Reactions to Jiankui He’s defence of his work on the first genome edited babies.
Dr Kathy Niakan, Group Leader, Francis Crick Institute, said:
It is impossible to overstate how irresponsible, unethical and dangerous this is at the moment. It will take a thorough investigation to find out exactly what happened and what if any approvals were in place before the experiment began.
He’s presentation did nothing to assuage my scientific, moral or ethical concerns about the work. There was a worrying lack of oversight or scrutiny of his clinical plans before he started human experiments and a complete lack of transparency throughout the process. I found it highly troubling that He avoided questions about approval processes and his answers on patient recruitment and consent did not reassure me. The team don’t seem to have had adequate training on proper consent processes, and offering vulnerable patients free IVF treatment presents a clear conflict of interest.
He also failed to address the question of why he went ahead with the experiments despite strong international consensus against such procedures. There is a real danger that the actions of one rogue scientist could undermine public trust in science and set back responsible research.
Dr Helen Claire O’Neill, Programme Director, Reproductive Science and Women’s Health, University College London, said:
“Today Jiankui He was given the opportunity to defend his actions and present the unpublish data which led up to and includes the plans for future monitoring of the genome edited twin babies Lulu and Nana.
“In a dramatic and press filled auditorium, it was hard to hear his opening apology over the camera clicks and flashes. His stance was repentant but he delivered a full and detailed outline of his preclinical results in mice, monkeys and human 3PN embryos, which he claims have been submitted to a journal and sent for peer review. It was however in the question session following his presentation that many of the critical burning questions were answered. Professor Lovell-Badge began by asking the predicted questions and those most commonly passed to him by the press.
“We learned that 31 embryos from 7 consented couples from HIV support groups (where only the male was HIV+) were edited. Of those, we know of the twins born (one carrying both mutated copies and the other with only one copy of the intended mutation), and another ongoing pregnancy (reportedly a chemical, or very early pregnancy).
“Professor Porteus, pressed Jiankui He the matter of transparency and about the process of consenting as well as the level of peer assessment with which he prepared and carried out ethical processes leading up to the consenting of the patients. The shocking revelation that just “four people” had read these documents was a twofold one, firstly because so few people were involved and secondly that there would be associated repercussions for these unnamed individuals (one he said was from the Chinese Academy of Sciences).
“More shock was met when questioned about the money used to fund the study, which, judging from the extensive analysis and sequencing costs, would be extensive. Jianjui said that none of this was from the University as we was on unpaid leave, nor did it come from either of his two companies, but from himself personally.
“Despite continued questioning as to the choice of gene, he failed to give sufficient reason for this, other than that he felt these patients’ needs were a motivating factor and stated he was proud of himself for this.
“A somewhat unfortunate element about this was that the preclinical studies he had carried out were extensive but the lack of transparency (presumably in order to be “the first”) have meant that the motives and duplicitous nature of the work are felt to be all the more irresponsible.
“He is scheduled to speak tomorrow (Thursday) about “The Roadmap towards Developing Standards for Safety and Efficacy for Human Germline Gene Editing and Moral Principles” but there are doubts whether he will deliver this. The following talk will be on “Forging a Bench to Clinical Pipeline for Human Germline Editing”, it seems he has already forced one. “