Genetic Engineering the next generation

Yep, ethically nonsimple and definitely open to slippery slopes. Like, if you can edit the diabetes out of my bloodline that'd be lovely thanks! There's so many conditions where there's just no advantage to it, no argument against fixing it imo. Benefits to me, benefits to society.

But you've only got to think for a second about male/female birth choices to see one end of the wedge. Or look at the existing arguments about deafness and implants, where people genuinely believe that deaf culture is worth preserving, and they may well be right. Sometimes it's tempting to say "let it be a parental choice" as we already do with so much, other times it's stuff that it'd be irresponsible to do so. And so easy to personalise it down to individuals, much harder to see it across whole populations- everyone's met people with serious disabilities who've flourished with it, but we tend not to think so much about the people who don't, because they don't get inspiraitonal snippets on the news.

And of course like everything else, the future's already here but unevenly distributed, it looks like we could be going into a phase where genetic tinkering and improvement's available to the wealthy world while other countries are falling beneath the sea or losing their fresh water and crops.

One of those times we'll also want to listen to the science fiction.

Humans have been genetically engineering themselves for millennia, by choosing the partner who seemed strongest, or possessing characteristics that seemed most advantageous and would provide the best children.
It’s basically how humans ended up with between 2 and 7% Neanderthal DNA, and Neanderthals disappeared - Neanderthal females were mating with Homo Sapiens males, not the other way around.

I have no issues at all with modifying human genetic structure to remove forever horrors like cystic fibrosis, children born with it grow up knowing that they’re never going to grow up, and have a life free of suffering and have a proper family life.

CRISPR technology is already being used for editing out a variety of medical conditions, and more will be discovered to be treated in the future.

Treatments for Alzheimer’s are on the horizon, as it’s been shown to be caused by gut bacteria, and a variety of diseases that were thought to be untreatable have now been found to be connected to the Epstein-Barr virus. Diseases like Motor-neurone, Parkinson’s, etc, could now be treated with available drugs or combinations of drugs.

Would you put a stop to treatments being developed to prevent people dying a lingering death that could easily treat these diseases?

You can genetically test and select embryos for serious monogenic diseases (caused by single genes). This is governed in law in the UK, overseen by the Human Fertilisation and Embryology Authority. Specific serious disorders are licensed.

You cannot test and select for polygenic diseases (like diabetes - sorry no testing for this one) since we don’t know which specific genes are causative. You can’t gene edit (CRISPR) embryos either in the UK.

There is a possibility of in utero genetic editing of conditions like Downs Symdrome and cystic fibrosis. This is an area of research.

It will get out of hand, which is why it's tightly regulated.

There was an older guy with Downs in a cafe I was in the other day. His absolute joy as he went round looking at the Christmas decorations was wonderful to see, his happiness was so infectious.

I didn't know (but suspected) testing was already available. Don't forget though, i'm talking about genetic engineering, not abortion (so the Downs kid would still be alive, just without Downs).

Timely new BBC series:
https://www.bbc.co.uk/sounds/brand/m001fd39?partner=uk.co.bbc&origin=share-mobile

As a parent who has a child with Down Syndrome, this gives me very mixed feelings. On the one hand, I wouldn't change my daughter for anything. The life we have with her, and the community of other families in the same boat is hugely enriched as a result of her having Down Syndrome.

But, there is no doubt, she faces, and will always face, challenge and prejudice as a consequence. And she will likely have more limited opportunities in the future in terms of education, independence, friendships, relationships, employment etc.

We've always lived (or tried to) by the principle of "I wouldn't change you for the world ... but I would change the world for you". But, of course, that last bit is actually really tough to do ... we'll never be able to create a level playing field for everyone.

I think the other thing that having a child with DS (or any condition/disability) is that it changes you too ...

And, taking it out of the personal, isn't there something about how a society is defined, in part, by how it deals with difference, values everyone, and treats the more vulnerable?

If human does not know all the cause of human aliments why do they think they have the right solutions?

But, could it get out of hand?

Yes. Next question please.

the NHS offer IVF (with selective embreo choice) for people who have the brest cancer gene (to make sure they don't pass it down). I was surprised, but I guess financially, its a lot cheaper covering ivf than it is cancer.

The science and technology is around now.

🤣 reminds me of the early 2000s with the human genome project and various proclamations (I see you Wired magazine) that disease was now a thing of the past and ‘biology is solved’. Turns out it’s a bit more complicated than that.

An article I direct optimists to is ‘can a biologist fix a radio’? https://www.cell.com/fulltext/S1535-6108(02)00133-2

I often work on projects involving advanced therapeutic medicinal products (cell and gene therapies). There is no denying that there are brilliant people doing very smart things. There have definitely been some advances. For example, a list of FDA-approved ATMPs - https://www.fda.gov/vaccines-blood-biologics/cellular-gene-therapy-products/approved-cellular-and-gene-therapy-products

However, compared with what you’re suggesting OP, these are very limited applications. They’re also fairly expensive. For example, ZOLGENSMA® is reputed to be USD1.79m/dose - perhaps incorporating the perceived value of the QALYs gained from the expected single application.

Germline editing with CRISPR is further away from sci-fi dreams/nightmares than the PR might indicate https://www.nature.com/articles/d41586-020-01906-4

And the only reported instance of humans with embryonic gene editing is not well-regarded. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6724388/

The technology is early in its gestation. Though prominent in its hype.

The ethics are still developing. And any talk of ‘improving’ or ‘editing’ humans and their genomes ends up in the same place: eugenics. Not a good outcome. And one that must be avoided.

My personal view is similar to that of @hardtailonly ‘s - we need to embrace the human condition in all its diversity.

I was going to say pretty much the same thing. Not so long ago a group announced they had found the gene for red hair (MC1R) turns out after a bit more research, it's nothing like as clear cut as that, and it involves a number of genes acting (or not) in co-ordination. I think we're a bit further away from safely modifying or altering the next generation.

I would rather see efforts directed towards embracing the human condition in all it's diversity.

From personal experience I know a bit about Motor Neurone Disease. In most (but not all) cases it is caused genetically, it runs in the family. I would be overjoyed if gene editing could prevent this horrible condition and many others like it.
Call it eugenics if you like but banning the research and allowing terrible diseases to persist could also be seen as a form of eugenics?

Speaking as a parent carer for my amazing 7 year old boy who has a rare genetic syndrome - Cornelia de Lange Syndrome. This is my personal take although I've never really given it too much thought tbh.

The main thing I would change is the pain he suffers intermitantly 24/7 with gastro/GERD reflux. My boy is non verbal, moderately deaf, with very discrete communication and requires adult supervision throught the day and when in pain at night. The genetic side of things also effects his size and ability to gain weight amongst many other issues. He is under 23 consultants and we have been working on the gastro issue since birth without any major improvement. When he is comfortable his ability and energy to learn is greatly increased. If I could remove the pain then I would in a heartbeat, it's unbearable. Tbh all his other issues are manageable but with side issues.

The positive...despite all this he has this magical effect on people, like a magnet that kind of hooks people in when they get to know him. He is a wonderful little person and advocate within his peer group helping to teach his school mates about people with disabilities. We hope this builds to a better understanding in the wider community.

So, if it was possible to remove the pain element then of course I would but I may be being naive here (v tired parent)!

I see we have shifted from the OP’s ‘design our offspring’ closer to reality: treating disease.

On this latter piece there is continuing improvement. When I started in healthcare in the early 90s surgeons were still cutting up stomachs to treat ulcers despite the emergence of H2 antagonists and the H. Pylori linkage. Now? PPIs and some antibiotics. Outcomes for some autoimmune diseases and some cancers have improved. And so it goes. It’s pleasing to see renewed interest in developing treatments for neurological and psychiatric diseases too.

Is this not effectively stopping the engine that drives evolution?

Evolution occurs when random mutation proves to be useful. If we stop all random mutation, by editing DNA/Genes and 'engineering' the next generation, won't we kill all chance of further evolutionary development?

I'm all for treating illness in people but they have to be born 'naturally' in the first place - otherwise we will be in trouble.

Is this not effectively stopping the engine that drives evolution?

No.

Thought-provoking thread, thanks for posting. I'm really not sure how I feel about this so am reading the comments with interest.

My gut reaction is that if we can cure nasty horrible shit like NND or eradicate cancer at a genetic level then why the hell wouldn't we? This isn't a million miles away from vaccination, surely few folk would mourn the loss of polio.

Then we have a poster talking about their deaf kids and the community it's fostered and I wonder, well, a sense of community is great of course, but would it be a net loss if no-one was ever deaf any more? Possibly, if it means we lose resource and support for people becoming deaf later in life. A "price worth paying?" I don't know.

The poster talking about their son with a rare condition who has a magnetic personality... is that because of the condition or despite it? I guess that's impossible to know. You wouldn't change him now of course because you know how wonderful he is, but if circumstances had been different I doubt any parent would be sitting there going "damn, our baby is 'normal,' I wish he had a life-changing incurable ailment."

Now closer to home for me... so-called Autistic Spectrum Disorder. If the technology had been available, should I have been 'fixed' in the womb? I had a miserable childhood because of it and if you'd asked me as a young teen if I wanted to be "normal" I'd have said yes in a heartbeat. But as an adult not on your nelly, for all the baggage it came with it's part of who I am and hell, it's a superpower. This, I suppose, isn't a world away from what nt80085 was saying?

if we can cure nasty horrible shit like NND or eradicate cancer at a genetic level…

truth is: we can’t. And folks are right, the discussion alone opens a can of philosophical and ethical worms. These need to be eaten (metaphor soup?) as we develop our understanding and technology.

The book ‘the emperor of all maladies’ has some information on why this may never happen for some diseases. the Cell article I linked to earlier shows that it is complicated.

Edit: very nicely summarised @cougar

I probably have side tracked the discussion with my own stuff going on, not intentional, just trying to make sense of it myself I guess as its a really interesting question.

The magnetic personality thing...it is because of his condition, his size being very small and well he's a cheeky bugger with a great smile. But its sympathy and empathy from people that can see the potential of the boy and desperately want to help him (and us) too. Plus its probably me trying to imagine the situation slightly better than it actually is.

Had someone given me the choice whether to have a 'normal' child at birth or one with a disability then I am guessing anyone would be pretty nuts to say 'you know what, for humanity I'll take the disabled child, I have no experience of being in this situation before but hell I do love a jolly good challenge, one that will last until the day I die too? - excellent, bring it on'. Does this make me a bad, selfish person? I cant change my son so the narrative has to be 'no I wouldnt change him' on reflection I should probably give this more thought as Im regularly asked this by random people in the street, followed by 'ah, bless'. Yep, cheers for that, you have a good day now.

If we were to try and have another child we would be offered (I think) additional screening because of our history potentially giving us a percentage of having another child with similar issues. Is this right or just sensible? Seems pretty sensible to me. What you do with this information though is difficult to judge as every personal situation is so different.

Not sure if I just gone full circle?! Last post from me as Im not sure what Im actually trying to say! 🙂

I didn’t know (but suspected) testing was already available. Don’t forget though, i’m talking about genetic engineering, not abortion (so the Downs kid would still be alive, just without Downs).

The problem is, someone, somewhere will take the honourable intentions and use it for the worst.

I'd love to see it eradicate terrible diseases, but mission creep would be hard to control.

Humans have been genetically engineering themselves for millennia, by choosing the partner who seemed strongest, or possessing characteristics that seemed most advantageous and would provide the best children.

Inventions such as makeup and fancy dresses seem to cloud this judgement and so many of us are Louise'd.

Humans have been genetically engineering themselves for millennia, by choosing the partner who seemed strongest, or possessing characteristics that seemed most advantageous and would provide the best children

Tell me you have never been to Torquay without telling me you have never been to Torquay 😉

Getting back to the OP’s question. There is a very good prenatal test for Downs Syndrome called Non Invasive Prenatal Testing (NIPT) which detect Downs from 10wks on. It’s available on the NHS for many pregnancies.

Interestingly the research shows that NIPT is looking upon as informative by many prospective parents and doesn’t always lead to a termination after a positive. There is a big pro-Downs community out there. As there will be for other disorders such a deafness and Achondroplasia.