基因编辑婴儿23个疑问，贺建奎回答了什么、回避了什么丨钛媒体万字实录

I am very interested in informed consent process. You said there's a consent form that you are happy to share, it was reviewed by four people, and a ten minute conversation that happened with the patients. In the UK, the average reading age of the general public is around age 10. The vast majority of the UK public doesn't understand the word genome. I'm quite interested what happened in that conversation. How did you explain the risks? What was the evidence that they understood?

贺建奎：不是10分钟，我说了1小时10分钟。事件发生在一间会议室，夫妇俩在那里会面，还有两名观察员。在知情同意之前，这对夫妇已经拿到了打印好的复印件。

I did not say 10 minutes. I said 1 hour and 10 minutes. It happened in a conference room where the couples met and two observers. Printed copies were given to the couple before informed consent.

接着问：他们能读懂它们吗?

Could they read them and understand them?

贺建奎：是的。他们受过很好的教育。

Yes. They were very well educated.

贺建奎：是的。我从第1页到第20页逐行逐段地解释。他们有权在知情同意过程中提出任何问题。完成了整个知情同意后，最后我给了他们一些时间进行私下讨论，这样他们就有了一些时间以夫妻身份进行讨论。他们还可以选择把它带回家，之后再决定。

Yes. I explained from page 1 to page 20, line by line, paragraph by paragraph. And they had the right to ask any question during this informed consent process. Once we went through the entire informed consent, at the end I gave them time to private discussion so that they had some time to discuss as a couple. They also had the choice to decide to take it home and decide later.

接着问：团队成员是否接受过知情同意的培训？这是第一次吗？他们受过这样的训练吗？

Were any of the team members trained in taking consent? Was this the first time? Were they trained at doing this?

贺建奎：有两轮知情同意。第一轮是非正式的，参与的是我的实验室的一个小组成员。第二个比较正式，跟我一起。当我们起草知情同意书时，我阅读了NIH关于知情同意书的指南。

I had two rounds of informed consent. The first round was informal and a team member from my lab. Just two hours to talk with them. The second one was more formal, and with me. I read guidelines from the NIH on informed consent when we drafted the informed consent.

问题十四：有媒体提问，能否解释一下这项工作的资金来源?

Question from the media, could you please explain the source of the funding for this work?

贺建奎：当我开始做这实验的时候，我是一所大学的教授。三年前，我开始了这项工作，当时大学还在给我发工资。医疗服务和病人的经费由我自己支付。一些测序费用是由大学的创业基金支付的。

When I started this, I was a professor at a university. Three years ago, I began this work. I began that when the university was paying my salary. Medical care and expense for the patients was paid by myself. Some of the sequencing costs was covered by startup funding in the university.

问题十五：所以没有来自行业或公司的资金？我想说得更清楚一点，你在一家公司工作，但那不是这个项目的一部分？

So there was no funding from industry or a company? Just to make it clear, you have involvement in a company, but that was not involved in this project?

贺建奎：我的公司既没有参与这个项目，也没有人员、空间和设备。

Neither my company was involved in this project, neither people space or equipment.

问题十六：这些家庭付了钱吗?有资金利益交换吗?

Did the families pay anything or did they pay anything? Was there any exchange of money?

贺建奎：我们在知情同意书中解释说，我们支付了所有的医疗费用，他们不会因此得到钱。

We explained in the informed consent that we paid all the medical expense and they would not receive money for this.

问题十七：谁应该对这些病人负责？如何提供医疗服务？由于受到严格的监督，你会如何评价他们的心理健康？接种疫苗和神经发育结果如何？

Who should be responsible for these patients? How will medical care be provided? How will you evaluate their mental health due to strict supervision? What about vaccinations and neurodevelopmental outcomes?

贺建奎：知情同意书提供了定期血液检测和其他医疗程序的信息。这些都可以在知情同意书中找到。

.. informed consent provided information about regular blood tests and other medical procedures. It's all available in the informed consent document.

问题十八：关于脱靶评估。你提到你做了单细胞全基因组测序。据我所知，目前还没有可靠成熟的技术来进行单细胞全基因组测序。你是怎么做到的?还有一个共识是不允许……对胚系基因进行基因组编辑。这是包括中国在内的国际社会的共识。我想你知道这是一条红线。你为什么选择越过这条红线？你为什么秘密进行这些临床试验？

Regarding off-target assessment. You mentioned you did single cell whole genome sequencing. As far as I know, there is no reliable or mature technology to conduct single cell whole genome sequencing. So how did you do this? There's also consensus to not allow ... to conduct genome editing on germlines. This is the consensus of the international community including the Chinese community. I assume you were aware this was a red line. Why have you chosen to cross this red line? Why did you perform these clinical trials in secret?

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