

- You’re missing risk/reward calculations. In healthcare it’s not about whether something’s “good” or “bad”, it’s about whether rewards outweigh risks for the individual.
- Consent is consent, and the existence of a law against a practice - even an otherwise ethical practice - does not waive the ethical need for consent. Doctors have been known to practice against local laws - abortion, euthanasia, gender-affirmation, etc. There are scenarios where healthcare can be ethical and illegal, but only with consent.
Oh! Understood.
This is not the first time somatic gene therapy has been successfully performed, and it does indeed get the consent of the FDA! In the link is a different treatment, similar principle.
I’m sorry, I should have realized this was what you were asking about!
The #1 from the beginning was way more biologically and legally important than it might have seemed at first - the child was already alive.
The key difference between the two cases is germline vs somatic.
Germline editting is what occurred with the twin embryos. The germline is your hereditary/genetic line - reproductive cells and embryonic stem cells. This involves permanently altering the evolutionary path of humanity, at least for your offspring and descendants. (Fun fact - on a long enough time scale, any given human eventually becomes either ancestor to all, or ancestor to none. So a germline edit could literally change all of humanity!)
Editting the germline is generally still illegal, and arguably for very good reason, at least at humanity’s current stage of science and social ethics.
Somatic gene editting is altering the DNA in somatic cells, which have already differentiated and specialized. This is almost all of the normal cells in your body. These cells can often reproduce more cells, but generally cannot ever produce different cells. Your bone marrow can never create a neuron, for example. An embryonic stem cell can create anything.
In this case, the gene therapy targets only the liver cells and makes the needed change. Unlike germline therapy, somatic therapy like this shouldn’t affect anything in the body other than the liver. Which was already busted to begin with, which obviously decides the risk/reward calculation.
The “personalization” is from editting the child’s cells and DNA directly. It looks like past treatments involved editting immune cells outside the body and transfusing them into the patient. I presume those were someone else’s immune cells. People trade them all the time with blood transfusions.
So this is a pretty exciting development! But yeah, very different cases biologically speaking, not just ethically.
And rereading your past comment, this is exactly what you were talking about. So sorry I missed that. This is, in fact, non hereditary, non contagious gene editting!