Eugenics | Sci Guys Podcast #32
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- čas přidán 23. 11. 2019
- If you had the chance to change your child’s genes, would you? Is that Eugenics?
Those are the questions we debate today! Gene editing has come to the point that we can choose almost any feature we like for our unborn children. As usual, science has run far ahead leaving important ethical questions behind. Jurassic Park have been onto something...
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REFERENCES
1. pged.org/history-eugenics-and...
2. www.nature.com/scitable/forum...
3. www.history.com/topics/german...
4. www.ncbi.nlm.nih.gov/pmc/arti...
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@notcorry / @jampkin / @lukecutforth - Zábava
I think it's not hearing people's place to say on what happens to deaf people. Being deaf isn't a bad thing, it does make life harder, but it's an important part of people. As an autistic person, I hear all the time how people want to eradicate and stop autism and it hurts so much because people are saying they don't value my life as a human being and are telling me basically I'm bad because I'm austistic. Eradicating deaf people or austistic people or those with downs syndrome is eugenics
Edit: autocorrect changed deaf to death, my apologies!
absolutely, elijah. autism speaks is a hate group! the autistic community is not something that needs to be weeded out... we'd lose so much beauty in our lives if we did that. Especially since autism is so very underdiagnosed, particularly in people good at masking and people assigned female at birth, that would be a huuuuge portion of the world, probably especially the "alternative" or "nerdy" communities like the arts, STEM, and academia... you're an incredibly valuable member of society and i hope you never forget it, friend :)
@@pigeonshit440 to me it just makes that person unique my goddaughter is autistic but I’ve always told her she can be or do anything she sets her mind to . I say focus on abilities not disabilities something I’ve always done when it comes to her ever since her diagnosis at age two . She is at a mainstream school with her sister and is doing really well .
Another dangerous 'side-effect' of CRISPR is that it widens the gap between the rich and the poor. Rich people will be able to use CRISPR to make babies that will ultimately have an easier life in society. They will get wellpaying jobs easier and will therefore get richer and richer. Poor people will not be able to do that. I am not saying that poor people will be 'faulty' or 'useless' or anything. I am just saying that these are consequences that we need to think about when science like this starts to develop.
As a legally blind person the things Corry was saying about how deaf people might not want to get their sense of hearing back because they’ve grown up like that and found that community very much applies to me - I don’t need to see properly and If there was some operation or something that could fix my eyes I wouldn’t take it at all
I do see the point of the positive side of eradicating disabilities, but I think the world should be focused on studying how to make it more accessible rather than on fixing things like that
Also yeah I know that they discussed that, I just wanted to add that my stance would be focusing on world accessibility!
I don't think I'm legally blind, but I need glasses to see farther than 40ft with clarity. I'm actually looking into laser eye surgery. I have a strong and inherent problem with needing the world to "make it more accessible". I don't like being dependant on someone else's moral compass and I don't want to face a life-threatening situation with a disadvantage. The fact that I needed to have bought an item made by someone else, then have that item on me just to see if the person walking towards me has a knife in their hands....I don't like it. I don't like that I'm dependant on a tiny breakable thing just to drive safely. Now...if CRISPR could safely improve my eyesight...I'd sign up for it. assuming its not painful. I'm not about to turn into a SAW extra.
On the deafness convo: the problem with eugenics is much deeper than the negative eugenics issues that ppl like the nazis used. Getting rid of deaf people is eugenics, even if it brings no real harm to any living deaf people. As somebody with a physical disability and a sibling who is autistic (and pls know that many people want to figure out the genetic cause of autism specifically so they can use prenatal tests to stop autistic ppl from being born) this is eugenics plain and simple. Trust the people who's existence is in danger when things like this starts happening. Please
yes fellow disabled person here its 10000% eugenics and shouldnt be happening
Yeah any kind of eugenics is absolutely messed up
"I like you, you're reliable in an unreliable sort of way" 😂
On the deafness convo:
I’m disabled. We should make the world more accessible. We shouldn’t have to change the person to fit the idea of ‘the ideal person’ if it’s not a threat to their life. It’s ableism. Just because we don’t fit the ‘norm’ in society, we should change?
Yeah definitely, I think diverse ways of experiencing life is crucial for innovation. For example a street runner would see a building in a different way to an architect and would experience different problems with the building.
Should we ban hearing aids though? If CRISPR is carried out, the child can choose whether or not they want to be deaf when they’re older. If not, they don’t have any choice in the matter. It isn’t life threatening to be paralysed from the waist down either, so should we stop looking for a cure?
@@Sietruc obviously we should continue looking for cures and what not but when it comes to disabilities (not disease or sickness) it is up to the individual to decide weather they want treatment or not. Alot of the time it is hard for fully abled people to understand why a disabled person to not want a cure. But of course we should continue looking for cures.
@@Sietruc I think you misunderstood me, i do think cures are vital to invest in but their is also value in diversity of experience in innovation.
@@Sietruc I mean, there are a lot of deaf people who deliberately do not wear hearing aids (besides the fact that hearing aids don't really make people able to hear, not really, it's not really a great fix).
They can communicate with sign language, the same as any language, so they won't be able to communicate with those who don't understand sign language, but that goes for anyone who speaks a different language.
I'm not deaf and don't have any other physical disabilities, but as an autistic person and whose best friend is autistic and has ADHD, I definitely consider changing disabled people's genes eugenics. It relies on the idea that disabilities are inherently defects, when in reality most non-life threatening disabilities are only disabilities in an inaccessible neurotypical society.
My autism, for example, isn't an inherent defect. It's just a way of existing. It's only a disability because the world right now isn't built for people like me.
You can tell I have ADHD because I am watching this one year later and will still comment here. I do see my ADHD as more than a social disability, I feel like it hinders me in many ways and I would choose not to have it if I could, BUT I very much agree with Luke's points - my ADHD was also what shaped my experiences growing up, and if you argue for genetic modification you need to be honest about what that means, and that you would be 100% choosing one potential life over another one. Make a choice and live with it, but do not lie to yourself arguing that it is nothing like that and that it was an innocuous choice.
If a world isn’t built for a person with X, and altering those X genes will not wipe out the population of X people, altering X genes to ensure that person can grow up without extreme difficulty (from the world that isn’t built for their original genetic makeup) is just being a decent parent.
@@ghostbunny792 Now swap in race for X and you see how messed up your argument becomes. Whenever people in power try to determine what constitutes "fitness" and what doesn't, those judgments are almost always based on normativity, profitability, and the majority, and not on any objective assessment of survival or adaptation. Traits that humans consider desirable, like in animal agriculture, would be downright detrimental if those animals were set free in the wilderness. Traits that are beneficial under one set of environmental conditions can be harmful in a different set of environmental conditions. Very rarely is there even a single gene that codes for a single trait, and the same sets of genes often have multiple functions, so you can't alter one trait without affecting others.
In other words, you have no business telling people with disabilities that they ought to have their genes altered to function under the demands of society. It's society that needs to change, not the people you think have undesirable traits. In case you haven't noticed, society has multiple systemic problems, especially in the way it treats minorities. Eugenics does not work, and advocating for it is being a fascist, not a decent parent.
Auto captions are fantastic in literally the first 5 seconds. “if you want to, do you want to hear an email?”=“if you want to chill here Nemo” 😂
This is giving me flashbacks to watching GATTACA in high school bio and the discussion we had about CRISPR allowing for "designer children"
Luke was on point this episode.
the difference between hearing aids and manipulating someone's genes is the scopes in which each have potential to effect. If you buy a hearing aid and don't like it, you can get a new one or swear off the whole thing and your kids never need to worry about it. However altering a person's genetics effects their whole life (no refunds) and may have bearing on their decision to reproduce. I love these podcasts, guys. Great stuff.
disagree with corry that parents should be able to choose whether to give their child a "better" or "easier" life, the argument for me always comes back to "where is the line?" if we start editing genes for non life threatening conditions it will only progress from there into something that will most likely become horrific
I do see that issue - especially if genes become favoured for 'intelligence' or 'cosmetics'. This would not be as much of an issue if CRISPR was available to every pregnant parent - but because it would cost money, those in lower classes will become more and more disadvantaged. Also, I worry that infrastructure (designed for the people who pay for it) will no longer support them.
You mean the problem comes from it going wrong or from the social issues it can cause? If it's not from it going wrong, how is it different from nowadays medicine? I mean, there is a barrier between rich and poor people in the sense that richer people will have better healthcare. It would be one step further, of course, but haven't we already done some similar things?
Being deaf can be pretty life-threatening, especially if you have to depend on other people to take care of you. Is the building on fire and the alarm is on? Better hope you're in a place you can see people running or someone remembers you can't hear and puts their own life in jeopardy to save you. You don't get super senses just because you lose one of them.
@@affadoodletigressjointacco932 In case you or someone else is interested, the movie Gattaca is set in a dystopian future where what you described has happened.
Where to draw the line is the key question, I really don't envy the ethics committees...
@@epiccthulu Or, radical idea, we make sure things like alarms also feature lights for people who can't hear them. Make the world fit for the person, rather than the other way around.
Really interesting! Just to clarify, there is not currently an option for changing the fetus's genes to not be affected by CF. In terms of CF screening, currently it can be done pre pregnancy with partner carrier screening and also can be done during pregnancy as chorionic villus sampling (CVS) or amniocentesis. There is also the emergence of non invasive pre-natal screening using blood tests in the mother.
However you can screen IVF embryos and then the embryos without the CF allele are used. This is called pre-inplantation genetic diagnosis. Gene editing is used as a therapy for patients with CF but not yet in vivo with a fetus that has the CF allele.
The lobotomy also ties in very strongly with this. There were lots of ways that families could use insanity to hurt their family members, particularly women who were trying to get Equal rights
it's eugenics because it's presuming what kind of genes would be easier to pass on without allowing the genes a chance. The genes that CRISPR would be altering would have already been effectively passed down from the parents but then prevented from going further based on the single choice of a person. genes for deafness that hearing aids are effective on will still get passed on because hearing aids don't effect your genes.
Im disabled and Native American, I know the pain of eugenics, and I am serious when I say that CRISPR will result in immense pain for so many communities. A parent can make that choice, but that choice multiplied by millions of parents guarantees the death of identities and cultures deemed 'less manageable' by those parents. People are getting to philosophical about this, the pain this will cause is very real and i mourn for a world without this technology.
the contact between the old and new worlds was inevitable, and because of that people tend to think it was an overall good thing. I wouldn't exist if the contact had been different, had been more kind to people who did not consider the new world to be new. But now the culture of my family doesn't exist, stories passed down through thousands of years have been permanently lost in a few hundred year, entire languages gone extinct. I like that I exist, but I do not think what happened that allowed for my existence was anything other than terrible. I think of CRISPR the same way I imagine the unfamiliar sails of a tired Spanish ship creeping into my family's rich fishing-ground.
For the first section: There is genetic deafness, deafness caused by something after birth, later in life, accidents, and a bunch of different types. Even if genetic deafness was removed from the possibilities there would still be deaf people and deaf culture would still exist, it just would allow for parents who are unable to raise a deaf child to still have children.
For the rest: Colonialism and the literal eradication of cultures and communities is different from changing a gene so a child can hear. CRISPR isn’t trying to make hearing aids illegal and shut down deaf communities, it literally just makes sure parents don’t resent their child for being deaf and making them change their entire lives, abort the fetus, kill or abandon the child, instead it allows the child to have more opportunities and makes life easier for the entire family.
It's definitely not November 2019 now (ah, ignorant times), but I work for a toy company in on the east coast of the US and we just launched our nurture diversity and inclusion series that features down syndrome dolls. One is a caucasian male and other is a dark skinned female. A large portion of these purchased will be going to daycare centers and preschools, which means more and more children at a younger age will be introduced to this group of people. I think advances in this way, and how many countries reacted to Iceland's actions to reduce their down syndrome population, will keep this sort of selective choice at bay at least until I'm dead.
Hi!
I was in hospitals for many years of My childhood, I saw many people with mental and physical disabilities. Some of them could not breathe on Their own since birth, died couple of years later (probably). There is another(two) disorder I saw and still remember, epilepsy(probably from genetic cause) where a kid got a seizure that left nothing, but a brain-dead human behind with very very sad parent(s), and another one where sodium ions accumulate in and around the brain-cells, slowly killing them and the person with it causing a twitching and twisting (often called snakeing) motion. In My opinion if something like what happened to Them is preventable in a way, like genetic engineering, it should be an option for everyone. I know that the point of the video was not about this, so here is My opinion on bugging with nonlethal and/or life-threatening traits(, that differentiate from what is considered as "normal") with genetic origin: wait until we solve the problem of giving people with them a life more accessible. What is wrong with people? Why do some people think that someone with A.ttentionD.eficitH.yperactivityD.isorder and/or A.utismS.pectrumD.isorder is lesser in some way, than one without them? Why is it "unnatural", disgusting or "scary" to be anything else than a straight, cis, man with "perfect" mental-health? Normalism is way too much of a value to most of society. Xenophobia built in bias and stereotypes. Everybody is ever different from another no matter how much pressure there is differentiation will occur no matter what. I don't like the country I live in, It is broken, homophobic, transphobic, racist, and other poop like that. It is absolutely awful to live here. A couple 2 months ago another anti-trans and anti-intersex law was passed. The heads of the country happily said that yes they are homophobic and one compared homosexuality to pedopedos. The government is forcing Christianity in ads and propaganda. The way the prime minister talks is just like Donatd J. Trump: fakenews, libtards and whatnot. I do not like it. The school system is pretty much broken too. The government reacted poorly and is reopening in this very minute. I can not believe, how incompetent they are.
Please someone tell Me why!
My grandparents were blind and both were vain! They asked others what diffrent things looked like. Dressed very well. My grandpa was also a sancho lmao. You can feel face and body
Very interesting podcast, it's really got me overthinking, not much change there though, haha. Even though leaps in our understanding of science, technology and medication are essential for us, particularly to combat disease and global warming, which are prominent issues right now, it scares me.
I am autistic, and I know just by the sheer quantity of anti-vaccine people that many parents would opt to have a 'normal' child, rather than one who simply experiences the world differently. I would much rather we focus on making the world a more accepting and accessible place for everyone rather than going down this route. It would also definitely be exploited by the elites in my opinion. I just imagine that this would be extremely expensive and only available to elites unless of course it somehow benefitted the economy e.g. if someone were to have a disabled child, they may require extra support from the state, so the elites would benefit from letting such people use the eugenic system to prevent this. I reckon the elites would end up being the 'superior' race if you will, as in if they could change their child's genetics, why would they stop at disabilities and disorders? Heck, they may as well go all out; high intelligence, high athletic ability, high social ability, high cosmetic attractiveness, you name it! This kind of power would most definitely be abused by us humans, many of us just can't help ourselves.
Even though I believe that my life would definitely be easier if I wasn't autistic (and I must admit that the idea of being able to understand social nuances is enticing), I still wouldn't want to be neurotypical. I don't think that's because of a cultural factor as I don't know any other autistic person in real life, only online, and I was diagnosed at a later age. It's more to do with the fact that I think diversity is beautiful and valuable. We can learn so much from people who have different experiences to us. I find it fascinating when my friends don't hear what I hear, see what I see, do what I do, think how I think, and my friends have said that they find me fascinating too, because I'm so different to them, and they're so different to me. If it weren't for my autism, I wouldn't be me. Yes, I struggle with many things, such as socialising, executive dysfunction, sensory overload, understanding neurotypical people, being bullied for being odd, accidentally offending someone by being too blunt, daydreaming excessively, taking things literally, anxiety, obsessions etc, but there are also positives; I have a good memory e.g. I remember more minute things than it seems some others can, for example, I can memorise a menu at a restaurant (pretty useless that but it impresses my mum haha), and I have hyperphantasia. I have a different sensory experience to most people, which does have its positives, e.g. I can appreciate sensory experiences more than it seems others can, and stimming feels brilliant. I like having special interests because it feels amazing to immerse myself into my interests rather than enjoy them on a shallow level, and I can hyperfocus. Sometimes intense emotions are positive, e.g. joy (Autism is a spectrum as well, so my experiences won't reflect every autistic person, e.g. some autistic people enjoy socialising, have a bad memory etc.)
And some neurotypicals have positive aspects of their lives that I will never be able to experience, e.g. cognitive empathy, not relying on others so much, not taking a phrase literally the first time they hear it, the ability to regulate their emotions etc. And, like autism, there's kind of a spectrum of neurotypicality, by which I mean all neurotypicals differ (e.g. some can't regulate their emotions), just like all autistics differ.
It comes across as very unethical to alter someone's genetics in my opinion (seems similar to the Cybermen from Doctor Who), but as Luke pointed out, people in the future may very well disagree because their experiences are so vastly different compared to mine, so we will naturally have different views. Anyway, sorry for writing a novella, I always end up rambling when I'm overthinking. My point is, I think the diversity of the human experience is precious, and I don't want the genetic modification of fetuses' to destroy it by making us all too similar. Different experiences provide different outlooks, which in turn enriches our development as a species because we can each learn from other people's perspectives. Also, can you imagine how rubbish art would be if we were all the same? Right, I'll shut up now lol, sorry if you read all that, if only I could put this much effort into my schoolwork. Alas, it seems my brain would rather consider whether or not other brains should be altered for the sake of simplicity.
I love what Luke said at 41:53 ! I find this debate very interesting. It can be an emotional matter especially for those with disabilities like me. So I'm glad to hear this in the form of a very calm debate.
I think inserting a gene that the person can choose to change in the future would be the only reason to use gene therapy.
And by the reasoning in this video, you agree infant circumcision should also be stopped.
Yes, we also agree infant circumcision should be stopped
I feel like a lot of the arguments here are very similar to the ones on the right of abortion, yet people seem to treat them very differently
How so?
@@SciGuys Well when there is an argument over weather abortion should be widely allowed, a lot of the time one of the 'for' arguments is about the health of the baby, if it will be born with an illness or a disability, and that the mother should choose weather she wants to raise her baby in those circumstances. But I've pretty much never seen someone bring in these arguments you've discussed here to be against it which is interesting as it's pretty much the same issue, if not even more applicable, as you're contemplating actually terminating the pregnancy compared to just altering the genes to "fix the issue". Just thought that it was interesting that that argument isn't brought up more in those circumstances.
Thanks for the reply by the way, love the podcast! Especially as you always argue both sides of the issue and really make me think and question everything!
Karolina
It’s also a selfish thing to knowingly bring a disabled person into the world. Know what they’re quality of life could be. As a disabled person if my parents could have taken sicklecell out of the equation it would have been such a relief.
Once the baby is here, they eventually become an adult who then has the manage this disability and navigate the world with it. I’m for bringing the babies as close to healthy and fully functioning as possible and trying stay in the realm as it relates to health.
luke makes the podcast so much more interesting and funny.
So far this has been my favourite episode
I think that saying we shouldn't shame parents for choosing to remove a gene from their unborn child is true to the extent that we shouldn't shame people, but as a disabled person - if you're not ready for your child to be different from you, you should reconsider being a parent, because your child will be different from you, no matter how much you "desing'' them, they are a different person with a different life and if you are going to raise a child you have to accept that. So why desing babies? I think the illusion of control is very dangerous.
around 44:00 when they were talking about what nature intended.
as an ftm, I appreciate that because that argument can be used against transgender people.
“well that’s what deaths for” love it
I would like to point out as well that with some genetic diseases the gene that codes for it actually does end up coding for something else that is actually beneficial, right? I've heard that the gene for sickle-cell disease actually decreases the risk of malaria (which is a very common and very deadly disease in the same area which sickle-cell is also common.) correct me if im wrong though obviously
I don't know if that particular thing is true, but it is plausible, lots of things that make us ill in one circumstance can save us in another. Or things that are a hindrance in one particular set of circumstances can be essential for survival in another.
James you’re right my nana went deaf after birth she was in her sixties at the time she had a car accident and it caused her eardrum to perforate causing deafness 🧏♀️. She could read lips and also we communicate by using notepaper to ask questions and tell her things . She passed away when I was twelve but was just the loveliest woman and part of making me the woman I am
Adding to the deafness conversation, a potential way to deal with this is to ask the parents of the child "would you like your fetus to be scanned for this or that health issue" this way parents can choose if they will have power over the child, and parents who for example don't have the resources to assist a deaf child, they can choose not to have one. If some parents are in the position to assist with most possible health issues, then they can choose not to change anything about the genes of this kid.
Just a thought :)
The problems with eugenics run deeper than most people think, which is why it's horrifying to hear so many well-intentioned people espouse its merits. For starters, it would be unethical to conduct any experiments to test whether or not it works, but we already know it doesn't work, which means those experiments would cause unnecessary pain and suffering. Historically those who have implemented eugenics have ignored actual science, and based their determinations of "fitness" on normativity and politics. It's far too easy to assume that the majority in a given society is the only valid way to exist, and that everyone who falls outside majority categories is somehow disabled or defective, and in need of correction.
Comparisons to animal husbandry and selective breeding in agriculture are question-begging at best, because humans have selected for desirable traits based on profitability, yield, and pretty much whatever benefits us, regardless of the expense to the plants or animals. If you were to release these domesticated species into the wild, most of them would die quickly, because the benefit of a trait depends on the environment. Likewise a lot of conditions in humans that we think of as "disorders" have turned out to have evolutionary benefits.
I've heard that one of the biggest ironies of eugenics is that, given that humans are social animals, the most productive human society would be one where everyone has a strong sense of empathy. This does happen to have a genetic component as well. Clearly anyone advocating for the murder, sterilization, or genetic manipulation of others to fix problems that society has defined into existence is lacking in the empathy department. Therefore any eugenics program that followed its own rules would have to start by getting rid of those who advocate for eugenics.
it being called positive and negative eugenics is so weird it should just be called additive and subtractive or something like that ????/..???
28:42 when did owen wilson get in the room????
Something that was touched on for a second is the actual main point of the CRISPR alterations; parents need children they can bring into the world. If a parent isn’t equipped to educate themselves, their family, teachers, others who will interact with the child, and the child about deafness (sign language and life in relation to being deaf) then the child is doomed. Raising a deaf child properly is expensive, and very hard emotionally and time wise.
The improvements to the accessibility of the world shouldn’t come from an increase of deaf children who could’ve had a much easier childhood, and parents who could’ve had a much easier time raising their children. Deaf spaces and communities can still matter, the world can still be made more accessible, and we can still destigmatize deafness. We can also make sure that in a very inaccessible world, we allow kids to grow up as easy as possible.
It's so frustrating that a bunch of fully able guys are discussing this. I wish you had invited a few disabled people to give diverse first-person perspectives.
Unfortunately finding a guest isn’t always possible - also we only have the capacity to have one guest, so it would only be one more perspective.
Additionally, eugenics is heavily rooted in racism and removing “deviant” traits - which is something that applies to a number of us on this podcast.
I get not wanting to offend people and then being a victim of Cancel Culture. But the fact that you have to bring up "Make the world accessible" defeats any notion that there is equality of life between deaf and not-deaf humans. Being deaf means you are dependant on others to compensate for your lack of hearing. I think about parenthood all the time, and school shootings scare me. I wouldn't want my child to be deaf during a school shooting, he/she will only be aware of A threat by watching the behavior of others. Then it is a guessing game. Yet...I'm supposed to feel like a Nazi because I'd have the doctors cure my child? I'm supposed to say "Oh...but...if my child isn't deaf there will be less deaf people!" and let them be born lacking ...sound? No music? Can't hear me express my love, can't be comforted by my voice? Sounds like a type of Hell, and my respect goes to those who live it....but If given a choice... I'd not say no to a cure.