8 ms·

I was so excited when 23andMe dropped their prices to $99 a few years ago and immediately gave myself a 'Christmas Present' and bought a 23andMe kit. I serious

I was so excited when 23andMe dropped their prices to $99 a few years ago and immediately gave myself a 'Christmas Present' and bought a 23andMe kit. I seriously thought this was the future. I was so excited to see my health information. It was really cool to see that my spit could confirm that I'm 1/2 asian and 1/2 european. Also, I found it interesting that I have more neanderthal DNA than 99% of people who took the 23andMe test. Other than that, all the things I've seen are marginally useful at best. I log into my account once a year or so when I get an email from 23andMe. I understand these things take a lot of time, but I think a lot of the initial users aren't so ready to tell everyone that they need to sign up for a testing kit. I think people were so much more interested in it years ago.

mmanfrin 11y ago
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
    - 11y ago
- 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.
ap22213 11y ago
If you haven't already, check out http://www.snpedia.com/index.php/SNPedia http://www.snpedia.com/index.php/SNPedia. It's kind of cool to cross reference your SNPs to NIH studies.
smokey_the_bear 11y ago
I enjoyed my 23&me account in general. The one piece of info that I've found 'useful' was my eyecolor genotype. I have brown eyes and my husband has blue eyes. But I have blue and brown alleles, so before we had kids we were able to intelligently guess about their eye color. (It wasn't that useful, but we enjoyed it. We now have one child with blue eyes, and one with brown eyes)
desireco42 11y ago
Same here, we were super enthusiastic over their service. On top of it, some of the 'signals' they gave us are clearly wrong information. So, nothing. We did pay a little more for our tests, but I am not sorry for it, I just wished it worked better.

mmanfrin 11y ago

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
  - 11y ago
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.

ap22213 11y ago

If you haven't already, check out http://www.snpedia.com/index.php/SNPedia http://www.snpedia.com/index.php/SNPedia. It's kind of cool to cross reference your SNPs to NIH studies.

smokey_the_bear 11y ago

I enjoyed my 23&me account in general. The one piece of info that I've found 'useful' was my eyecolor genotype. I have brown eyes and my husband has blue eyes. But I have blue and brown alleles, so before we had kids we were able to intelligently guess about their eye color. (It wasn't that useful, but we enjoyed it. We now have one child with blue eyes, and one with brown eyes)

desireco42 11y ago

Same here, we were super enthusiastic over their service. On top of it, some of the 'signals' they gave us are clearly wrong information. So, nothing. We did pay a little more for our tests, but I am not sorry for it, I just wished it worked better.