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  • gene testing and the government

    Here's hoping someone out there might have a decent answer to this question.I was reading the release request for all medical information on a Social Security form, and noticed something that perplexed me. This paper must be signed by the applicant in order to get SS. It requests the normal medical history, but... any and all gene testing data! Now, WHAT? Since when do you need to give the government your DNA results? To me this is none of their business! It's one thing to volunteer for medical discoveries like you must do with 23 and me, but is it necessary to give the government your data just to get your benefits? This is personal data and family history!

  • #2
    Do you mean ordinary old-age (>62) benefits, or disability benefits?

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    • #3
      It is for disability. How ever the same question was asked for (retirement) Social Security. When I asked the representative what testing, she said "any and all gene testing that can show us any future medical problems." So I asked again, you mean like if someone is using gene therapy for some treatment? ie cancer ect. Again she responded "Any and all gene testing." So I walked away confused.

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      • #4
        Originally posted by mari View Post
        It is for disability. How ever the same question was asked for (retirement) Social Security.
        I can imagine that the Obama administration would consider some genetic allele a "disability," but I can see absolutely no sensible reason to ask about genetic testing for old-age (>62) benefits. As you say, it is none of their business.

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        • #5
          That question wasn't on the forms I filled out a few months ago. Must be new.

          I've read that before long every baby is going to be DNA tested at birth, so I expect the government will one day have that information on every individual anyway.

          FTDNA supposedly doesn't collect health info. 23andMe does. Ancestry gives you a choice as far as using the health data (do they honor it, I wonder), but they still have it, whether they use it or not.

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          • #6
            One thing, if the SSA is asking you the question, they must know, or have good reason to believe, that the DNA testing companies will give them access to your test results whenever they like.

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            • #7
              That is very interesting because the total number of dna testers in the US compared to the population is miniscule, a tiny, tiny percentage.

              More micro management of its citizens?
              Last edited by Biblioteque; 28 February 2016, 02:35 PM. Reason: add

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              • #8
                But these DNA companies only test a very small fraction of our entire genome, so how much can SSA actually gain?

                The future of testing every baby, in the article I read, involved the testing of the whole human genome becoming affordable enough to make it possible.

                I also read complaints about it being an invasion of privacy for law enforcement agencies to have access to the DNA tests available here, at Ancestry, etc. If you're going to engage in criminal activities, you have to be pretty stupid to take DNA tests in the first place!

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                • #9
                  It would seem that Social Security disability would be interested more in physician-ordered genetic tests done for a specific medical reason, not information taken from testing done for genetic genealogy purposes.

                  Any medical information derived from these autosomal or mtDNA tests is not why people take the tests (aside from 23andMe), and the tests aren't advertised as such (aside from 23andMe). FTDNA doesn't give customers any health result information, and neither does Ancestry.com, currently.

                  You can take the raw files and use Prometheus to get health information, but even 23andMe and Prometheus are based on studies, and not particularly tailored for an individual. It would seem to me that consumer genetic genealogy tests don't fall within what Social Security wants . . . but, what do I know. It sounds like a legal opinion is needed, or FTDNA needs to answer this question.

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                  • #10
                    Any more info?

                    Mr W

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                    • #11
                      SS request for DNA information

                      Where can I get a copy of this SSN document asking these invasive questions? It is one thing to volunteer this information, but another for it to be required.

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                      • #12
                        Sorry my computer was down for a while or I would have posted this earlier. When I took the paperwork back into the SS office the young man working there answered my question on this fact. Yes it is mostly for any medical inquires. He said though the form is their generic form meant mostly for anyone who had been in the military, as their genetics are already on file. But.. by 2018, if implemented...all newborns will be tested and it will go to their file. At the same time it is possible that, then if any citizen has had their genetics run with any medical info that it too will be on file. And yes, it was the release of all medical info paperwork. Well, all I can say is, Wow! But if you are doing your genetics for family relations then there is no worries as they aren't looking for that. So I guess I got my answer.

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                        • #13
                          Thanks for the update, mari.

                          I wonder if the clerk was talking about this (since you live in California); although actually it's the opposite of what he said:
                          Assemblyman Mike Gatto Introduces DNA Privacy Bill

                          Basically, most if not all newborns in all 50 states are tested now (and have been for some time) for disease purposes (Sickle cell anemia, Cystic Fibrosis, etc.). This is done via a prick on the infant's heel, and the resulting blood drop is saved on a card. The DNA Privacy Bill referred to above is actually to prevent these cards from being saved and sold for outside research use, without the parents' knowledge.

                          These kinds of cards used to be disposed of in most states, once the tests had been run. Maybe the clerk was referring to this type of infant testing in California?

                          Searching the web, I haven't been able to find any information about a national bill proposing any kind of mandatory testing of DNA for newborns, or related to Social Security. No mention of 2018, either, but perhaps my search hasn't been thorough enough.

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                          • #14
                            I don't know if the young man was speaking only for California since this was a federal agency. It has been a long-long time since I had my children and they weren't all born in California, only one was and he was a home birth.I don't think they were testing babies in the 70's So I too looked into this question, and found this.. (altho, the last update on it was 2013 I think) genes-r-us.uthscsa.edu/resources/consumer/state map.htm and https://www.ssa.gov/forms/ssa-827 pdf that last one shows the ss form I was talking about. It's all new to me so I'm learning too.

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