Maybe a naive question, but Is there a service like 23 and me but that doesn’t collect/keep my genetic information ? @nostupidquestions@lemmy.world

  • QuarterSwede@lemmy.world
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    1 year ago

    It’s absolutely abusive that in order to get your genetic background you have to be willing for the government to have your DNA.

    • EvilHaitianEatingYourCat@lemmy.world
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      1 year ago

      It’s not even gouvernement, it’s other companies. One day some insurance company will decide to pull out your protections because, turns out, you have X% chances to get a cancer by your 40. Then all other insurance companies do the same. Then, one of them accepts you, but you gotta pay N% more for the same coverage

    • Sparky678348@lemm.ee
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      1 year ago

      What are the potential downsides of the government having your DNA? I don’t think I can think of any for real

      I mean other than getting in the fingerprint registry if you’re trying to commit a crime I guess

      • my_hat_stinks@programming.dev
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        1 year ago

        You’re absolutely right, I can’t think of a single point in history where there was mass persecution of any particular group by a government which might have been far more efficient of they had a handy database of every citizens DNA. Just never happens, not once in all of history. There’s definitely no shining example less than a century ago.

      • abbadon420@lemm.ee
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        1 year ago

        What if the government in the nearby future decides it is illegal to watch porn? They trace your ip to your house, come with a search warrant, find you cumsock or vibrator covered in dna and you’re in the system. Boink! Off to horny jail with you!

      • EvilHaitianEatingYourCat@lemmy.world
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        1 year ago

        Copy pasting my other comment

        One day some insurance company will decide to pull out your protections because, turns out, you have X% chances to get a cancer by your 40. Then all other insurance companies do the same. Then, one of them accepts you, but you gotta pay N% more for the same coverage

      • XbSuper@lemmy.world
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        1 year ago

        Both of the responses to your comment are batshit lol.

        I don’t like the idea of the government having my dna, but does anyone have a genuine (non irrational) reason it would be bad?

        • kaiomai@lemmy.world
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          1 year ago

          The cumsock comment was batty, yes, but the other is absolutely on point. You are delusional if you think this can’t go wrong.

        • TheDoctorDonna@lemmy.world
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          1 year ago

          Capitalism won’t let anything about you be yours if it can be avoided and the government works for the corporations. With enough money and government interference anything is possible and it is utterly naive to think otherwise.

        • my_hat_stinks@programming.dev
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          1 year ago

          The US alone has a rich history of repression (Wikipedia even has a sub-subcategory specifically for ethnic cleansing) and it’s common knowledge those DNA databases have been used by US police to track people down so it’s really not difficult to link those two concepts. These are concrete examples of things the US government does or has done, not some hypothetical scenario.

          And that’s all assuming the data is only accessible to governments that have to pretend to care about their citizens, not the for-profit companies and malicious actors that currently do have access to that data.

  • Otter@lemmy.ca
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    1 year ago

    I’ve been wondering this myself. I don’t really agree with the other comments saying it’s impossible.

    We do genetic testing on the medical side and that data is kept private. I don’t see why a company couldn’t offer similar stuff, paid privately, for a more comprehensive suite of tests. You could learn about your risk factors and keep the data private.

    On the history/ancestry side, it could pick out known biomarkers to trace back from publicly accessible data. You wouldn’t be able to track down exact family trees, but I don’t think that was the intent since you’re looking for privacy. Instead you might get stuff like “you’re 40% Greek, 20% North African”

    Such a company would

    • collect a sample
    • compare the data against literature
    • delete the data

    It could also allow customers to opt in for more detailed analysis (for those that don’t care for privacy) and let them know about the risks. Or it could give an option to share anonymized health data for researchers investigating diseases / risk factors

    Edit: see the comment by Emperor@feddit.uk

    • FuglyDuck@lemmy.world
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      1 year ago

      For the record, ancestry dna is basically a scam. Especially when they give you a percentage score.

      Ask yourself what is French. Or English. How much interbreeding has happened across the spectrum? It can’t tell you who you are- there is no genetic encoding for culture.

      • Otter@lemmy.ca
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        1 year ago

        This makes sense, I don’t really know how they come up with those numbers. I feel like there is a realistic risk for harm if we DID try to classify it (ex. If you have X gene, you are Y race). It wouldn’t make any sense to begin with, and it would enable arbitrary persecution

        I’m more familiar with the inverse, where doctors can provide better care by screening for risks and generic markers that are more common for a particular demographic. That actually helps humanity and is worth studying more

        • kadu@lemmy.world
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          1 year ago

          I don’t really know how they come up with these numbers

          They sample multiple people from a given region of the world and then look at possible genetic similarities between most individuals in that sample.

          Then, they collect your genetic data and “match” to all the different signatures they’ve collected from different regions, and compute a similarity score.

          In theory, if they had sufficient samples and the genes were very characteristic, this could work. In practice, any geneticist will be able to point out multiple flaws with this methodology.

          There are indeed certain traits that only occur in specific populations… And while someone else totally unrelated could randomly have a similar mutation, it’d be unlikely. But those are rare, and absolutely not something that can be used to say “78% German”

      • Oaksey@lemmy.world
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        1 year ago

        Yeah I’ve always thought when they give those stats “how long ago?”. Where people’s ancestors lived could be quite different during different time periods, that I don’t think can be accurately represented by percentages.

        • FuglyDuck@lemmy.world
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          1 year ago

          particularly considering the way they establish them is by comparing you to modern genetics in those groups, and maybe a census of how they identified in the mailer. But our genetic pool is as clear as mud; there’s a lot of mixing going on between groups;

  • Pratai@lemmy.ca
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    1 year ago

    Nope. And everyone knew what 23 and Me was doing and did it anyway.

    • Otter@lemmy.ca
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      1 year ago

      Is there a reason one can’t exist? Like laws that prevent them from doing so?

      There’s a lot of good that can come from genetic screening (ex. medical care), it would be a shame if we’d lose all that because of a dumb law

  • HiramFromTheChi@lemmy.world
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    1 year ago

    Not to my knowledge. It’s absolutely pathetic and honestly kinda psychotic that you’re not allowed to understand your own genealogy and medical history without giving up pretty much everything about yourself. Forever.

    Because unlike a compromised password, you can’t just hop on the computer and change your genes (yet??).

    Boils down to a legislative failure.

    • Zewu@lemmy.world
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      1 year ago

      Presenting swirlies: a fun fingerprint matching platform. Send in your fingerprints and get to know your fingerprint relatives. Swirls, loops and curves - we got it all! Find new soulmates at swirlies, only 15$ per analysis and 2.99$/year to access the app and keep up to date with your fellow swirlies.

      • givesomefucks@lemmy.world
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        1 year ago

        When I was in like 5th grade we took a class trip to a police station.

        Once we got there the cops said if we were “good” he’d let us do fingerprints at the end. I was excited till I found out we didn’t get to keep the cards, the cops did and they said it was in case we get kidnapped they can find us… When a minute ago it was just a reward for being good.

        So I said I didn’t want to and the cop and teacher got super pushy and it turned into this whole big thing once parents found out every kid from my school for a couple years got tricked into giving cops their fingerprints.

        I was just mad I didn’t get to keep the card, they should’ve just had me do two and kept one.

  • ᴇᴍᴘᴇʀᴏʀ 帝@feddit.uk
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    1 year ago

    I presume you are doing this for medical information rather than genealogy as they’d need to keep your information for it to be that useful to you.

    If not, check out Family Tree DNA’s privacy policy as they seem pretty good with letting you set the level of sharing that you are comfortable with. They don’t share with third parties and you can adjust your sharing settings so law enforcement can use you for matching.

    I’ve tested myself and a number of family members with them and am happy with the level of control they give but your mileage may differ.

      • ᴇᴍᴘᴇʀᴏʀ 帝@feddit.uk
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        1 year ago

        I’m not sure of the timeline now but I seem to recall that this first came up through GEDmatch (which doesn’t do testing itself but allows people to upload results from different companies to compare them) and law enforcement had been creating data in compatible formats based on samples from cold cases. It hit the news because it helped identify the Golden State Killer. This got users nervous and they switched to you having to opt in allow that kind of matching.

        FTDNA changed it ToS to allow law enforcement to use their database for rather vaguely defined crimes but that collided with laws (especially in the EU) and privacy groups, hence the large range of options available. In the EU you have to specifically opt in to allow those kind of matches,. elsewhere you have to opt out (which seems a bit confusing to me - it should be a blanket opt in).

        • CaptObvious@literature.cafe
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          1 year ago

          You’re right, it was GEDmatch. I hope they got the right guy for the Golden State Killer and not just some dementia-ridden senior citizen that they could pin it on.

          And I completely agree that any use should require positive action to authorize. No company should be able to assume consent just because they haven’t been explicitly told “No.”

          • ᴇᴍᴘᴇʀᴏʀ 帝@feddit.uk
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            1 year ago

            Especially as FTDNA, for example, have a large array of settings, which, on one hand, is good for privacy but on the other could make it easy to miss.

            I hope they got the right guy for the Golden State Killer and not just some dementia-ridden senior citizen that they could pin it on.

            The genealogical genetic tests only let you find a pool of suspects (in this case no more than two dozen men), they’d then be able to a 100% match through standard means. He admitted guilt and pleaded guilty to a number of other crimes that weren’t explicitly linked to him. The only real concern I have about that is whether the police used the threat of the death penalty to get him to help clear a backlog of cold cases that he wasn’t responsible for.

  • VulKendov@reddthat.com
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    1 year ago

    Is there any benefit for those kinds of services. Other than just for fun, I don’t see any reason for it.

    • TheDoctorDonna@lemmy.world
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      1 year ago

      Having access to diseases that run in your family when you are adopted is a great benefit of it, and doing that at a private lab is way more expensive. And the one my sister did connected her with family members who were interested in being contacted. It’s not that there is a lack of benefit to the service, it’s that the services aren’t worth the privacy intrusion.

  • jacktherippah@lemmy.world
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    1 year ago

    Recently I listened to a Crime Junkie episode where they recommended you send your DNA in for genetic genealogy so that if a John Doe or Jane Doe turns up they can be identified and I was like lmfao no thanks why would I do that when I know they’re gonna send it everywhere, to advertisers, to law enforcement,… and I have no way of controlling it. People really don’t give a fuck about their privacy. Honestly, it boggles me.

  • Treczoks@lemmy.world
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    1 year ago

    The problem is that to be able to tell you anything about relationships or heritage, they need a certain database, and the quality of that depends on the amount of entries to compare.

    Without adding your data set to the collection, they would not gain anything to improve their database, which would de-value it in the long run.

    A service that would analyse but not retain your data would have to pay other companies to provide input, and would therefore much more expensive.

      • Treczoks@lemmy.world
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        1 year ago

        Still, those reasons apply. If you want such a service, expect to pay way more than usual. I do expect that some companies offer such a service for VIPs and Celebrities who don’t want to pop up in other peoples listings, but they probably pay for it through the nose.

      • volvoxvsmarla @lemm.ee
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        1 year ago

        Are you sure you cannot simply opt out while registering the sample? I live in Germany and I can only use these kinds of analyses for ethnicity/heritage analysis since genetic testing of risk factors as therelike are forbidden here. But I remember myheritage (which I used) asked me a lot of questions on how much data I want to share, what I want to share anonymously, what I want to share for research or keep in the database or sample storage for future analyses. I was also able to absolutely delete all data - account, sample destruction, genetic data - from every database. Comes with the obvious caveat that you cannot access any data from your initial analysis anymore but in my situation that was an ok trade off.

  • Raydogg@lemmy.world
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    1 year ago

    Seems to me the hard part is getting the customers to pay the “full” price of getting the genetic sequencing done. 23andme’s prices to get tested is rather expensive (> $130 the last time I checked) but they are also getting paid for providing some of that data for various “studies”. So they are getting paid to collect and keep the genetic data, so the consumer price of testing ($130) is subsidized by the other revenue channel (i.e. selling access to the data).

    I don’t know how much it costs to get your genes sequenced, but it’s probably more than $130 per sample.

    I see it like ads… as much as everyone wants to complain about watching ads, the alternative is to pay the full price for the service you are consuming. Most of the services we consume are - after all - profit-making companies, and even the ones that aren’t have bills that need paying.