• @[email protected]
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    3428 days ago

    Several years back now, one of my colleagues was very much into the genealogy thing. She had major problems I think with needing to find herself or where she fit in or whatever. She was very much pushing me to try one of the DNA genealogy testing services and I had to be very firm about not wanting to participate in it.

    This is why. My sense of self has never been in question and I don’t need to attribute who or what I am to some people I’ve never met or culture I haven’t participated in or been a part of. I have been considered “other” my whole life by in groups who only wanted me to identify with the bits and pieces of my culture or personality that they approved of and I pretty much had to get over that at a young age in order to not feel inadequate or content with myself.

    As a result these always seemed like services that over promise and under deliver and they ask for way more privileged information than I am comfortable with giving away to anyone (I was skeptical when my doctor wanted me to participate in cancer screening via DNA testing because the only angle I could see for wanting it that would be profitable to an insurance firm was to deny me coverage later). Every time something hits the media about a leak or mismanagement of customer data, I am vindicated in my belief that it’s not worth the price of admission.

    • @[email protected]
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      1428 days ago

      Whenever someone mentioned these services to me, I would respond that I didn’t trust them, and was often called paranoid. Maybe I just don’t trust large companies with my most private data, and I don’t know why others would.

      • Sixty
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        428 days ago

        The usual retort I heard is because someone in your extended family probably did take a DNA test at some point they “practically already have yours.” At least that’s what redditors parroted all the time.

        I don’t know if it is true, because I thought being a couple steps removed from your parents already renders most hereditary DNA unrelated. But I’m just a layman.

        Regardless, it still wouldn’t have been my choice to deliberately self own like that. Just turns me into an unwilling victim instead, much better /s.

    • @[email protected]
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      428 days ago

      It doesn’t even matter anymore if you have participated or not. If any of your family members have, they can correlate the DNA they have with written genealogy records and basically determine your race, ancestry, defects, etc.

      So when the Nazis in power really want to purge for purity, they already have whatever list they need.

    • bean
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      227 days ago

      I also don’t trust these. There is very little regulation and protection. Case in point.

  • Shadow
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    28 days ago

    Well I’m glad I downloaded all my genome data and deleted it a few months ago. It was easy to do, there’s no excuse not to.

      • Shadow
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        228 days ago

        Yes, it’s not worth them fucking around with various pii / gdpr fines. As someone who has worked with pii, we always took deletion requests seriously.

        • @[email protected]
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          126 days ago

          If you read the fine print, they keep your sample data for 2 years after deletion.

          So maybe they actually delete your email address, but the DNA data itself is still definitely there.

        • @[email protected]
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          127 days ago

          But like… deleting the data would lessen the sale price. Much easier to just delete your account and keep the data in an “anonymous” form. How are you (as the consumer) going to ever know if it’s actually deleted?

          • Shadow
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            127 days ago

            No lawyer / accountant is going to sign off on that. It would get flagged as fraud during due diligence and lower the price due to the risks of lawsuits and fines

            • @[email protected]
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              227 days ago

              I’m sure there’s some legal text somewhere that states that deleting only refers to the association with your user account, but the actual genome data will still be kept “anonymized.” There’s just no way in hell that they’re actually deleting it all. Their lawyers are smarter than that.

    • @[email protected]
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      027 days ago

      I felt weird about it when my dad used this 23andMe service. He was very privacy-conscious, so it was uncharacteristic for him. Now he’s dead. I wonder if there’s still any way to get it deleted.

  • Em Adespoton
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    128 days ago

    Who does ancestry.com get to run their sequencing? Because I have a number of relatives who did that. I don’t think it’s 23andme.

    • @[email protected]
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      127 days ago

      Everyone gets to run sequencing, but this post is about 23andme nearing bankruptcy, where they would run an auction for their records, including this genetic information of its customers.

      • Em Adespoton
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        127 days ago

        Yeah; my point is: if 23andme is liquidating, other genetic labs likely aren’t too far behind, and I’d like some warning there too… especially since I have to convince other people to delete their data.

    • @[email protected]
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      128 days ago

      You still have to send it somewhere, at home kits are just about collecting the sample not sequencing it.

      • @[email protected]
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        127 days ago

        They didn’t say what they were testing for. You can do a binary do you have DNA or not test to see if you are in fact a robot or not. All you need is soap and alcohol.

        • Gormadt
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          127 days ago

          Drinking soap makes my stomach upset and drinking alcohol makes me upset, that means I’m a human right?

      • @[email protected]
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        27 days ago

        This thread made me look into the idea of DIYing it, and one of the search results I found looks like it legitimately is about actually doing the sequencing yourself:

        https://techcrunch.com/2016/03/30/citizen-scientists-you-can-now-diy-your-own-dna-analysis/

        $800 in 2016 was steep enough, but at the $1600 it apparently costs today I’m not sure it’s still within the realm of DIY, if it ever really was. I wonder if there are any cheaper competitors?

        • @[email protected]
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          127 days ago

          That allows visualization of PCRed product, which is a far cry from whole genome sequencing. You can visualize a target at a time with no sequence info. Using it for sequences would be extremely tedious and require a lot of runs.

          • Lemminary
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            27 days ago

            Yup, I used to do PCR genotyping. 50 samples running the same setup would take me a whole 12-hour day at my lower end lab.

            I can’t imagine having to do 50 different ones with 50 different templates and having to adjust each one. 😅 And that’s for 50 sequences. How many are there in a human?