1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

Can someone advise on usefulness of 23andme post-FDA?

Discussion in 'Genetic Testing and SNPs' started by JamBob, Dec 6, 2013.

  1. JamBob

    JamBob

    Messages:
    20
    Likes:
    45
    Hi

    I'm kicking myself as I only ordered my 23andme kit on 29th. According to their website:

    "Customers who purchased kits on or after the FDA’s warning letter of November 22nd will not have access to health-related results. Those customers will have access to ancestry-related genetic information and their raw data without 23andMe’s interpretation of that data. They may receive health-related results in the future, depending on FDA marketing authorization."

    Do you think there is any point in this data (if it doesn't give the health-related results)? Can anything useful be done with the "raw data"? I was hoping to find out stuff like whether or not I have the MTHFR gene or not.

    I have also read that 23andMe are changing to a new chip in the next few weeks. If I had raw results from the new chip - would they be useless? http://blog.23andme.com/news/23andmes-new-custom-chip/

    Do you think I continue with 23andme or get a refund? I don't really have much money so did 23andme because it was affordable.

    thanks for any advice. I'd just started to find out about gene testing - but I haven't done enough research to understand how it works.

    JamBob
  2. Gandalf

    Gandalf

    Messages:
    50
    Likes:
    33
    Germany
    The health risks are useless anyways. The inherited conditions are actually useful. But you can use 3rd party websites to have them analyzed. If your issue is methylation then all you need is raw data anyhow. Also the new chip shouldnt be an issue.
    S.A. likes this.
  3. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,261
    Likes:
    8,925
    Amersfoort, Netherlands
    @JamBob - As Gandalf said, the interpretations by 23andMe aren't particularly useful, and they're also very minimal. You'll still get your raw data (960,000+ SNPs) which you can process on various websites and with various programs, and/or compare with other people.
  4. JamBob

    JamBob

    Messages:
    20
    Likes:
    45
    Thanks - I will wait for the results (if I'd been two days earlier this wouldn't be a problem!!)

    I read that the new chip (V4) will only have 600,000 SNPs (as opposed to 967,000 SNPs the current V3 chip has) - do you think that it will be possible to still use this with third party websites?

    Thanks
  5. PennyIA

    PennyIA Senior Member

    Messages:
    263
    Likes:
    352
    Iowa
    Totally agree. The part I don't get is that the information was so vague and only talked about relevant risk factor of genes. Seriously? That's so unlikely to help guide any medical decisions, at least for me. I already know I have an increased risk of clotting factors - the fact that they tell me I have a slightly lower risk of clotting (because I don't have the FVL gene) and a slightly higher risk of heart disease.... means squat. And this is the information that the FDA has an issue with.
    S.A. likes this.
  6. Aileen

    Aileen Senior Member

    Messages:
    608
    Likes:
    491
    Canada
    I got the 23andMe testing only for the raw data. That is what is important. With the raw data you can look up any SNPs they have tested for.

    So, if a research paper comes out 6 months from now regarding a SNP in connection with our illness and it is the data, I can look it up and see if it applies to me.

    I've been able to assess my methylation status. We can compare with each other and perhaps find something ourselves. I can compare with mutations that show up in other difficult-to-diagnose illnesses and see if perhaps I should be looking into any of those. There could be other issues such as phosphorylation and how my body produces energy etc. that I can look into as I learn more about human physiology and genetics.

    So that I am better able to do this, I've been taking on-line free courses in genetics, biology, physiology, and some pharmacy courses ... Since the most of the medical community is ignoring us, it seems we have to do this ourselves. Yesterday I had a medication-related question I phoned the doctor about. She told me to ask the pharmacist who of course told me to ask the doctor. Why do I have to do everything myself??? :mad::aghhh:
    PennyIA, S.A., spaceboy3000 and 5 others like this.
  7. JAH

    JAH Senior Member

    Messages:
    275
    Likes:
    157
    San Jose
    I am awaiting my results, just snuck in in time for the full report. I am also planning to run my results through two programs, genetic genie (free) and promethease (5$), which is run by the people who created snpedia, a DNA info wiki.
    https://promethease.com/ondemand
    http://geneticgenie.org/

    I'm hoping 23 and me will resolve this issue soon, I expect they will be able to post some type of health summary after negotiating language with FDA. Raw data the most important, I think you will discover a lot, with or without their interpretation, good luck,

    JAH
    S.A. and SickOfSickness like this.
  8. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    405
    Upstate SC, USA
    I don't think JamBob got an answer to this question and I also have the same question concerning the chips and the amount SNP's that are processed with the new chip compared to previous chip?

    Thanks
  9. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,261
    Likes:
    8,925
    Amersfoort, Netherlands
    It depends on what they've got on the new chip. The V3 is missing a ton of known pathogenic SNPs, and many of the SNPs tested for on it are redundant, since everyone who has a certain genotype for one SNP on a gene will always have the same genotype for some of the other SNPs on the gene.

    But it sounds like a cost-cutting measure, and I think they'd have mentioned the increase in useful data and reduction in redundancies, if those were a significant part of the change.

    There's also some crying about "compatibility" with various programs on the 23andMe blogs, but it's an extremely simple matter to make a program to convert results into various formats, so that shouldn't be a consideration at all.
  10. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    405
    Upstate SC, USA

See more popular forum discussions.

Share This Page