[HN Gopher] Documentary spurs a new look at the case of the firs...
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Documentary spurs a new look at the case of the first gene-edited
babies
Author : Brajeshwar
Score : 49 points
Date : 2023-02-22 15:28 UTC (1 days ago)
(HTM) web link (theconversation.com)
(TXT) w3m dump (theconversation.com)
| RobotToaster wrote:
| Why should we allow self appointed "biomedical ethicists" to
| dictate what interventions we can use?
|
| If someone says they should have the right to refuse a
| intervention, even if those "ethicists" otherwise approve of it,
| those ethicists give a smug nod of approval.
|
| But if someone says they should have the right to use an
| intervention that those self appointed "ethicists" don't approve
| of, they will stamp their feet like toddlers and use every force
| of the state available to try and stop you.
|
| If we allow parents to destroy embryos, why is it so
| controversial to allow them to modify them?
| roywiggins wrote:
| To your last question, destroyed embryos can't suffer. Neither
| can genetically modified embryos that are destroyed or never
| get implanted. That's a pretty big difference!
|
| How would you feel about performing untested gene therapies on
| healthy babies?
| steve76 wrote:
| [dead]
| Analemma_ wrote:
| I dislike biomedical ethicists as much as most people here, but
| the anger here seems way out of proportion to their actual
| influence. They don't "dictate" anything; for the most part
| they're a bunch of noisy busybodies who make statements which
| get quoted by journalists but otherwise influence nothing. For
| the most part, market demand dictates interventions and
| bioethicists are essentially an irrelevant speed bump in this
| process. If you don't like them, you can just ignore them.
| lo_zamoyski wrote:
| Your criticism is difficult to follow. There's a big difference
| between refusing an intervention and making use of one. I can
| licitly refuse treatment for a disease (the distinction between
| ordinary and extraordinary care), but I cannot licitly make use
| of immoral means to treat a disease.
|
| > If we allow parents to destroy embryos, why is it so
| controversial to allow them to modify them?
|
| Genetic modification _as such_ , in the abstract, when
| therapeutic (fixing some genetic defect that causes a disease)
| may be licit _in principle_ , but in practice,
|
| 1. our ignorance of genetics and non-trivial hereditary effects
| suggests we should be cautious, not only for the sake of the
| person whose genes are being edited, but because the change is
| not localized; that modification may not be transmitted to
| descendants
|
| 2. that embryos are subjects of modification introduces the
| standard moral problems of IVF (such as the objectification of
| human beings).
|
| If modification is not therapeutic, then the usual moral
| problems surrounding designer babies apply in addition to those
| that apply to IVF. Killing embryonic human beings is
| intrinsically worse, though the secondary genetic risks are
| obviously absent.
| dekhn wrote:
| At least one point of those ethicists is to stop people who are
| naive from doing things with permanent consequences without
| first checking to see what those consequences would be.
|
| I would say that in the area of reproductive science, you need
| to be exceptionally cautious about what's permitted as you are
| permanently modifying the germline, and society has very strong
| opinions about that. At this stage of the science you're more
| likely to cause harm than cure disease (except in a limited
| number of Mendelian diseases) while also baking that harm into
| a person's genome so that if they do survive, their children
| may also inherit that.
|
| (I worked towards germline modification for several decades and
| concluded, well before He Jianku shat the bed, that we're not
| ready to do it, and there do need to be some guardrails
| preventing rogue scientists finding naive parents and getting
| them to sign inadequate consent forms).
| password11 wrote:
| > _At least one point of those ethicists is to stop people
| who are naive from doing things with permanent consequences
| without first checking to see what those consequences would
| be._
|
| Are the consequences really that permanent? It's pretty easy
| (in China) to monitor a handful of test subjects with
| heritable mutations and make sure they don't reproduce.
|
| > _At this stage of the science you 're more likely to cause
| harm than cure disease_
|
| The potential upside of developing the science is huge, which
| is essentially what He is doing.
| kevviiinn wrote:
| How, exactly, would you ensure they don't reproduce?
| quickthrowman wrote:
| Forced sterilization is the only option.
|
| Forced sterilization only ceased in the United States in
| 1981, I'm sure the CCP has enough authoritarian power to
| forcibly sterilize genetically altered humans if they
| chose to do so.
|
| I disagree with forced sterilization, just to be clear.
| kevviiinn wrote:
| Are there cases of that happening? Besides the known ones
| in the US I mean, I'm talking about China
| Xeoncross wrote:
| yeah, forced sterilization was common in China with their
| one-child policy that was only recently rescinded. There
| are plenty of stories and even documentaries on it.
| dekhn wrote:
| The Nazis did it to disabled people (https://en.wikipedia
| .org/wiki/Law_for_the_Prevention_of_Here...) and there
| are more countries listed in
| https://en.wikipedia.org/wiki/Compulsory_sterilization
| quickthrowman wrote:
| Yeah, against the Uyghur population in Xinjiang:
| https://apnews.com/article/ap-top-news-international-
| news-we...
|
| I'm not sure if there are any cases against Han Chinese
| people, probably the one child policy was effective
| enough.
| password11 wrote:
| I also disagree with forced sterilization, to be clear.
|
| Sterilization _in exchange_ for curing a genetic disease
| could be a pretty good deal depending on the disease.
| Given the primary concern from ethicists is the
| heritability of genetic treatments.
|
| There's an argument in _The Selfish Gene_ that I think is
| relevant here. People are mistaken to be personally
| concerned with the inheritance of their genes in the next
| generation as some evolutionary "duty". People are
| conscious entities manifested by the genes, but the genes
| themselves are what have the incentive to reproduce and
| they pull your "strings" to get you to behave that way.
| So if you can trick them via adoption, DINK lifestyle,
| etc. there's no loss from your perspective.
|
| It's not like your body genetically validates the genome
| of your children; there's many stories of men happily
| going their whole lives not realizing their "son" was
| fathered by another man, e.g., acceptance of the
| (bastard) child was famously portrayed in _King of the
| Hill_.
|
| Again, disagree with forced sterilization as a matter of
| principle.
| dudeofea wrote:
| man-made horrors beyond your comprehension, that's how.
| roywiggins wrote:
| It's pretty permanent to the resulting children.
| dekhn wrote:
| Yes, these consequences are permanent. What He did was
| permanently modify the cells that make up a tiny embryo.
| The germline cells- those that go on to make sperm and eggs
| in the developing person- are thus permanently modified,
| causing those changes to be passed on to the children.
|
| Note that the specific change he made was intended to make
| these subjects more robust to resisting HIV infection. HIV
| infection in China is extremely rare, so it's an odd choice
| to pick- most doctors would instead focus on a well-
| understood, testable condition that is caused by a
| mendelian gene change. And, He's change likely didn't
| really have the outcome he predicted (common problem with
| genetics- the mutation you make almost never has the
| phenotype you desire). So there was a lack of need for this
| risky work and it also wasn't the right work. And, those
| changes will be passed on to the children of the affected
| children.
|
| Now, I need to point out if your attitude is that these are
| "test subjects", and that you are going to keep them from
| reproducing, I can assure you that politicians, lawyers,
| doctors, scientists, and parents are going to stop talking
| to you and you're not going to be able to make a career out
| of this. This is an area that is closely tied to people's
| strongest beliefs and a single misstep (He made multiple
| missteps) can ensure you never work in this field again. m
| Learnign to speak the jargon so that people think you're a
| well intentioned doctor, not Doctor Frankenstein, is
| absolutely critical to being able to work in this field.
| magospietato wrote:
| > It's pretty easy (in China) to monitor a handful of test
| subjects with heritable mutations and make sure they don't
| reproduce.
|
| Feels like we've proved the importance of ethicists in
| genetic medicine in two replies here.
| Xeoncross wrote:
| Sorry Person275, you were approved as a test subject so
| you are bared from partaking in life.
|
| But don't worry, they haven't had success passing laws
| legalizing your organ harvesting so you'll probably get
| to live a full life even after we're done testing you.
| [deleted]
| codeddesign wrote:
| [flagged]
| klodolph wrote:
| No. There are lots of interventions available for possible
| gender dysphoria, and we have some nice options available
| like puberty blockers which are relatively safe.
|
| If you change your mind, you can stop taking the puberty
| blockers. This is easy. You can make a _reversible_
| decision first and take whatever time you need to make the
| _less reversible_ decisions later, or never.
|
| That's not how gene editing works--once you edit genes, it
| is hard to un-edit them.
| causi wrote:
| _Why should we allow self appointed "biomedical ethicists" to
| dictate what interventions we can use?_
|
| The medical industry seems to be largely divided into two
| camps: Camp A would happily sell allergy medication that
| triples your risk of diabetes, and Camp B would rather ten
| thousand terminal patients die in agony than kill a hundred of
| them with medication that cured the rest.
|
| It's simply the momentum of the world we live in. It's
| perfectly legal for a 45 year old woman to get pregnant by an
| elderly man, then chainsmoke, take caffeine pills, and get
| shitfaced every day of her pregnancy and create a profoundly
| disadvantaged baby whose life will be full of hardship. They
| can even do it on purpose if they want. The powers-that-be
| don't give a damn about human happiness or suffering; they just
| want to make sure it isn't _them_ who gets blamed.
| ska wrote:
| This is a wildly inaccurate take.
|
| There probably exist examples of both the extremes you
| describe, but in such small numbers as to probably be
| irrelevant. On the whole the industry is conservative but
| changes fairly quickly.
| depereo wrote:
| I would suggest that 'the medical world' has _fringes_ like
| that you describe but that the overwhelming, vast majority
| would take a significantly more nuanced view.
|
| Honestly even that description is massively underselling how
| much more comprehensive the ethical views of 100% of the
| medical profession has here. The fringes like that are a tiny
| rounding error.
| dqpb wrote:
| If it's possible to greatly improve our species via gene editing,
| then it's grossly unethical to stand in the way if that progress.
|
| Convince me I'm wrong.
| giraffe_lady wrote:
| "Progress" is something that emerges only in hindsight, and is
| a value judgement that embeds a perspective from which it is
| made. What we have in the present are choices, and
| possibilities, and estimations of their outcomes.
|
| You could oppose this because you think it's unlikely to work
| at all, and so is a dead end and wasted effort. You could
| oppose it because you think it will work, but that the changes
| are not likely to be improvements.
|
| Is a procedure that creates a new form of smarter, healthier,
| longer lived human progress? For them it certainly is. If they
| deny me that technology for my descendants, is it progress for
| them?
|
| It is simply not going to break down so easily into "this is
| progress and progress is good." It will have consequences, some
| of them negative, many of them unexpected. It will be better
| for some people some of the time and worse for some people some
| of the time, like almost all changes are. Resisting change
| simply to slow it down and better understand and predict the
| effects is a valid stance as well. None of these things are
| inherently unethical.
| roywiggins wrote:
| Would you volunteer your child for experimental gene therapy to
| make them HIV resistant, a therapy that has never been proven
| to work and has an unknown risk of permanent side effects?
| zug_zug wrote:
| Sounds like pearl-clutching to me. The outrage is not over the
| ethics of what he did, which is a scant drop in the bucket
| compared to real-world concerns (e.g. Ughyrs). To claim the
| parental waiver being insufficient was the heart of the issue is
| disingenuous.
|
| Still, nice to remind us the technology is here, would love to
| hear how the kid is doing.
| JackFr wrote:
| > The outrage is not over the ethics of what he did, which is a
| scant drop in the bucket compared to real-world concerns (e.g.
| Ughyrs)
|
| Because someone is not outraged by what you are is not evidence
| of disingenuousness.
| whatshisface wrote:
| The technology is definitely not here. Most attempts will
| result in the introduction of unpredictable mutations.
| RobotToaster wrote:
| There's no guarantee those mutations will be pathogenic
| though, most aren't.
| whatshisface wrote:
| The probability of a mutation being deleterious is so much
| higher than that of it being helpful that mutations are
| bad.
| altruios wrote:
| ...Mutations?
|
| You mean advantages, surly?
|
| /s
| PragmaticPulp wrote:
| > To claim the parental waiver being insufficient was the heart
| of the issue is disingenuous.
|
| The article doesn't claim that was the heart of the issue. It
| lists that as one of a multitude of issues.
| SoftAnnaLee wrote:
| The ethical concerns were not just the parental waiver; but
| rather a number of issues. Such as implicit coercion (i.e.
| forcing subjects to pay exorbitant fines for backing out of the
| research; seeking out patients who may have no other options
| for IVF than this trial), inadequate communication of the risks
| that Gene Editing may have, and improper communication of the
| actual predicted effect of the trial (i.e. "your baby will be
| immune to HIV", rather than having a potential increased
| resistance to HIV).
|
| As for the ethics of gene editing itself, the risks of gene
| editing are poorly understood. Not in that we are ignorant of
| the risks, but rather that science does not have an
| understanding of what techniques of gene editing are effective.
| What therapies are effective. What therapies have side-effects,
| the intensity and fatalities of these side-effects.
|
| It would be one thing if the dimensions to these risks could be
| ballparked (e.g. with how HRT for gender affirmation, the risks
| of therapy vs abstinence are decently understood and
| communicated to a patient before starting due to the current
| understanding of the human endocrine system, and the track
| record of patients in the past). But since the current answers
| to these questions range from theoretical to mostly unknown, it
| is difficult to properly convey the risk. And caveat emptor is
| an irresponsible perspective to have of the risk, as one can
| not truly consent to a complete unknown; especially on the
| fetus and future person who has not yet been conceived.
|
| That said, I am in the opinion that in the case a person who
| understands the risk of _no_ therapy is severe (i.e. a patient
| with a severely debilitating or fatal disorder or disease) or
| has a proper understanding of the lack of knowledge and risk of
| therapy (e.g. a geneticist who reads journals about these
| particular issues) then one can adequately consent. But the
| parents in this experiment were neither.
| [deleted]
| lo_zamoyski wrote:
| > a scant drop in the bucket compared to real-world concerns
|
| Objectifying human beings in such a radical way and arrogantly
| putting the human germline at risk isn't a real-world concern?
| You have a very strange grasp of real-world concerns.
| j16sdiz wrote:
| CRISPR CAS9 is not precise and bring lots of unexpected
| mutations. That's why currently it is only used for disease
| that have no other cure.
| tabtab wrote:
| Rich people _will_ find a way to use and experiment with this.
| They 'll do it on a private island if they have to.
|
| Then dictators will be tempted to "build" better workers and
| soldiers to get an edge on "those pesky democracies". If they
| succeed and become a threat to other nations, those nations will
| feel obligated to follow suit. _The cat 's out of the bag_. (I'll
| pre-order a second wanker.)
|
| If nukes don't get you, AI will. If AI doesn't get you,
| genetically modified monsters will. If genetically modified
| monsters[1] don't get you, then rioters paranoid over the first 3
| will get you. Enjoy every day like it's your last.
|
| [1] Could be altered humans, altered viruses, altered bears,
| altered mash-ups of all 3, etc.
| goethes_kind wrote:
| Rich people (and not only them) already do much more than this.
| We all select the best mates we can get our hands on.
|
| The gain from this kind of gene editing is likely much smaller
| than simply having a bunch of kids with a very genetically fit
| individual, and that is exactly what rich people do.
|
| I also recall reading that some countries had strategies to
| foster interaction between very genetically fit individuals,
| beyond what would naturally happen by the general tendency of
| people to be attracted to others like them.
| atleastoptimal wrote:
| The funny thing is is that the AI singularity will likely come
| before the gene editing singularity, nullifying the advantage of
| being able to genetically engineer super smart babies on account
| of the de-facto dominant species on the planet becoming the
| collective cloud hyperintelligence
| ur-whale wrote:
| https://archive.is/Z8bsj
| manv1 wrote:
| Ethics is a funny thing.
|
| Why do the ethical concerns of gene editing matter, ethically,
| when there are billions of people starving?
|
| Instead of spending time and money on ethics of a few, why not
| spend that time and money on helping others who actually would
| love to have the opportunity to make an ethical choice by
| surviving?
|
| I mean seriously, bioethics is just a way for the upper-middle
| classes to feel better about their choices. But in real life the
| rich don't really care about that sort of shit; ethics really is
| a way for the rich to deny the almost rich the same privileges
| and opportunities.
| Animats wrote:
| We let people with known genetic defects breed. This is unlikely
| to be worse than that.
| tabtab wrote:
| And idiots.
| roywiggins wrote:
| This article really brought out the Buck v Bell supporters.
|
| https://education.blogs.archives.gov/2017/05/02/buck-v-bell/
| kevviiinn wrote:
| Like people who don't understand that creating new genetic
| diseases might be worse than the ones that we already have?
| That they might cause even more complex issues that we can't
| foresee?
| bglazer wrote:
| I don't think this is an area in which pure first principles
| reasoning leads to good outcomes.
|
| People are resistant to _any_ sort of genetic restrictions on
| procreation for a couple reasons. First, the historical
| precedent of eugenics is so monstrously abusive that any step
| in that direction is viewed as dangerous. Second, how would you
| enforce a ban on procreation of people with genetic defects?
| Put the parents in jail? Forcefully abort the fetus? What if
| they don't know about their genetic condition?
|
| With genetic engineering, it's a bit more clear. It's much
| easier to just not start doing germline editing than to roll
| back the (unknown) consequences. The harm in not doing that is
| of course that some people get sick and die, but we can
| mitigate that with normal medicine. Also the particularities of
| the case matter here. The scientist chose a questionably
| effective approach to preventing HIV, a disease that has good
| treatments. Also he did a shit job informing the parents about
| the risks. Just bad choices all around.
|
| Doing secret, shady genetic engineering on children is not the
| same thing as letting people with genetic conditions have
| children.
| at_a_remove wrote:
| Speaking of reasoning ...
|
| "we can mitigate that with normal medicine" -- _for some
| illnesses_. For many, it 's an abbreviated lifetime,
| curtailed options, and some measure of ongoing suffering.
|
| I don't really care about historical precedents. They can
| best be used as a measure of how not to do something, rather
| than a suggestion that it not be done at all.
|
| Germline editing has the chance to relieve the suffering of
| real people. My entire life would likely to be quite
| different and much better, were it available back then. And
| yet a lot of people are just ... counted as part of the cost.
| Sorry you will die soon, and painfully, but at least we're
| not the Nazis.
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