[Symmetry]

After adenoviruses proved to be dangerous [1] I wonder what sort of virus they're using now?

[1] https://en.wikipedia.org/wiki/Jesse_Gelsinger

Are doctors allowed to use gene therapy in life or death conditions now? In the trial for fixing OTC deficiency that Jesse Gelsinger died in they only administered the trial to people who were capable of living with the disease as opposed to the babies that were going to die in their first year without it. The idea was that a parent faced with the possibility of their child dying painfully couldn't possibly refuse the treatment and therefore couldn't give informed consent.

[shagie]

A key point in the difference that might help explain it:

> On 13 September 1999, Gelsinger was injected with an adenoviral vector carrying a corrected gene to test the safety of the procedure

vs.

> Doctors removed his bone marrow - the part of the body that makes blood. They then genetically altered it in a lab to compensate for the defect in his DNA that caused the disease. ...

> A virus was used to infect the bone marrow with new, correct instructions.

> The corrected bone marrow was then put back into the patient.

This was a self transfusion in the lab rather than an injection of a virus. After the virus infected the bone marrow, it would then have been tested to make sure that there are no immune responses with the material and that it is safe to return to the patient.

[ralfd]

> The idea was that a parent faced with the possibility of their child dying painfully couldn't possibly refuse the treatment and therefore couldn't give informed consent.

Well ... I get the idea, but I am not sure this is rational. If I have the choice between pizza and no pizza, and of course everyone would choose the pizza, my choice is not uninformed, just because it is too good of a deal.

[true_religion]

The idea is that they would agree to anything, including things which has low likelihood of success and could be traumatic to the child simply because the known downside was too great.

People aren't very good at comparing a terrible known condition A, to a merely potentially terrible known condition B.

[Symmetry]

It strikes me not so much as irrational as that it's the sort of thing an evil mustache twirling bureaucrat would say in a Hollywood movie.