[SoftAnnaLee]

The ethical concerns were not just the parental waiver; but rather a number of issues. Such as implicit coercion (i.e. forcing subjects to pay exorbitant fines for backing out of the research; seeking out patients who may have no other options for IVF than this trial), inadequate communication of the risks that Gene Editing may have, and improper communication of the actual predicted effect of the trial (i.e. "your baby will be immune to HIV", rather than having a potential increased resistance to HIV).

As for the ethics of gene editing itself, the risks of gene editing are poorly understood. Not in that we are ignorant of the risks, but rather that science does not have an understanding of what techniques of gene editing are effective. What therapies are effective. What therapies have side-effects, the intensity and fatalities of these side-effects.

It would be one thing if the dimensions to these risks could be ballparked (e.g. with how HRT for gender affirmation, the risks of therapy vs abstinence are decently understood and communicated to a patient before starting due to the current understanding of the human endocrine system, and the track record of patients in the past). But since the current answers to these questions range from theoretical to mostly unknown, it is difficult to properly convey the risk. And caveat emptor is an irresponsible perspective to have of the risk, as one can not truly consent to a complete unknown; especially on the fetus and future person who has not yet been conceived.

That said, I am in the opinion that in the case a person who understands the risk of no therapy is severe (i.e. a patient with a severely debilitating or fatal disorder or disease) or has a proper understanding of the lack of knowledge and risk of therapy (e.g. a geneticist who reads journals about these particular issues) then one can adequately consent. But the parents in this experiment were neither.