Good thing RFK pushed out the official overseeing this financing and the current administration is actively defunding the organizations that produced this.
Better to have more disabled or dead babies instead of science.
/s
The current administration doesn't care about kids. They only want you to not terminate a new kid from being born. That they care lots about. What happens after birth is not their concern. Also, I think when they say they want more babies, they want a specific subset of babies to increase.
> The current administration doesn't care about kids.
Of course they do. But untold amounts spent on very few kids could be spent elsewhere on many more. Federal budgets are a zero-sum game.
> Also, I think when they say they want more babies, they want a specific subset of babies to increase.
I've seen quite a few conservative commentators celebrate that the massively disproportionate levels of African-American abortion have been reduced, resulting in more African-American people being born, and zero bemoaning it. So maybe you're right.
Genuine question: is this research not being pursued in China?
A Chinese scientist claimed that he did CRISPR on twins back in 2018. https://www.science.org/content/article/crispr-bombshell-chi...
He was jailed for illegal medical practices but it seemed like he established a proper lab after serving the sentence and hopefully he is focused on less objectionable practices. https://www.npr.org/2023/06/08/1178695152/china-scientist-he...
From a purely utilitarian perspective, funding research like this is not an effective use of dollars at the margin. How many people could we save if an equivalent amount was put into reducing obesity, smoking, and drinking? How many people could we save if we stopped spending money we don't have to do things that the government isn't competent at allocating anyways?
That's not to say the research itself is not impressive nor important, but think critically about the fact that this money doesn't exist in a vacuum.
I think you may be operating under the assumption that the extremely expensive price tag will need to be repeated for each patient.
In reality, as this process becomes more mature it is going to become inexpensive.
The reduction in cost will almost certainly be similar to reduction in cost needed to sequence an individual's genome, which has fallen from tens of millions to hundreds of dollars.
The only catch is that we have to spend money to get there.
Another catch is that the nations who underwrite this research will turn millions in investments into trillions in dividends and the stingy or poor will be left in the cold.
Seeing that private enterprise is only good at taking publicly-funded work and patenting it, and that in the absence of public funding nothing ever gets invented, we should be all-in on this.
edit: it's apropos that you mentioned obesity because GLP-1 drugs are the direct, irrefutable, product of spending at government labs.
edit2: specifically, a single government scientist playing around with lizard saliva in the 1970s because he thought it was interesting.
> In reality, as this process becomes more mature it is going to become inexpensive.
There's no evidence to support that gene therapy will ever be inexpensive. We can merely say that the process may become less shockingly expensive.
> There's no evidence to support that gene therapy will ever be inexpensive. We can merely say that the process may become less shockingly expensive.
A similar thing has been said about so many cutting edge therapies and technologies in the past that I think you'll end up being quite surprised.
Eventually someone will invent a machine that spits these therapies out like espresso machines.
What should we as humanity, as society, spend most of our wealth and resources doing?
Sending robber barrons and their girlfriends into space?
I'm of accord with the Utopians of Ada Palmer's Too Like the Lightning:
When a Utopian dies, of anything, the cause is marked and not forgotten until solved. A fall? They rebuild the site to make it safe. A criminal? They do not rest until he is rendered harmless. An illness? It is researched until cured, regardless of the time, the cost, over generations if need be. A car crash? They create their separate system, slower, less efficient, costing hours, but which has never cost a single life. Even for suicide they track the cause, and so, patiently, blade by blade, disarm Death. Death, of course, has many weapons, and, if they have deprived him of a hundred million, he still has enough at hand to keep them mortal. For now.
So we should not even try to help the sick because 'death' has too many other ways to kill them?
I mean the opposite. We should continue seeking cures to every fatal condition, from the common to the rare.
Thanks for clarifying. Apparently returning to Reddit has made me cynical.
>There's no evidence to support that gene therapy will ever be inexpensive.
My prediction is based on the number of efforts, too numerous to list here, being undertaken to develop lab equipment to automate the extremely labor-intensive workflow and the accumulation of vast libraries of CRISPR-Cas9 screens and dependency maps, the creation of which are also expensive and labor-intensive.
All those wasted dollars and time put into the discovery of the germ theory of disease instead of growing and distributing food to the invalids.
It's super effective funding.
There are known DNA changes that would probably help all people with chronic diseases, but it's ethically more accepted to go for the more fatal diseases and cleaner cases first, like a rare mutation with a high fix rate.
Given the admin’s propensity for cutting spending on research like this and other domestic interests while ratcheting up military spending I think that poster’s point stands.
30 million people in the US are affected by "rare" genetic conditions.
Yes, but the cures here aren't general. They're highly specific, and the rare conditions have a long tail- large numbers of different conditions, each with a very small population of affected individuals, and likely, the treatments will be somewhat customized for each type of disease.
See my comment above. Getting approval for rare diseases and expanding the indication to the common form of the disease is a well established strategy in pharma.
yes, but that's totally different from coming up with a generalized treatment for a wide range of "rare" diseases.
Also rare genetic diseases give insight into the underlying mechanisms and pathology of common sporadic diseases, which can be leveraged to develop new and better therapies.
Getting a new drug or therapy approved for a rare form of a disease and then expanding the indication to the common disease patient population is a well established strategy.
That is not comparable at all. To save people from obesity, smoking and drinking, you don't need more resources on fundamental research. You need different education, and socio-economical programs, possibly even less funds on the overall: if no resources is spent anymore in promoting bad habits, you end up with more financial resources and a healthier population.
Instead if no resources is allocated on developing all the technical requirements to do such a thing, humanity ends up with less tools to heal itself, and that's it.
a) that statement above has nothing to do with RFK
b) the whole point of NIH and other government research funds is to pay for this sort of "not clearly an effective use of dollars" type of research that Pfizer et al won't touch. but you can look at a ton of future applications from this - lipid packaging, CRISPR methods, drug delivery, etc that had to be devised, and could conceivably be commercially viable if the methodology is perfected and the cost comes down.
I admit to having a similar thought to this - especially if it is then going to be commercialised and sold for millions of dollars per treatment.
BUT the long term view of creating a technology that can treat any genetic illness (or maybe even any illness?) must outweigh that _eventually_
I’m glad we don’t only think from a utilitarian perspective then.
It's not even that. Utilitarian premises still let a very broad set of perspective. A long term perspective on large humanity won't lead to same conclusion as what will be the most joy inducing experiences in the next 24h for the 1% wealthiest people in the world right now.
How do you know it's not effective? The cost per life saved is extremely high now, but this stuff gets better over time. How much did penicillin cost to produce originally?
Early penicilin was rare enough that they collected the urine of the first patients and re-extracted penicilin from it for further use.
This argument could be used to stop absolutely any research that isn't dirt cheap.
Maybe even the dirt cheap one, because even 100 dollars could go longer way somewhere in the Sahel.
It is good that the humanity does not have a one-track mind.
I’ve thought about this recently as well and I don’t know if I have a fully developed view. What is the moral responsibility of all people to pay for medical research or operations that would affect a small number of people. Is it ethical to compel others to pay for the research deemed valuable by some, but not by others. Who is the arbiter of that research’s value?
I could say I believe the government should fund research into fixing people who think cilantro tastes like soap because for most of us it is delicious and promotes healthy diets. Should I be able to compel (tax) you to pay for that research?
Where that line is drawn will always be wrong to someone. How research is prioritized will always be wrong to someone. Is there an ethical way to determine the best use of collective resources and what portion of one’s property must be taken from them to fund that research.
I think that taxpayers should be advised that science is not a straightforward process like building a house from blueprints, and that a lot of important discoveries happen serendipitously.
The cilantro taste stuff does not sound absurd to me at all. In biology, there is no hard wall between banal stuff and critical stuff; they interact and fundamentally operate in the same environment under the same genetic and epigenetic rules. Sure, the research necessary for correcting cilantro-as-soap may be marginal, but there is a chance of discovering something significant along the way.
We should be more careful and also honest when communicating about science to taxpayers.
> How many people could we save if an equivalent amount was put into reducing obesity, smoking, and drinking?
How confident are you the answer isn't very close to zero? We've already curtailed smoking quite a bit in the past 30 years. At the level of an individual, it isn't any particular mystery how to stop obesity or to simply not drink, but population-level interventions attempting to get people to voluntarily behave differently for their own health historically haven't worked well in these specific domains. Throwing more money at the problem doesn't seem like it would obviously change that.
Also keep in mind that overeating and alcohol addiction have significant genetic components. Research into gene editing has the eventual potential to cure damn near any disease, including whatever pet causes you personally think are worth defeating.
>population-level interventions attempting to get people to voluntarily behave differently for their own health historically haven't worked well in these specific domains
Said like that it paints things like there are not far more resources spent on propagating the bad habits (as some ROI is expected from this by some actors), and any attempt to put a social health program in history always ended in major catastrophes.
It is also capable of creating new diseases that will be resistant to anything we currently have to fight with.
You can torture and execute people with electricity, but it does not follow that discovery and use of electricity was, on the net, a wash.
Because reducing obesity, smoking and drinking is not a money problem in the slightest.
I completely disagree, the things you mentioned are all things which a person has a level of control over.
This is something beyond that, and is very valuable as this baby has no actual means of fighting this issue at all.
And who's to say this won't lead to fixing the other things anyway.
Great use of dollars