Nothing you are saying comes as a surprise, but my confidence in the process remains reduced. The problem here is that having a procedure for establishingwhether a patient is informed, all of the weight rests on the procedure, and virtually none on the practitioner. This is the same for all fields of expertise.
I have read many of these kinds of forms as a patient. What we want them to be for is informing the patient; what they are actually for is defending against the accusation that the patient was not informed.
The audience was very much preoccupied with how the procedure for informing the patient was conducted, and seemed to consider this the biggest red flag. I find the fact that the lead scientist kept referring to a form to be the biggest red flag, because it suggests he didn’t engage the ethical issues directly.
Suppose for a moment that he did a much better job informing the patients—proper training, third party verified composition, etc. I don’t think this would have any implications at all for how He Jiankui engaged with the question of whether it was right to do this, but I do expect the audience to have been largely mollified. I see this as a problem.
Nothing you are saying comes as a surprise, but my confidence in the process remains reduced. The problem here is that having a procedure for establishing whether a patient is informed, all of the weight rests on the procedure, and virtually none on the practitioner. This is the same for all fields of expertise.
I have read many of these kinds of forms as a patient. What we want them to be for is informing the patient; what they are actually for is defending against the accusation that the patient was not informed.
The audience was very much preoccupied with how the procedure for informing the patient was conducted, and seemed to consider this the biggest red flag. I find the fact that the lead scientist kept referring to a form to be the biggest red flag, because it suggests he didn’t engage the ethical issues directly.
Suppose for a moment that he did a much better job informing the patients—proper training, third party verified composition, etc. I don’t think this would have any implications at all for how He Jiankui engaged with the question of whether it was right to do this, but I do expect the audience to have been largely mollified. I see this as a problem.