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

贺建奎：你的朋友、亲戚可能患有一种基因疾病，这些人需要帮助。有数百万家庭患有遗传疾病或接触传染病。如果我们有技术，并能使其可用，那么这将对人们有助益。当我们谈论未来的时候，首先它是透明、开放的，我会分享我所积累的知识给社会和世界。下一步做什么则由社会决定。

Do you see your friends, your relatives who may have-- a genetic disease-- the way I see it, those people need help. There are millions of families with inherited diseases or or exposure to infectious disease. If we have the technology and can make it available, then this will help people. When we talk about the future, first it's a transparent open and share what knowledge I accumulate to society and to the world. It is up to society to decide what to do next.

问题九：那么孩子呢？这不是一个抽象的问题。未来这些孩子出生，你如何理解你对他们的责任?

What about the actual children? It was not an abstract question. Going forward with these born children, how do you understand your responsibility to them？

这与媒体的提问有关。你会在未来公布露露和娜娜的身份吗？如果个人方面保密，它会有影响吗？在这种情况下，你必须保护病人的身份。全世界都想知道，他们会想知道他们是否健康，这种方法是否有任何消极或积极的后果。你会怎么处理这件事?

It relates to questions from the media. Will you publish the identity of Lulu and Nana in the future? Will it effect things if the individuals remain secret? You really have to protect patient identity in this case. The world wants to know, they will want to know whether they are healthy, whether the method had any negative or positive consequences. How will you deal with this?

贺建奎：在公共场合透露HIV阳性患者的身份是违反中国法律的。其次，对于这对夫妇来说，他们的婚姻受到了严密的监控。我将建议数据应该是开放的，且可向专家提供。

It is against Chinese law to disclose the identity of HIV positive people in public. Second, for this couple, it's under careful monitoring. I will propose that the data should be open and avaliable to experts.

问题十：当你开始这个实验时，你是如何说服孩子父母的？你有没有告诉他们如何避免孩子感染艾滋病？你是怎么做伦理审查的？过程如何？有多少机构参与?

How did you convince the parents when you started this expeirment? Did you tell them about alternatives to avoid AIDS infection of their child? And how did you do the ethical review? How was the process? How many institutions?

贺建奎：第一个问题是我们如何说服病人。他们都是有良好的教育背景的志愿者。他们有很多关于艾滋病药物和其他治疗方法的信息，甚至还读过一些最新的研究文章。他们共同处于可接触到艾滋病治疗最新进展的社交网络中。志愿者得到了知情同意，他们已经非常了解基因编辑技术及其潜在的影响和好处。我认为这是一种信息的相互交换。

So the first question regarding how we convinced the patient. These were volunteers. They all have good education background. They had a lot of information about HIV drugs and other approaches, and even some of the latest research articles published. They were usually in a social network together where the latest advancements in HIV treatment is available. The volunteers were given informed consent, and they already understood quite well about the gene editing technology and the potential effects and benefits. I think it's a mutual exchange of information.

问题十一：回到透明度问题上，您是否愿意将知情同意书和您的稿件发布在一个公共论坛上，以便可以在biorxiv.org或知情同意书公共网站上进行审阅，以便业内能够详细阅读您所做的工作?

Back to transparency, would you be willing to post the informed consent and your manuscript in a public forum so it could be reviewed such as on biorxiv.org or a public website for informed consent so that the community can read in detail what you have done?

贺建奎：是的，事实上知情同意书已经在网站上了。搜索我的名字，你就会找到它。第二，对于知情同意书，在我起草的时候，大约有10个人看过，其中有些来自美国。我会发给几个人，让他们来评论。我可能(不?)提交到biorxiv。在发布到biorxiv之前，应该先进行同行评审。

Yes, actually the informed consent is already on the website. Search my name and you will find it. Second, for the manuscript, when I drafted the manuscript there are already about 10 people-- a few in the US-- have been editing (reviewing?) my script-- I will send several to give comments. I might (not?) submit to biorxiv. It should go to peer review first before being posted to biorxiv.

问题十二：你接受了那个建议，但你现在会改变主意吗？情况已经发生了变化，人们迫切需要知道你做了些什么。我想这不是一个问题，只是需要思考。

You took that advice, but would you change your mind now? The circumstances have changed, and there is big demand to know what you have done. That's not a question I suppose, but just something to think about.

问题十三：我对知情同意流程非常感兴趣。你说有一份同意书你很乐意和大家分享，有四个人审阅了这份同意书，和病人进行了十分钟的谈话。在英国，普通大众的平均阅读年龄在10岁左右。绝大多数英国人不理解基因组这个词。我对那次谈话中发生的事很感兴趣。你如何解释风险？他们明白的证据是什么?

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