be used for evaluating health risks. For some things they do, like they test for mutations related to Alzheimer's that can drastically alter risk, ranging from "you're probably never going to get it" to "you're probably going to get it, and there's a good chance it'll be much earlier than you would have imagined". But their marketing material was vastly overstating the value of their results, which is near 0 for most diseases. And it was misleading people into thinking it was more comprehensive than it really was (like, it's not a full genome, and it doesn't include every SNP that we know matters like most BRCA mutations).
  - 2bitencryption 11y ago
    Do they actually still show the Alzheimer's information? If so, I'd be very interested in doing that...
    - streptomycin 11y ago
      They don't show any medical information for new customers, but you can analyze it yourself with stuff like https://www.promethease.com/ https://www.promethease.com/
  - dekhn 11y ago
    All of those diseases that 23&Me reported on have existing single-purpose genetic tests which are far more accurate. I've done full-genome too. The report (first from Illumina, then from another site I uploaded my VCFs) was medically useless: I read all the top risks, then did additional research, and found that the risks they reported were contradicted by other SNPs (for example, they'll say you are at risk for X, but only if you have Y SNPs and Z SNPs, and if you check Y and Z you don't have it). In general, you need a genius/expert to analyze these results right now.
robbiep 11y ago
For those of us who got on board before the fda acted, we still get access to all that information. And op is right, it isn't overly useful. I know for example that I am not a carrier of cystic fibrosis, and that I have one copy of ApoE4. But I could have worked that out with a high degree of certainty anyway - I have a first degree relative that died of Alzheimer's and no family history of CF. It remains to be seen that the information they provide is anything more than a curiosity. In fact, it could be dangerous for the uninformed to receive this information: prominent on my 'health risks' page is that I have a 57% risk of cardiac disease, with a big red bar next to it representing that it will likely claim me one day. What it fails to mention is that a white male has a high risk of cardiac disease anyway, and putting a giant red bar next to the words cardiac disease without this context is not likely to be confidence inspiring
anon1mous 11y ago
FDA is US only. 23AM has a lot of customers from the rest of the world, that get all the health analysis.
hugh4 11y ago
So why not shift operations to a less restrictive country? Make people tick a box that says "I am currently outside the United States" to receive the fancy information, if necessary.

Other than that, all the things I've seen are marginally useful at best. Part of it is that the FDA successfully sued 23AM from showing things like health risks.

ececconi 11y ago

I still see the health risks, like to heart disease, cancer, etc. Might be because I'm grandfathered in?

toomuchtodo 11y ago
Correct.
dragonwriter 11y ago
Yes, the restriction is on marketing products to diagnose, treat, etc. Once you've bought the product, the FDA doesn't prohibit the seller from continuing to provide service (and, to the extent that they contracted to provide the service, stopping providing the service could leave them liable to the purchaser.)

disantlor 11y ago

You can always export your raw data from 23andMe and plug it into third party (and I guess foreign) services that will give you some health info. Of course you should probably approach the results with some skepticism. I know someone who found out she had a gene that causes an early and very aggressive cancer and now can take pre-emptive measures that quite likely will save her life.

davorb 11y ago
> I know someone who found out she had a gene that causes an early and very aggressive cancer and now can take pre-emptive measures that quite likely will save her life. Do you mind if I ask what service she used for this?
- duked 11y ago
  Not sure what the poster above used but I personally was faced with the same issue. I got my raw data from 23me and used https://www.promethease.com/ https://www.promethease.com/. I think you can do it for free yourself with the desktop version http://www.snpedia.com/index.php/Promethease/Desktop http://www.snpedia.com/index.php/Promethease/Desktop but it takes longer anyway I found some useful information from it but it's to be take with a grain of salt
- disantlor 11y ago
  I believe she used promethease.com as the other commenter mentioned (which is what I used too). She took the result to the doctor and they did a more thorough test for that specific gene to confirm (which is probably advisable with any serious/negative result before panic).
robbiep 11y ago
It is very likely that someone finding this information would have been able to discover it by looking at their family tree. Serious genetic diseases do have a small de novo rate but by and large are already there just being passed down
- anon1mous 11y ago
  Wrong. For one people used to die a lot younger, many genetic defects will only kill an older, weaker human. For two the environment is different, e.g. many more cancerogens in and around us. Just have a look at the cancer rates. A middle aged man in US today has a 70% chance of getting cancer during his lifetime.
  - robbiep 11y ago
    Sorry mate, what? The op said a friend discovered they had a genetic mutation that lead to an increased risk of cancer. There are several conditions that do this: multiple endocrine neoplasia (types 1 and 2), li fraumeni syndrome (a p53 mutation), familial adenomatous polyposis (apc mutation), hereditary non-polyposis colorectal cancer and a handful of others. All of these present with strong family histories. In fact, patients with APC mutations often have cancer before their 30s. Yet have been successfully passing on this mutation for generations now. If you do not have defective copies of the above (or a small subset of mutations of other regulatory and proto-oncogenes) then you have no greater chance of developing cancer than the next person, lifestyle and virus exposure factors not withstanding. Now I really don't think you have any idea what you're talking about because your two points are at odds with each other: you first state that we are living longer, and defects 'will kill older, weaker humans'. Bullshit. Your next point, that cancer rates are higher now than at some indeterminate point in the past, is also bullshit and out of context: if we are living longer, then of course we are going to get cancer. But this has no bearing on our genetic susceptibility to cancer over a certain age. In fact, there are no known genetic mutations that predispose to cancer later in life; all the syndromes predispose to cancer early. I can only suppose you are trolling very hard, and hence hiding behind 'anon1mous'
xirdstl 11y ago
I didn't realize you could get the raw data. I looked a bit on their website and didn't find anything indicating you can. What format(s) will they export?
- disantlor 11y ago
  Not really sure about formatting options but you can get at it here: https://www.23andme.com/you/download/ https://www.23andme.com/you/download/
- deleted 11y ago
  [deleted]

billions 11y ago

The FDA put a stop to crowd-DNA research via the 23AM law suit. Prior to the lawsuit 23AM had a large user base completing questionnaires effectively mapping health risks, traits and allergies to genes. Not sure what the Food and Drug administration has to do with my genes other than regulatory overreach.

dekhn 11y ago
This is not correct. They put a stop to 23&Me. There is still plenty of crowd-DNA research going on; for example, my genome and some medical information is online via GCG.
- toomuchtodo 11y ago
  http://www.personalgenomes.org http://www.personalgenomes.org
  - dekhn 11y ago
    Sorry, I meant PGP not GCG (GCG was an old bioinformatics software).
    - toomuchtodo 11y ago
      I too am a PGP participant!
      - dekhn 11y ago
        I'm https://my.pgp-hms.org/profile/hu80855C https://my.pgp-hms.org/profile/hu80855C
gavazzy 11y ago
They claimed it was a medical device in the same way as a glucose meter.
refurb 11y ago

dekhn 11y ago

That's not correct. The FDA made them stop doing something they were doing illegally. Their genetic test is a medical device and they didn't have federal approval. Further, when the FDA informed them they needed approval, they didn't respond. The FDA finally had to invoke the law. Also, I don't think 23&Me's test results have enough medical value to be used for evaluating health risks. Further, 23&me's database has serious problems; for exmaple, they still report tongue rolling as a Mendelian trait. That alone shows that they aren't being careful with their analysis.

streptomycin 11y ago
Also, I don't think 23&Me's test results have enough medical value to be used for evaluating health risks. For some things they do, like they test for mutations related to Alzheimer's that can drastically alter risk, ranging from "you're probably never going to get it" to "you're probably going to get it, and there's a good chance it'll be much earlier than you would have imagined". But their marketing material was vastly overstating the value of their results, which is near 0 for most diseases. And it was misleading people into thinking it was more comprehensive than it really was (like, it's not a full genome, and it doesn't include every SNP that we know matters like most BRCA mutations).
- 2bitencryption 11y ago
  Do they actually still show the Alzheimer's information? If so, I'd be very interested in doing that...
  - streptomycin 11y ago
    They don't show any medical information for new customers, but you can analyze it yourself with stuff like https://www.promethease.com/ https://www.promethease.com/
- dekhn 11y ago
  All of those diseases that 23&Me reported on have existing single-purpose genetic tests which are far more accurate. I've done full-genome too. The report (first from Illumina, then from another site I uploaded my VCFs) was medically useless: I read all the top risks, then did additional research, and found that the risks they reported were contradicted by other SNPs (for example, they'll say you are at risk for X, but only if you have Y SNPs and Z SNPs, and if you check Y and Z you don't have it). In general, you need a genius/expert to analyze these results right now.

robbiep 11y ago

For those of us who got on board before the fda acted, we still get access to all that information. And op is right, it isn't overly useful. I know for example that I am not a carrier of cystic fibrosis, and that I have one copy of ApoE4. But I could have worked that out with a high degree of certainty anyway - I have a first degree relative that died of Alzheimer's and no family history of CF. It remains to be seen that the information they provide is anything more than a curiosity. In fact, it could be dangerous for the uninformed to receive this information: prominent on my 'health risks' page is that I have a 57% risk of cardiac disease, with a big red bar next to it representing that it will likely claim me one day. What it fails to mention is that a white male has a high risk of cardiac disease anyway, and putting a giant red bar next to the words cardiac disease without this context is not likely to be confidence inspiring

anon1mous 11y ago

FDA is US only. 23AM has a lot of customers from the rest of the world, that get all the health analysis.

hugh4 11y ago

So why not shift operations to a less restrictive country? Make people tick a box that says "I am currently outside the United States" to receive the fancy information, if necessary.