British fertility clinics raise scientific and ethical objections over patients sending embryos’ genetic data abroad for analysis

Couples undergoing IVF in the UK are exploiting an apparent legal loophole to rank their embryos based on genetic predictions of IQ, height and health, the Guardian has learned.

The controversial screening technique, which scores embryos based on their DNA, is not permitted at UK fertility clinics and critics have raised scientific and ethical objections, saying the method is unproven. But under data protection laws, patients can – and in some cases have – demanded their embryos’ raw genetic data and sent it abroad for analysis in an effort to have smarter, healthier children.

Dr Cristina Hickman, a senior embryologist and founder of Avenues fertility clinic in London, said rapid advances in embryo screening techniques and the recent launch of several US companies offering so-called polygenic screening had left clinics facing “legal and ethical confusion”.

  • KoboldCoterie@pawb.social
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    1 day ago

    Gattaca was a great movie and definitely didn’t portray any social issues whatsoever stemming from actions like this!

      • Tollana1234567@lemmy.today
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        11 hours ago

        its like the movie arnold was in, where they were creating genetically distinct clones(give them diseases or not) basically a test tube baby based on the societal standing of the person. “the 6th day”.

    • edgemaster72@lemmy.world
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      12 hours ago

      Finally we’ve made the genetic selection machine from popular sci-fi novel, Don’t Create The Genetic Selection Machine

    • arrow74@lemmy.zip
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      23 hours ago

      Sometimes I do think it’s a shame. We as a species could end genetic disease within 1 generation. We could have a smart, stronger, kinder, and ultimately healthier humanity.

      But we aren’t ready for it. Any attempt would be forced. Any attempt would get tainted immediately by racism, religion, nationalism, etc.

      Sometimes it makes me sad to think of the potential of technology and how we’ll likely never be able to use it ethically or responsibly

      • yes_this_time@lemmy.world
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        23 hours ago

        There is a strong possibility we would also get it wrong. Diversity is a strength. Who knows what tomorrow brings.

        • masterspace@lemmy.ca
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          23 hours ago

          This is asinine. Diversity is a strength, that doesn’t mean that horrific genetic diseases that cause enormous pain and suffering are.

          • yes_this_time@lemmy.world
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            21 hours ago

            Eh, don’t be rude. You are likely thinking of single gene mutations or other clear well defined problems.

            My mind was more on polygenic diseases or genes with variable expressiveness. Where humans being humans we target things where we don’t completely understand the outcomes.

            We screen for chromosomal abnormalities I don’t have a problem with that for example.

            • masterspace@lemmy.ca
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              21 hours ago

              Yes, congratulations. Can you name a benefit of having the BRCA mutation?

              If you had it, and you gave it to your daughter, how would you tell them that they have cancer because you thought the idea of using IVF to select against it was icky?

        • arrow74@lemmy.zip
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          19 hours ago

          I get where you’re coming from, but the percentage of our genome needing to change to greatly improve the species is less than you’d think

      • masterspace@lemmy.ca
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        23 hours ago

        It’s already starting to happen and it’s not this crazy mass casualty event you make it out to be.

        People regularly do IVF and screen out embryos that have inherited horrific genetic diseases, or say, genes that they know make highly susceptible to cancer.

        It doesn’t mean it will inherently lead to a slippery slope. This article is literally about how the UK needs to update its laws to prevent people from getting IVF done there but getting the genetic analysis done elsewhere and then ranking their options based on that to avoid the UKs current laws that would prevent a UK clinic from ranking them like that.

        • arrow74@lemmy.zip
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          19 hours ago

          You misunderstand, to have an impact species wide it would be a “mass casuality” event. What’s being done with IVF is too insignificant to the entire gene pool to cure us of genetic based disease or any of the other positives

  • Artisian@lemmy.world
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    1 day ago

    Yes, let’s have this discussion.

    Personally, I think screening for disease is a win. Give that service by default. Though we need this happening where somebody can check the data (grift would be very bad in this space).

    • KoboldCoterie@pawb.social
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      1 day ago

      I know ‘slippery slope’ is a logical fallacy, but I think it’s applicable here.

      We scan for disease, easy sell. But since we’re doing it anyway, let’s also include physical defects. Why not also include autism? I mean we have the data already, and these parents are paying for the service, why shouldn’t we give them that information? And if we’re doing all of that, why not also give them data on life expectancy and intelligence? Maybe physical traits - after all, they’d really prefer a blond haired, blue eyed child.

      • Artisian@lemmy.world
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        1 day ago

        I mean, we already scan for down syndrome and the like. I don’t think we’re locked onto this slippery slope just from that.

        I agree incentives are strong to go down the slope if we make parents pay for this data. But that’s a choice we make: let’s include disease screening as part of baseline healthcare, but make people pay (or otherwise regulate) if they want the additional data to screen for more precise things.

        The discussion of what’s disease will (remain) contentious. But I don’t think it has to be slippery if we are careful about the incentives. Society at large seems capable of valuing diversity.

        • KoboldCoterie@pawb.social
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          1 day ago

          but make people pay […] if they want the additional data to screen for more precise things.

          Isn’t that just worse than giving the data to everyone, though? The more expensive you make it, the more of an exclusively ‘rich people’ service it becomes. As if kids with rich parents don’t already have enough advantages in life, let’s make sure they’re physically peak, too?

          • captainlezbian@lemmy.world
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            19 hours ago

            Yeah I’m far more on board with specific information being available to everyone and nothing more. Possibly also a “high risk, low occurrence” list of things like BRACA for people who have a family history of a high consequence disease causing mutation.

            And I think disabled voices need prioritized in the discussion of what genes are included. As someone with genetic health issues, I don’t trust those without them to make such decisions, especially after seeing how hearing parents of deaf children behave.

          • Artisian@lemmy.world
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            1 day ago

            I mentioned regulation in that sentence and you '…'ed it out… Clearly I’m ok with putting in guard rails, and I see no practical barriers to doing so. Feels a little bad faith to ignore the counter argument that’s right there.

            (Severe edit cause I confused the conversation)

            • KoboldCoterie@pawb.social
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              1 day ago

              You said ‘or otherwise regulate’, not ‘and regulate’, so I logically assumed you were making two independent proposals and chose to respond to one of them, omitting the other for clarity.

              I don’t even think it’s a counter-argument, really. As soon as prosperity becomes a factor, it’s a “rich people only” feature, regardless of what other guardrails are in place.

              • Artisian@lemmy.world
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                1 day ago

                Most (all?) healthcare has been rich people only before it became broadly available. Usually we don’t accept that as a reason to ban it though; what’s so different here?

                • Zombie@feddit.uk
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                  23 hours ago

                  Not in the UK, which this thread is about.

                  The NHS provides healthcare free at the point of service, for all.

                  Not everywhere is the United States of Fascist America.

                • KoboldCoterie@pawb.social
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                  24 hours ago

                  Eugenics aren’t suddenly okay if they’re only accessible to some people. Healthcare on the other hand should be available to everyone but it’s still a net positive even if it isn’t available to everyone.

        • Rhaedas@fedia.io
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          1 day ago

          That has its own slope of discrimination from data due to being able to pay or not. If we determine a certain thing is okay ethically to screen for, anyone should be able to get it. Bad enough to have one gray area, we don’t need a gradient of gray everywhere.

          • Artisian@lemmy.world
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            1 day ago

            Seems fine to me; both show that the slippery slope really isn’t inevitable, no?

    • Donkter@lemmy.world
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      1 day ago

      Like with many many things in our world. This is fantastic! >!just as long as it’s available for everyone and not here to make the rich richer.!<

  • Evil_Shrubbery@lemmy.zip
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    But under data protection laws, patients can – and in some cases have – demanded their embryos’ raw genetic data and sent it abroad for analysis in an effort to have smarter, healthier children.

    One US company, Herasight, which charges couples $50,000 (£37,000) to assess an unlimited number of embryos, confirmed that it had already worked with couples undergoing IVF at clinics in the UK.

    They should have just given the data to some online AI and ask it directly which one should live. That’s what that company prob did anyways.

    /s

  • supersquirrel@sopuli.xyz
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    23 hours ago

    Eeew how could you make this choice as a parent and not feel like an ingrown creep who wants a video game character creation tool where you can amuse yourself by crafting an object just as you like it instead of seeing a child as the gift of a living, breathing, unpredictable, utterly unique and esoteric human you have the privilege of witnessing endlessly surprise you?

    This kind of attitude is ALREADY the source of countless children suffering from the selfish reductiveness of their parents’ gaze, I dread that science is further enabling it.

    • captainlezbian@lemmy.world
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      21 hours ago

      They think of it as just giving their kid the best chances in life. They really need to listen to people like Vivian Wilson talk about what it’s like to not live up to selected for traits in IVF.

      • supersquirrel@sopuli.xyz
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        19 hours ago

        We cannot ignore the fact that once the capacity for choice is introduced something essential is changed. I don’t think there is an easy place to draw the line, I expect it is only degrees of gray past a certain point with preventing poor quality of life/debilitating disabilities but on the other hand it is very clear to me that there are very very very BAD places to draw the line and I absolutely do not trust the structures of society nor the choices of individuals not to violate basic human decency here. I am not an extremist on this, what I am is very worried about how I see a desire in people to choose their children in a way that would never be healthy even if they could.

        • EndlessNightmare@reddthat.com
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          10 hours ago

          What really gets ugly is that I could see this becoming a genetic arms race among nations. Sure, some nations can choose not to do it, but others will choose to proceed. This is why, as many downsides as AI has and despite all the groaning, we (as a society) can’t really just opt out and halt development because our adversaries won’t.

          The fact that something can be done means that someone will do it if it conveys a competitive advantage.

          This is a dark road to head down.