The martyrs of the future are often the demons of their time
By definition unborn children or infants cannot give consent. That has never been the basis for denying them medical treatment, including experimental ones. And in the entire history of medicine no established treatment exists without experimentation.
If this is even remotely successful you may be looking at millions of lives saved by preventative HIV treatment in regions where the disease still kills millions.
A 40 year old woman getting pregnant probably poses higher risks for their offspring than a lot of genetic experimentation. Is there any risk basis for these arguments or are people just apprehensive about gene-editing due to some naturalistic dogma?
Just to think through this, people with Huntington's can, with a 50% chance, bring kids into the world who are doomed to basically die of a horrific disease, that's considered the personal right of parents. But the same parents couldn't subject some cells to treatment to attempt to prevent this, that's unethical?
Therefore, if it would be unethical to do it to the human, it’s unethical to do it to the embryo.
> The scientist forged documents from an ethics review panel to recruit couples for the research
HIV resistance is optional, sure. What about conceiving a child with sickle cell anemia? Why is that more ethical than trying to give a child a healthier life?
We do a lot of medical treatments on children without their consent. There are now (experimental!) open-heart surgeries of children in the womb. Is that unacceptable too?
> The scientist forged documents from an ethics review panel to recruit couples for the research
You mean one with heightened malaria resistance?
https://www.csustan.edu/history/hitlers-ethic
Further- if we use dynamical system theory and look at coastal engineering-when we apply a control (say a barrier wall or "groyne" at the beach, to retain the nice sand) mother nature with time will work around it (the sand is carried by the tide and waves to carve out of the beach and deposit on the back of the retaining wall) https://www.researchgate.net/figure/a-The-terminal-groyne-sy...
Engineering nature properly requires a liberatory embrace of differentiation, diversity, and ultimately futility. The natSoc obsession with systemic perfection and crystallization leads somewhere predictable, and we rightly stamped the movement out (though many of the doctors worked w and moved to the US, and allies have had their share of eugenic fantasies and doctrines).
We need to wake up from the childlike belief in the infallibility of scientism. As Richard Feynman put it: "Science is the belief in the ignorance of experts"
What I’m talking about is not scientism. In medical research and medical practice ethical questions come up all the time. Someone has to make a decision about these questions. I personally don’t have the time nor the resources to adjudicate all of these questions, therefore I have to trust the decision of some proxy on most questions. Trusting a group of people who care about ethics, and know about medicine is a good proxy (the ethics board).
This doesn’t mean that I believe them infaliable. If you believe that a particular ethics board in a particular case made a bad call let me know. Identify the case, tell me what the board decided and what you think should have been decided and why. I promise you that I will use all my faculties to learn more about the case and make a decision of my own if possible. Does that sound like scientism to you?
That being said this is a complete non-sequitur in the present case. The article is not about an ethics board who made a bad call. It is about a researcher who skipped the whole process and decided that he alone is enough to decide what is ethical and what is not. That is very suspect in itself. Furthermore people think that he made the wrong call, and what he did was not ethical.
Are you arguing that the ethics board system is so faulty that he was right to ignore it?
Are you arguing that he made the right call in thinking that this particular intervention is ethical?
Surely not advocating for the latter, i think informed consent and voluntarism should be required. Personally not sure where i stand on some of the leading edges of genetic tech, but i also appreciate that there likely are arguments for development akin to atomic science. My hope is that we can continue to support and synthesize a broad spectrum of humanity rather than a few quantifiably valuable breeds. Im biased since i have a sibling with disability who i value more than the ethics boards that will triage him off of a ventilator :)
In this case, the parents likely did not have the information necessary to make a decision about their own offspring (especially since they were lied to).
As far as legal/societal decision making, I don't think we have a better solution than relying on experts. What is the alternative? Unless you are only talking about using personal morals for the purpose of discussing right/wrong rather than actually making decisions based on them.