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  • Privacy

    I have consented to FTDNA sending my DNA "to science" although I then sent them an email withdrawing (not sure it had any effect). I am also thinking about sending it to Genbank but am not sure what it means for my privacy. Can any of you tell me about your experiences? Should I be concerned for my privacy? What kind of personal information will be known apart from the FTDNA number?

    Thank you guys.

  • #2
    If you contribute to FTDNA's mitochondrial DNA research programme then your mtDNA sequence could be used in a peer-reviewed paper and your sequence would be published anonymously on GenBank with information about your ancestral origins. My sequence was one of several thousand used by Dr Behar in this 2012 paper which updated the phylogeny of the mtDNA tree:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3322232/

    All those who contributed were given a note of their GenBank ID in their FTDNA account. Once your sequence is on GenBank it can be used by other researchers. You can do a Google Search using your GenBank ID to identify other papers where it was used.

    As far as I'm aware FTDNA have not published any other mtDNA research papers since 2012. If you want to make your sequence available for research then the best option is to do a direct upload to GenBank. You would need to check that you don't have any medically informative mutations or, if you do, you need to be sure that you are happy sharing your sequence.

    You can find further information about the GenBank process here: https://isogg.org/wiki/GenBank

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    • #3
      Thank you for your answer.
      I don't think I have any medically informative mutation or anything but what if someone has? What's the risk since the donation is anonymous? What about a novel, unheard of mutation? Even if the genome makes the rounds on the internet what's the risk since it is anonymous? I am just asking because DNA is such a serious thing and I don't know how anonymous one truly is when sending a sequence to Genbank. I am trying to analyze the situation through all the possible lens.

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      • #4
        When I submitted my file to GenBank, during the process I received this email (identities and email addresses removed):
        Dear GenBank Submitter:

        It appears that this sequence is your own mitochondrial genome. Because
        GenBank is a public database that is distributed and downloaded by users
        worldwide, you need to be aware that your sequence and any information present
        on the record will be publicly available. Even if you remove the record from
        the database after it has been publicly released, it would still remain in
        other third party databases and be retrievable in Entrez by searches for its
        accession or gi number.

        We have additional questions about your submission:

        [1] Is this your own DNA?
        [2] Was this already submitted to GenBank as part of an
        experimental research study?

        In addition, it is required that your FTDNA kit number be displayed on your
        GenBank flatfile. Please provide your kit number if it was not included with
        your original submission.

        Please answer these questions and confirm whether you want to continue
        with the submission process and make your sequence and all related
        information publicly available.
        I got help from Ian Logan when I submitted my file, as I wasn't successful doing it by myself.

        Since your FTDNA kit number is part of your login (along with your password), FTDNA recommends not sharing your kit number in public, such as in the forums, Facebook, etc. This is because hackers, if they obtain your kit number, could then use methods to determine the password, and thus gain access to your account. If you follow the advice to NOT share your kit number, most people will not know it. If you are in a project for mtDNA or otherwise, the administrators will know your kit number, and presumably your name (or an alias if you've chosen one) associated with it. But since such an admin would already have access to your mtDNA information, I don't think most admins have either the time or need to check their project members' kit numbers in the GenBank database. Haplogroup.org has a page on project member privacy settings.

        If you wish, you can have a custom mitochondrial DNA report done, which will check for mutations linked to medical disorders. The cost is generally less than having a FF test done, on sale.

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        • #5
          Per KATM's post, the custom mtDNA report by Dr. Ann Turner is important.

          IMHO, having the mtDNA test, and then getting the report, is a natural sequence. Otherwise, the test, in insolation, is incomprehensible.

          Ian Logan was also gracious to help submit my file.

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          • #6
            If you do have a medically informative mutation then this will be shared by all your matrilineal relatives. However, as your sequence is being donated anonymously then they will not be able to determine that it affects them unless they also get their mtDNA tested. If you have a novel mutation that has medical implications then your sequence could be used in research. It's only by aggregating large datasets that we learn about which mutations have implications. Most of the published mtDNA sequences are from people who have been diagnosed with illness which is why it's so helpful to have published mtDNA genomes from people without diseases to act as controls.

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