The problem is that we don’t know whether this would prevent diseases with any reasonable certainty, and using non-consenting human beings to try to find out implies a profoundly dangerous devaluation of human life and individual rights.
If you can reach a high certainty level through other kinds of tests, then that would be another story.
Sickle cell disease affects millions of people, and it's the most common inherited blood disorder. We know for sure that certain mutations in the HBB gene cause sickle cell disease, so I think there is 100% certainty when you're correcting this specific mutation. People who don't inherit this mutation don't get sickle cell anemia. (Because their HBB gene doesn't produce blood cells that are shaped like sickles.)
I didn't realize that CRISPR gene editing can cause damage to other genes [1], so it might not worth it yet. If there was a perfect CRISPR procedure that had no other side effects, then it would be hard to argue against that.
> The problem is that we don’t know whether this would prevent diseases with any reasonable certainty, and using non-consenting human beings to try to find out implies a profoundly dangerous devaluation of human life and individual rights.
I sure hope you are pro-life, otherwise making "consent" and "individual rights" a foundation of your view would be pretty hypocritical.
In my view, if you aren't even a fetus yet, you can't possibly have any rights. You're not a human being. During IVF, you select the embryo with the best health prospects - the rest may be destroyed.
Keep in mind I only disagree with the foundation, I still think the procedure is unethical because the scientific basis is poor.
Being pro-choice doesn’t require nullification of an unborn child’s rights. It’s the recognition that the mother’s right to agency over her own body takes precedence.
That does not imply that a doctor or researcher has the right to risk causing debilitating life-long symptoms to another human being at any stage of development without a clear medical justification.
By your reasoning, because an embryo has no rights whatsoever, it would be fine to experiment wantonly for the sake of producing circus attractions. I presume you wouldn’t actually support this?
I also fail to see how the scientific basis is relevant to the ethical question. Whether the science is good or not, we’re talking about unnecessary procedures with inherent failure rates that can have brutal life-long consequences. I can’t see how someone can support this unless they are fundamentally lacking in empathy. As I asked another poster elsewhere in the thread, do you really think you would feel the same if something like this had been done to you and caused you to live with a painful deformity? Would you care then whether the science was good?
> Being pro-choice doesn’t require nullification of an unborn child’s rights. It’s the recognition that the mother’s right to agency over her own body takes precedence.
> That does not imply that a doctor or researcher has the right to risk causing debilitating life-long symptoms to another human being at any stage of development without a clear medical justification.
It's not the doctor making the decision to go ahead with this procedure, it's the mother. So, according to you, a mother has the right to kill an unborn child in the womb because it's the wrong gender (not uncommon in China) and that's "agency over her body" but then she can't attempt to mitigate the HIV risk it has given her child by procreating with an HIV-positive male. This is absurd.
> I also fail to see how the scientific basis is relevant to the ethical question. Whether the science is good or not, we’re talking about unnecessary procedures with inherent failure rates that can have brutal life-long consequences.
Nobody knows if there will be "inherent failure rates that can have brutal life-long consequences". That's why the science is bad. If the science was good, you'd know if the procedure is really that risky or not. If the procedure was 100% safe and effective, it would be unethical not to perform it.
Again, you are effectively arguing that it would be ethical for a doctor to try to experimentally create a glow-in-the-dark baby if asked to by the mother.
Good or bad science has nothing to do with the outcomes--that's good or bad medicine. There's plenty of 'good science' practiced on lab rats that would immediately become horrifyingly unethical if practiced on humans, but that has nothing to do with how well the scientific method is being applied and what can be learned.
Anyway, this discussion doesn't seem to be going anywhere productive, so I will bid you good day.
> Again, you are effectively arguing that it would be ethical for a doctor to try to experimentally create a glow-in-the-dark baby if asked to by the mother.
No, I am not arguing that. That's an embarrassingly absurd conclusion to draw.
These babies have a risk of life-long HIV impairment. This intervention may prevent this. With any medical intervention, you need to trade off risk and reward. Obviously, for an unborn child, there can not be any consent here.
It would be unethical to not give the babies the treatment if there wasn't any risk associated. What makes it unethical is that the risk profile isn't even known. The scientific foundation is poor.
> Anyway, this discussion doesn't seem to be going anywhere productive, so I will bid you good day.
I agree and let me say this: You're by far the worst discussion partner I have ever had on HN.
If you can reach a high certainty level through other kinds of tests, then that would be another story.