Gene-editing baby controversy: Chinese researcher explains details of medical trial
28th November 2018
Excerpt from news video (accompanies article on the website):
Anna Middleton: “The process of taking consent is very, very detailed. It’s very patient focused. It gives a lot of time for answering questions and also taking time out to consider. I just don’t know how he explained the risks to these families and really, whether they actually understood.”
Excerpt from article:
He also described the process of convincing the parents, a question that draws much attention.
As these volunteers all have a good educational background — they know about HIV, the drug, alternative approaches, and even the latest published research, said the researcher. When the volunteers came to the informed consent, they already understood “quite well” the genetic technology, the side effects or potential benefit.
“I think it’s a mutual exchange of information that let the volunteer make the decision.”
The informed consent is already on the website and can be found by searching his name, according to He.
For achieving it, he said that he had a conversation that “lasted one hour and 10 minutes.”
“It happened in a conference room with couples and two observers besides himself. The printed copies were given to the couple before the informed consent.”
“They are well educated,” said He, adding that he explained from page one to page 20 line by line to the volunteers and they have the right to ask any questions, and make the decision on-site or later.
Two rounds were carried out for the informed consent, separately by his team member, an informal talk lasting two hours, and a formal one by himself.
When asked about the source of the funding, he stated that the pre-research was supported by the university where he worked as a professor, and when the experiment moved to clinical trials, He covered all the expenses.
It is said He has several companies, but he claimed that neither of his companies was involved in this study.
The families who participated in the experiment are not required to pay medical expenses, or receive much extra money from it, He stated.
He also denied that he performed the research in secret. “I have been involved in the scientific community,” and consulted institutes and experts to get feedback from them. “When I moved on to clinical trials, I also consulted with several experts in the United States about ethics and also science.”
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