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Is 23andme still worth it?

Discussion in 'General ME/CFS Discussion' started by amaru7, Apr 4, 2014.

  1. amaru7

    amaru7 Senior Member

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    Hello

    As you probably know 23andme has shut down medical information service due to FDA pressure.

    There are some other services that can help interpret raw data like genetic genie, but I'm afraid as a new customer one wouldn't be able to obtain the same amount of health information as before.is that right or are there alternatives now that can interpret most of the genes and their meaning?

    I ask because I'm wondering if it would still be worth for me to test 23andme.

    Thank you
    Last edited: Apr 4, 2014
  2. Sea

    Sea Senior Member

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    You still have full access to your raw data which is the greatest benefit of the 23andme test.

    They have now changed to a new chip which tests for around 600 000 snps where the previous one had 967 000. This change has nothing to do with the FDA, 23andme say it is for efficiency and that the snps they've dropped are unneccessary.

    It's certainly still worth the money.
    taniaaust1, amaru7 and Aileen like this.
  3. amaru7

    amaru7 Senior Member

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    I know raw data is available but that doesn't actually answer my question that is, does the customer still have the possibility to get info on interpreting raw data for many disease risk 23andme offered before or only methylation etc through genetic genie?

    AFAIK one cannot just open the raw data file and read the SNPs
  4. taniaaust1

    taniaaust1 Senior Member

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    If one knew what one was looking for one could find out all the health info that 23andME used to offer, the issue is that we often dont. Thankfully thou we have opportunities thou to help us to work it out some eg genetic genes methylation and detox panels as you know.

    I dont know if she is still doing so but Valetijin from this webisite (dont know if I have the name right).. helped many of us get far more info on our raw DNA data then what 23andME ever gave us due to a program she set up re the genes we have which is in 10% of the population or less and pointing out these mutations (Im still needing to research all I found out I had from that).

    Info which then allowed a lot of us here at this website to go and then look up individual mutations we have online at SNP websites.. from that I found out why my daughter had problems with jaundice, why I'd had various issues in the past, found out I have a gene which is only in 1% of the population which increases me getting lyme disease and most scareily found out I have a greatly higher chance of getting lung cancer even as a non smoker (I really got to get my kids to stop smoking!!). Anyway.. I found all this out throu my raw data from 23andME and not via other info they gave me.

    I personally think for the price, it is still very worth it even if you can only work out your methylation panel and detox panel mutations from it throu genetic genie esp you've never been tested for MTHFR mutation (which is very important one to know if you have or not).
    ......

    I'd look it at this way if I hadnt already had 23andME testing done before they changed things. I paid over $400 for a lyme test which was negative.. and that 23andME test is only $99 and did give me much valuable info (even if a person was negative for things like MTHFR at least they are then ruling out this playing a part in methylation cycle issues). The Detox panel has shown me what drugs to avoid (interesting nearly all the ones Ive had bad reactions too were in the drug family which 25% of drugs come from, in which my detox panel said I mutations in). In my case some antiviral drugs could cause life threatening reaction and best to be avoided.
    Last edited: Apr 4, 2014
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  5. barbc56

    barbc56 Senior Member

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    @amaru7

    IMHO, it's not worth it.

    The problem is that not all the SNPs are available and some may interact with SNPs that are not on the test.

    While it's possible some of the information is right, the bottom line is that we simply don't know.

    When you add environmental factors the picture becomes even more complex. Genetisits have years of training to understand the complexities but even then results are seen in terms of probability.

    People have sent two samples and ended up with different results..

    So for me, I wouldn't do it, but then, it's a personal decision.

    Barb
  6. Sea

    Sea Senior Member

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    Barb, people have sent one sample to 23andme and one sample to a different company and ended up with different interpretations not different results. The difference to what you're saying happened is huge.

    There have been many misunderstandings over the risk reports and for that reason I think for now it is a good thing that 23andme aren't doing them anymore. I have seen so many conversations where people have said things like "23andme said my risk for *insert disease name* is low but I have it, therefore the test is faulty". They have not read and understood the risk reports at all.

    Apart from that, no test is perfect. There are occasional mix-ups (human error) as there are with any lab. You can pay thousands of a dollars for some genetic tests and a responsible doctor will still want to double check results before making any radical treatment decisions.

    99% accuracy in 967 000 snps is good enough for me to consider the test very worthwhile. In fact most of the snps that for some reason the test can't be sure of return a "no call" result rather than a possible error.

    It is true that much of the research is in its infancy, and there are many out there offering interpretations or parroting others without any understanding of the research...BUT that does not mean that there is no use in learning about your snps. Many of them do correlate directly with disease or increase the risk of disease.

    I would agree there is little point to having the test done if you are not prepared to follow the research and learn about genetics. I also think that it will be far better when we can have our whole genome sequenced for a reasonable price but that's still a while away yet.
    Last edited: Apr 4, 2014
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  7. Sea

    Sea Senior Member

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    Yes you can read your raw data. There is a function on 23andme called Browse Raw Data where you can search for genes by name or snps by number. You can also download your raw data into a text file and search through it. It is a huge file so I have created a text file for each chromosome to make it easier.

    Promethease gives as much information as 23andme used to on the risks of various illnesses though it is not laid out quite as nicely as the 23andme reports were.

    Valentijn, a member here, has a program that you can run your results through that pulls out a list of rare snps that you have. This can be helpful in a number of ways.

    1. There may be research on the snp that could give you some answers or areas to follow up on with more tests.

    2. They often have no research on them because they are so rare but you can look at the function of the gene that the snp is on and if it seems to fit with any problems you have you can get further testing, either gene testing or clinical testing.

    3. We can compare with others with our illness and see whether a rare mutation pops up far more commonly in our population group than in healthies. Once again that would give a direction to look for clues
    Last edited: Apr 4, 2014
  8. amaru7

    amaru7 Senior Member

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    Thank you sea, that reply has been very helping. One question remains though, is there another way to download/get this program other than through member Valentijn as he/she doesn't seem to be active?
  9. amaru7

    amaru7 Senior Member

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    Plus does 23andme test for mitochondrial DNA? (mtDNA)
  10. Sea

    Sea Senior Member

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    @amaru7 Valentijn is here most days but not all members read everything. If you want to get a member's attention you can tag them like I just did to your name (with an @ then your name) or you can send them a private message also known here as start a conversation.

    Yes, there are snps for mtDNA too.
    amaru7 likes this.
  11. Valentijn

    Valentijn Activity Level: 3

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    I'm here :D The download is at http://sourceforge.net/projects/analyzemygenes/

    I think 23andMe is very useful. It's a bit less so than it used to be, due to cutting back on the number of SNPs tested, but it's still a great value for the price.

    The data which 23andMe no longer displays regarding health risks was probably the least useful aspect, in my opinion. Most of it was very minor changes in risk, which is of very little relevance.
    girlinthesnow, Ema, Sea and 3 others like this.
  12. Cheesus

    Cheesus Senior Member

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    Do you guys think there is a danger with genetic testing of too much info?

    As tania said, she now knows she has a higher chance of getting lung cancer. I'm not sure having that information is a good thing (perhaps for me more than others) as I would feel it hanging over me like the Sword of Damocles for the rest of my life. It would also lead me to fret mercilessly about any future offspring as I already worry more about the health of those around me than my own. I mentioned genetic testing to my ex once and she replied "well I don't think you should do it as it might affect people who want to have babies with you" (it was very cute). I think sometimes these things are better left to the gods.

    Do you guys think the benefits outweigh the risks? Can we routinely glean successful treatment outcomes from genetic testing? Do we want to see a future full of possible health maladies that may not ever materialise? (I am genuinely asking rather than trying to make a point).
    taniaaust1 likes this.
  13. taniaaust1

    taniaaust1 Senior Member

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    yeah I agree but what will people get charged for their whole genome sequencing results? Cost could be so high that most of us couldnt afford it. . Look at paternity testing.. its hundreds of dollars (when I enquired about it years ago, I was quoted $400 for that one test, goodness knows what that test could be now here).

    23andME could tell you that for $198 (the testing for both people).
    Valentijn likes this.
  14. taniaaust1

    taniaaust1 Senior Member

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    For some eg if someone was a hyperchondriac, maybe getting raw data and running it throu Valentijn's program wouldnt be a good idea as lots of things do come up. I personally wouldnt advise someone like that to do this.

    If you worry "excessively" about things, then I'd think maybe for you then it wouldnt be a good idea. I think this is something that people need to really think about before they get tests like this done. People know themselves so should ask themselves if it could be harmful for them or not..

    When the 23andME used to do their health reports, they'd have also closed sections based on ones genotype eg European or whatever, before one got results for things which were of higher risk among the ancestory genotype.. and so one then had a choice on if they wanted to know if one was more suspectable to those serious causing possibly death things or not. eg parkisons disease and Alzeihemers Disease.

    Me being someone who prefers to know well of cause opened those areas and found out that I have a 40% change of getting Alzeihemers from the age of 50 years old. That was/is scary esp since I already do bad brain issues now but then I'd rather now as if my brain is declining further while the rest of my ME isnt.. maybe its something I should be more considering and possibly should see a dr over. The good thing about 23andME was it then gave advice on how to lessen the risk of getting the issue when there was things one could do to decrease risk eg for Alzeihemers ... exercise was one of the things mentioned which would help lower risk (sighs.. something which of cause I cant do).

    If someone is at much higher risk of lung cancer at least if you know this a person try to lessen risk by not being around smokers! Knowing this stuff could help save a life if one was prepared to act on info you are finding out (if one wasnt prepared to be changing their life stuff to lessen any found risks, it probably then would be no benefit knowing these things.

    I only wish I had this kind of testing way earlier. If I had done so, my daughter wouldnt be disabled!!! She was born with an issue similar to spina bifida (her spine is affected and she spent most of her childhood in a wheelchair, is incontient etc she's deformed due to this) .. all cause of my MTHFR mutation which I didnt know I had at the time. Those with this.. need active folate and the normal one we cant convert (so boosting normal folate in pregnancy is not much good for someone with my mutation) Hence my daughter is disabled for life.. something which would of been completely preventable if I'd known I had the MTHFR mutation back then.

    So I guess how benefical these tests are all depend on what a person actually has! and if those things are treatable or not and in the case of MTHFR mutation.. it is important to know if one has before pregnancy (it can also cause miscarriages any stage of pregnancy too.. those too are said to be preventable with the right treatment, in this case baby asprin being taken during pregnancy too).

    Years ago the medical profession in Australia considered making a test for MTHFR issues part of standard medical testing for women (pregnant women) but ended up deciding against doing so due to costs of testing!. 8-19% of people (depending on what country you are in) have this mutation and are at risk of various issues with it not treated eg higher risk of stroke too (women carry the higher risk due to what it can do in pregnancy).
    Last edited: Apr 5, 2014
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  15. Cheesus

    Cheesus Senior Member

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    That is a good way of thinking about it. I used to have very severe hypochondria (my anxiety disorders predates my ME and might have contributed to me later getting sick). However these days I am a very calm person, so it is something I would need to think about.

    I think perhaps the best thing for me to do would be to leave it in the hands of the person who ordered the test (I am seeing an IFM doctor in a few months). I would ask them to let me know of anything I could easily take action on, and to leave the rest to fate.

    Just to note: I currently take Ashwagandha, an ayuverdic adaptogen. I have been reading some studies on it recently and as well as being absolutely great for mental health, it also is an excellent preventative for many diseases including various forms of dementia and cancer, so perhaps it is something you might consider adding to your treatment regime (but don't just take my word for it look at the research). If you're going to get it buy Planetary Herbs Full Spectrum as you get the whole root rather than just an extract.
  16. Leopardtail

    Leopardtail Senior Member

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    Cheesus,

    It all boils down to personality doesn't it?

    If for example you focus on energy metabolism, then it might tell you which supplements you will benefit from and which you should avoid.

    Leo
  17. Leopardtail

    Leopardtail Senior Member

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    @Valentijn does this software report in terms of RS numbers (e.g.RS12345) or the more conventional notation (e.g. MTHFR 637C)?
  18. Valentijn

    Valentijn Activity Level: 3

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    RS number is used, since that's what researchers use and that is what is in the necessary databases.
    Leopardtail likes this.
  19. Allyson

    Allyson *****

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    Yasko is another gentic testing firm I think that gave better interpretion thatn 23 andme


    A
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  20. amaru7

    amaru7 Senior Member

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    Yasko is excellent at what she does and no one that I know comes close at that with her nutrigenomics. She is actually working to bypass genetic weaknesses that leaves most people suffering diseases that is for autism and cfs just like many other chronic conditions
    Last edited: Apr 9, 2014

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