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I hate the way they delete data from autosomal test

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  • I hate the way they delete data from autosomal test

    What stops me from recommending FTDNA autosomal testing ("family finder") to those who ask me for a recommendation is the fact that FTDNA deletes 3000 snps from the raw data. So even if you download your raw data, those "medically relevant" snps will be missing! They sequenced your data as part of the Illumina chip, but then they won't let you have them. I understand that FTDNA does not provide medical analyses,nor will they (nor should they) answer medical questions. All of that is of course fine, but that is very different than playing this weird big brother patronizing role in which they actively go out of their way to delete your data and prohibit you from accessing it. I'd love to find out theyve changed their policy on this - if so, I will happily change my recommendation to folks to use ftdna for autsomal testing as well as Y and mtdna. (it does not bother me that they delete any mtdna and Y data that came automatically with the illumina chip since they are in the buisness of selling sepearate mtdna and Y specialty testing and do it much better than the illumina chip)

  • #2
    I think those SNPs are deleted so that Family Finder complies with what the FDA says about medical testing. If medical data is obtained, some states require nonsense like a doctor's prescription, etc.

    Looking at the big picture, they delete very little, but by doing so, are able to distribute to a far larger population with apparently no harrassment from the government.

    Timothy Peterman

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    • #3
      That would be ok but I'm pretty sure that's not the case. Consider Full mtdna (FGS) testing - that also provides tons of medical info, but they (Ftdna) don't delete any of the snps in those data. I think they just have to refrain from providing any medical analysis to be in compliance . So nice try but still pissed. Destroying DNA data to me seems to be the opposite of what DNA testing is all about- revealing hidden secrets. DNA doesn't lie - and so the response is you keep it from people? Why? I'm sure my beef really is with the government - anything anti-knowledge pushes my buttons. But ftdna is playing along when it does not have to. ( and they don't for mtdna)

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      • #4
        Is that why the autosomal results I downloaded in 2012 (...results.csv.gz) were 7,568 KB,
        but the results downloaded in 2014 were -
        for Build36 - (which should have been the same as the results in 2012, I would have thought!!) - 6,291 KB
        and for Build37 - 6,292 KB (all as reported under "Size" on my Flash Drive)??

        Had they been including those genes, then started deleting that info -- or does something else account for this shrinkage in file size?

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        • #5
          Originally posted by loobster View Post
          Is that why the autosomal results I downloaded in 2012 (...results.csv.gz) were 7,568 KB,
          but the results downloaded in 2014 were -
          for Build36 - (which should have been the same as the results in 2012, I would have thought!!) - 6,291 KB
          and for Build37 - 6,292 KB (all as reported under "Size" on my Flash Drive)??

          Had they been including those genes, then started deleting that info -- or does something else account for this shrinkage in file size?
          They have redacted a few thousand medical SNPs from the very beginning. FTDNA moved to a new version of the Illumina chip a little while back (I don't know the exact date), which can run more samples at a time. Rebekah posted that the difference was about 3,000 SNPs.

          http://forums.familytreedna.com/show...6&postcount=17

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          • #6
            Originally posted by penguin View Post
            What stops me from recommending FTDNA autosomal testing ("family finder") to those who ask me for a recommendation is the fact that FTDNA deletes 3000 snps from the raw data. So even if you download your raw data, those "medically relevant" snps will be missing! They sequenced your data as part of the Illumina chip, but then they won't let you have them. I understand that FTDNA does not provide medical analyses,nor will they (nor should they) answer medical questions. All of that is of course fine, but that is very different than playing this weird big brother patronizing role in which they actively go out of their way to delete your data and prohibit you from accessing it. I'd love to find out theyve changed their policy on this - if so, I will happily change my recommendation to folks to use ftdna for autsomal testing as well as Y and mtdna. (it does not bother me that they delete any mtdna and Y data that came automatically with the illumina chip since they are in the buisness of selling sepearate mtdna and Y specialty testing and do it much better than the illumina chip)
            If you look up some of the medically revelant SNPs you would become a nervous wreck. One of the SNPs that I have is connected to autism but I am not autistic.

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            • #7
              Originally posted by 1798 View Post
              If you look up some of the medically revelant SNPs you would become a nervous wreck.
              Maybe YOU would become a nervous wreck, but please don't assume everyone else would, too. Like I said - big brother. Someone decides "the public" is not capable of understanding info on their own and will panic and we must protect them from that...Jeez. If someone chooses not to know the results at a particular snp, all they have to do is not look it up!

              I suppose for those are the sort that they can't keep themselves from eating the whole bag of cookies at once if they have it in the house and who do not want medical info,I have no objection to an "opt out" of those snps - ftdna can play the role of hand holding for an adult if they want, just don't keep it from the rest of us. At least the makers of the Illumina chip were not so backwards.

              @loobster- I also was under impression that the snps were removed from the very beginning - it's possible that there was some unrelated quality control check from one build to the next and certain snps were found unreliable - i guess if one really wanted to know, you can compare the two files and see if there's any pattern to the snps that were removed from your data

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              • #8
                Originally posted by penguin View Post
                Maybe YOU would become a nervous wreck, but please don't assume everyone else would, too. Like I said - big brother. Someone decides "the public" is not capable of understanding info on their own and will panic and we must protect them from that...Jeez. If someone chooses not to know the results at a particular snp, all they have to do is not look it up!

                I suppose for those are the sort that they can't keep themselves from eating the whole bag of cookies at once if they have it in the house and who do not want medical info,I have no objection to an "opt out" of those snps - ftdna can play the role of hand holding for an adult if they want, just don't keep it from the rest of us. At least the makers of the Illumina chip were not so backwards.

                @loobster- I also was under impression that the snps were removed from the very beginning - it's possible that there was some unrelated quality control check from one build to the next and certain snps were found unreliable - i guess if one really wanted to know, you can compare the two files and see if there's any pattern to the snps that were removed from your data
                Hello Superman.

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                • #9
                  Originally posted by penguin View Post
                  Maybe YOU would become a nervous wreck, but please don't assume everyone else would, too. Like I said - big brother. Someone decides "the public" is not capable of understanding info on their own and will panic and we must protect them from that...Jeez. If someone chooses not to know the results at a particular snp, all they have to do is not look it up!

                  I suppose for those are the sort that they can't keep themselves from eating the whole bag of cookies at once if they have it in the house and who do not want medical info,I have no objection to an "opt out" of those snps - ftdna can play the role of hand holding for an adult if they want, just don't keep it from the rest of us. At least the makers of the Illumina chip were not so backwards.

                  @loobster- I also was under impression that the snps were removed from the very beginning - it's possible that there was some unrelated quality control check from one build to the next and certain snps were found unreliable - i guess if one really wanted to know, you can compare the two files and see if there's any pattern to the snps that were removed from your data
                  I agree with you. It should be up to one self to decide if you want to look up medical stuff or not. I am not surprised though, as a person living outside of US, I see this pattern all over the US regarding any subject, not just DNA testing.

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                  • #10
                    @peter - yes, I agree with you completely. This seems to be all over the US and one of the big things that makes it difficult for me to be a patriot. For many basic quick web searches, like medical info, I will look for non US sites because US sites say vague useless big brother things like "ask your doctor about X" or "your doctor may order some tests" whereas non US sites for consumers, like UK, well go through specifically what those tests are in detail, for example. If a person doesn't understand, its of course up to them to then "ask their doctor" if they'd like, but there's an attitude pretty much everywhere else in democratic first world countries of conveying the maximium amount of accurate info possible and its up to to consumers to do what they like with that info. Sorry that is off-topic, but your mentioning the US and it being a widespread issue let me to let you know I agree with you.
                    so we need a UK or Swedish or wherever place that is the equivelent of the US genetic direct toconsumer companies but w/o the backwards nonsense. I had liked DecodeMe (non US, very science oriented)- but it was pretty much driven out of business by 23andme. They both started out at I think either 1 thousand dollars for autosomal testing; i was going to go with decode me after careful comparison, but when i was ready to test, decode me had gone up to 2000 in price and 23andme had gone down to 650 dollars. At least 23andm doesn't remove snps, though its new custom chip is a step backward.
                    Last edited by penguin; 2nd June 2014, 12:12 PM.

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                    • #11
                      @1798 - I don't know if I'm superman- I guess I'll have to check my genes. Wait! I can't - ftdna redacted those snps!

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                      • #12
                        Originally posted by penguin View Post
                        @1798 - I don't know if I'm superman- I guess I'll have to check my genes. Wait! I can't - ftdna redacted those snps!
                        You can be sure of one thing and that is they had a good reason for doing so.

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                        • #13
                          Originally posted by 1798 View Post
                          You can be sure of one thing and that is they had a good reason for doing so.
                          To poster "1798"

                          What is that reason (for withholding data)? I still don't get it. I'm not trying to convince you that you should be forced to look at info that you do not want to- its your choice. My argument is not to take away that choice from each individual. Why should one person's feelings ever take away the choice of a different individual who may have very different feelings? Some of us believe knowledge is power/the best approach - again, for ourselves, not trying to force it on others who feel differently.

                          That's why the best policy is always to let each adult person decide for themselves - no one knows what is best for an adult than the adult himself/herself - anyone who says they know what's best for another is being oddly and innapropriately paternalistic.

                          The data is already there. The only thing that might make sense is if they are worried about a potential lawsuit- it always comes down to money. Otherwise going out of their way to withhold info they already have from a person sounds like something "they" might to do in the year- I don't know - 1798?

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                          • #14
                            Originally posted by penguin View Post
                            To poster "1798"

                            What is that reason (for withholding data)? I still don't get it. I'm not trying to convince you that you should be forced to look at info that you do not want to- its your choice. My argument is not to take away that choice from each individual. Why should one person's feelings ever take away the choice of a different individual who may have very different feelings? Some of us believe knowledge is power/the best approach - again, for ourselves, not trying to force it on others who feel differently.

                            That's why the best policy is always to let each adult person decide for themselves - no one knows what is best for an adult than the adult himself/herself - anyone who says they know what's best for another is being oddly and innapropriately paternalistic.

                            The data is already there. The only thing that might make sense is if they are worried about a potential lawsuit- it always comes down to money. Otherwise going out of their way to withhold info they already have from a person sounds like something "they" might to do in the year- I don't know - 1798?
                            Perhaps I am different. I took all these tests for family history.Maybe if you write to them and ask them nicely they will give you the data that you want.

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                            • #15
                              Roberta Estes has a blog post about the FDA, which might be relevant to this thread.

                              http://dna-explained.com/2014/06/08/...tic-genealogy/

                              I'm unable to follow the video myself, due to my hearing difficulties.

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