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Baby is healed with first personalized gene-editing treatment

(www.nytimes.com)
1168 points jbredeche | 2 comments | 15 May 25 18:06 UTC | HN request time: 0.416s | source
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chewbacha ◴[15 May 25 19:23 UTC] No.43998395[source]▶
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

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pacoWebConsult ◴[15 May 25 19:31 UTC] No.43998457[source]▶
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.

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inglor_cz ◴[15 May 25 19:48 UTC] No.43998619[source]▶
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.

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1. jonhohle ◴[15 May 25 20:31 UTC] No.43999019[source]▶
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.

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2. inglor_cz ◴[16 May 25 11:17 UTC] No.44003975[source]▶
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.