基因編輯嬰兒23個疑問，賀建奎回答了什麼、迴避了什麼

圖片來源：視覺中國

11月28日中午，所有人都守在第二屆國際基因峰會的會場或直播流前，等待賀建奎的出現。（鈦媒體此前有文章詳細報道首例免疫艾滋病嬰兒誕生，中國科學家引巨大爭議和人類胚胎基因編輯之門已打開）

12:48分，這位爭議巨大的人物站到了台上。這場原本定於11:30的演講，整整推遲了一個多小時。

演講開始前，賀建奎先做了一件事：道歉。但他並沒有明確地表明道歉內容。他的原話是：

「我必須道歉，本次實驗結果在未經本次研討會同行學者審閱之前，被出乎意料地泄露了。」

賀建奎在接下來的演講中透露，該研究報告已提交給一個科學期刊進行審查。而對於已經出生的雙胞胎，賀表示，他將監測這對雙胞胎的健康情況直至18歲，並希望在其成年後爭取到她們的同意與支持。

演講之後的討論環節，賀建奎全程共被問到二十三個問題（實際上有些問題是一系列追問）。

「如何證明參與試驗的夫妻明白其中的風險」？

在回答這個問題時，賀建奎多次提到參與試驗的父母有良好的教育背景，並解釋稱，「我從第1頁到第20頁逐行逐段地解釋。他們有權在知情同意過程中提出任何問題。完成了整個知情同意後，最後我給了他們一些時間進行私下討論，這樣他們就有了一些時間以夫妻身份進行討論。他們還可以選擇把它帶回家，之後再決定。」

賀在演講中也提到：已將潛在「脫靶」風險告知給這對夫妻，讓他們自主選擇是否接受這一基因編輯過後的胚胎。

關於該試驗的資金來源，賀建奎表示其所在的公司既沒有參與項目，也沒有人員、空間和設備，「當我開始做實驗的時候，我是一所大學的教授。三年前，我開始了這項工作，當時大學還在給我發工資。醫療服務和病人的經費由我自己支付。一些測序費用是由大學的創業基金支付的。」

鈦媒體第一時間翻譯了對話全文，我們發現，若干次提問賀建奎沒有直接回答。比如這些：

你如何理解你對這些孩子的責任？最後一張幻燈片顯示你將進行後續治療。你對未來有什麼責任?

首先，什麼是對這些病人來說尤為重要的未被滿足的醫療需求？其次，你用病人而不是科學家、醫生和倫理學家所做的決定，證明了植入這些胚胎以創造人類妊娠的關鍵決定是合理的。作為科學家、醫生和獨立團體，我們有什麼責任為病人做出決定，而不是讓他們自己做出決定？

不能對胚胎進行基因編輯，這是包括中國在內的國際社會的共識。我想你知道這是一條紅線。你為什麼選擇越過這條紅線？你為什麼秘密進行這些臨床試驗？

18歲前，他們都是孩子，並沒有自主權。他們的基因型可能會影響他們的成長。這會影響他們或者他們父母的認知嗎?

一個細節是，在進行到第五個問題時，主持人打斷了問答環節。大會主席David Baltimore上台發表了一段聲明（隨後問答環節繼續）。

David Baltimore首先感謝了賀建奎的到來與對質疑作出的回應，但他仍然強調，基因編輯嬰兒是「不負責任的。」

David Baltimore 在聲明中說：「我要感謝賀博士的到來，感謝他對我們提出的問題作出的回應。我仍然認為，我們在上次會議結束時所作的陳述，在有安全確保及全球社會的普遍共識前，任何臨床基因編輯都是很不負責任的行為。我認為這不是一個透明的過程。孩子出生之後，我們才知道。我個人認為這在醫學上沒有必要性。今天早些時候聽到的關於疾病選擇的討論比為一個人提供預防艾滋病毒感染的保護要緊迫得多。我認為科學界由於缺乏透明度而缺乏自律。這些話完全是代表我自己說的。組織這次會議的委員會將舉行會議並發表聲明，但要到明天才能發表聲明。

最後一個提給賀建奎的問題是，「如果這是你的孩子，你會這樣做嗎?」

賀建奎答道：「這是一個好問題。如果是我自己的孩子面臨同樣的境況，我會先試試（try first）。」

關於此次賀建奎的現身回應，本文將分為三個部分梳理呈現：

賀建奎問答環節（共計23個問答，中英文對照）

賀建奎演講內容提煉（中英文對照）賀建奎演講PPT全文

（鈦媒體註：本文英文原文速記來自於http://diyhpl.us/wiki/transcripts/human-genome-editing-summit/2018-hong-kong/jiankui-he-human-genome-editing/，由鈦媒體編輯付夢雯、趙宇航、龐驍柳編譯整理。）

賀建奎回答的23個問題

問題一：你對其他胚胎做了什麼? 他們有被移植嗎?

What did you do with the other embryos? Were they implanted?

賀建奎：有7對夫婦，但基於目前的情況，臨床試驗暫停了。

There are seven couples but the clinical trial is on hold due to the current situation.

問題二：你從臨床試驗設計中得到了什麼反饋？團隊的規模有多大？你在哪裡獲得的批准?

What did you to get feedback on the clinical trial design? What was the scope of the team and where did you go to get approvals?

賀建奎：我首先與幾位科學家和一名醫生交談，以確定CCR5是否是推薦的。當我們有了一些數據，我在2017年的冷泉港和伯克利基因組編輯會議上展示了這些數據。我得到了積極的反饋，也收到了一些批評和建設性的建議。我不僅與科學家交談，還與美國頂尖的倫理學家，如斯坦福大學和哈佛大學的倫理學家交談。我還向來訪的科學家展示了我的數據。作為參考，我們起草了一份同意書。這份同意書由一位美國教授審閱。隨後我們進行了後續計劃。

I first talked with a couple of scientists and a doctor to find out whether CCR5 was the one recommended. Once we had some data, I presented at Cold Spring Harbor in 2017 and also at the Berkeley genome editing conference. Some of the others in that conference too. I received positive feedback and also some criticism and also some constructive advice. I continued to talk with not just scientists but also the top ethicists in the United States such as at Stanford and Harvard. I also showed my data to visiting scientists. When I started a clinical trial for the informed consent, we.. as a reference.. and drafted a consent form. The letter was reviewed by a US professor. ... Subsequent... follow-on plan.

問題三：有多少人審查了知情同意書並認為它是合適的?

How many people reviewed the informed consent and felt it was appropriate?

賀建奎：大約四個人。

About four people. ...

問題四：在知情同意書問題上，是由第三方獨立方與患者對話，還是您的團隊直接參与了這個過程?

On the informed consent issue, was that an independent person talking to the patient, or was your team involved in that process directly?

賀建奎：團隊成員先去找志願者談了2個小時，1個月後，志願者來到深圳，我親自帶他們去找另一位教授，並讓他們知情同意。

Team member went to talk to the volunteer first for 2 hours, and then after 1 month, the volunteers came to Shenzhen and I personally took them to another professor and gave them informed consent.

接著問：所以你直接參与了?

So you were directly involved?

賀建奎：我參與了。同時，我也告訴了他們脫靶等信息。

I was involved. Also, I brought them the information about off-targets and so on.

問題五：你是如何招募到這些夫婦參與研究的？是通過私人關係嗎？你的機構發布公告了嗎？如何招募這些特殊的夫婦?

How did you recruit these couples into your study? Was it done by personal connections? Did your institution put out a release? How was recruitment done of these particular couples?

賀建奎：這是由一個艾滋病志願者組織平台招募的。

It was by an HIV/AIDS volunteer group.

（大會主席David Baltimore發表了一段聲明）

問題六：同意David Baltimore所說的，感謝你在如此不同尋常的境況下還來到這裡。首先，我認為這些女孩沒有未被滿足的醫療需求。父親是HIV陽性，母親是HIV陰性。你已經對精子進行了清洗，因此已經可以產生未受感染的胚胎，這些胚胎可以孕育出未受感染的嬰兒。

你能描述一下什麼是未被滿足的醫療需求嗎，不是一般意義上的我們所知道的HIV。但什麼是對這些病人來說尤為重要的未被滿足的醫療需求？其次，你用病人而不是科學家、醫生和倫理學家所做的決定，證明了植入這些胚胎以創造人類妊娠的關鍵決定是合理的。作為科學家、醫生和獨立團體，我們有什麼責任為病人做出決定，而不是讓他們自己做出決定？非常感謝。

I"d like to echo David Baltimore"s comments thanking you for coming here under some unusual circumstances. First, I don"t see the unmet medical need for these girls. The father is HIV positive and the mother is HIV negative. You already did sperm washing, and thus you already could generate uninfected embryos that could give rise to uninfected babies. Could you describe what is the unmet medical need, not of HIV in general which I think we all appreciate, but what is the unmet medical need for these patients in particular? Second, you justified the critical decision of implanting these embryos to create a human pregnancy with the decisions made by the patients rather than made by the scientists, doctors and ethicists. Can you comment on what is our responsibility as scientists and doctors and independent communities to make that decision for the patients rather than allowing them to make that decision seemingly on their own? Thank you very much.

賀建奎：第一個問題是CCR5是否是一個未被滿足的醫療需求。我相信這不僅僅是針對這個案例，而是針對千百萬兒童。他們需要這種保護。目前還沒有艾滋病毒疫苗。我個人接觸過一些艾滋病患者，那裡30%的村民感染了艾滋病。他們甚至不得不把孩子交給親戚和叔叔撫養，只是為了防止潛在的傳播。對於這個具體的案例，我感到很自豪。實際上是我感到最自豪的，因為他們對生活失去了希望。但有了這種保護，他發了一條信息，說他將努力工作，賺錢，並照顧他的兩個女兒和他的妻子一輩子。

The first question was whether CCR5 is an unmet medical need. I actually believe that this is not just for this case, but for millions of children. They need this protection. HIV vaccine is not available. I personally experience with some people in AIDS where 30% of a village people are infected. They even have to give their children to relatives and uncles to raise just to prevent potential transmission. For this specific case, I feel proud. I feel proudest, because they had lost hope for life. But with this protection, he sent a message saying he will work hard, earn money, and take care of his two daughters and his wife for this life.

問題七：在我們討論第二個問題之前，你說過沒有其他植入。需要說明的是，你的臨床試驗中是否還有其他進行中的基因組編輯?

Before we get to the second question, you said there has been no other implantations. Just to be clear, are there any other pregnancies with genome editing as part of your clinical trials?

賀建奎：還有一個，另一個還在懷孕早期階段。

There is another one, another potential pregnancy.

接著問：你說的是早期？所以是生化妊娠階段？

You said early stage? So chemical pregnancy?

賀建奎：是的。

Yes.

問題八：我有兩個關於倫理的問題。你能不能放慢一點談談你說過的制度倫理過程。第二部分是展望未來——你如何理解你對這些孩子的責任？最後一張幻燈片顯示你將進行後續治療。你對未來有什麼責任？

I have a two-part ethical question. Could you slow down a little bit and talk about the institutional ethics process that you said you went through. Looking to the past. The second part is looking to the future- how do you understand your responsibility to these children? Your last slide indicated that you would be doing follow-up treatment. What is your responsibility towards the future as well?

賀建奎：你的朋友、親戚可能患有一種基因疾病，這些人需要幫助。有數百萬家庭患有遺傳疾病或接觸傳染病。如果我們有技術，並能使其可用，那麼這將對人們有助益。當我們談論未來的時候，首先它是透明、開放的，我會分享我所積累的知識給社會和世界。下一步做什麼則由社會決定。

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.

問題九：那麼孩子呢？這不是一個抽象的問題。未來這些孩子出生，你如何理解你對他們的責任?

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？

這與媒體的提問有關。你會在未來公布露露和娜娜的身份嗎？如果個人方面保密，它會有影響嗎？在這種情況下，你必須保護病人的身份。全世界都想知道，他們會想知道他們是否健康，這種方法是否有任何消極或積極的後果。你會怎麼處理這件事?

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?

賀建奎：在公共場合透露HIV陽性患者的身份是違反中國法律的。其次，對於這對夫婦來說，他們的婚姻受到了嚴密的監控。我將建議數據應該是開放的，且可向專家提供。

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.

問題十：當你開始這個實驗時，你是如何說服孩子父母的？你有沒有告訴他們如何避免孩子感染艾滋病？你是怎麼做倫理審查的？過程如何？有多少機構參與?

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?

賀建奎：第一個問題是我們如何說服病人。他們都是有良好的教育背景的志願者。他們有很多關於艾滋病藥物和其他治療方法的信息，甚至還讀過一些最新的研究文章。他們共同處於可接觸到艾滋病治療最新進展的社交網路中。志願者得到了知情同意，他們已經非常了解基因編輯技術及其潛在的影響和好處。我認為這是一種信息的相互交換。

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.

問題十一：回到透明度問題上，您是否願意將知情同意書和您的稿件發布在一個公共論壇上，以便可以在biorxiv.org或知情同意書公共網站上進行審閱，以便業內能夠詳細閱讀您所做的工作?

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?

賀建奎：是的，事實上知情同意書已經在網站上了。搜索我的名字，你就會找到它。第二，對於知情同意書，在我起草的時候，大約有10個人看過，其中有些來自美國。我會發給幾個人，讓他們來評論。我可能(不?)提交到biorxiv。在發布到biorxiv之前，應該先進行同行評審。

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.

問題十二：你接受了那個建議，但你現在會改變主意嗎？情況已經發生了變化，人們迫切需要知道你做了些什麼。我想這不是一個問題，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.

問題十三：我對知情同意流程非常感興趣。你說有一份同意書你很樂意和大家分享，有四個人審閱了這份同意書，和病人進行了十分鐘的談話。在英國，普通大眾的平均閱讀年齡在10歲左右。絕大多數英國人不理解基因組這個詞。我對那次談話中發生的事很感興趣。你如何解釋風險？他們明白的證據是什麼?

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?

賀建奎：不是10分鐘，我說了1小時10分鐘。事件發生在一間會議室，夫婦倆在那裡會面，還有兩名觀察員。在知情同意之前，這對夫婦已經拿到了列印好的複印件。

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.

接著問：他們能讀懂它們嗎?

Could they read them and understand them?

賀建奎：是的。他們受過很好的教育。

Yes. They were very well educated.

賀建奎：是的。我從第1頁到第20頁逐行逐段地解釋。他們有權在知情同意過程中提出任何問題。完成了整個知情同意後，最後我給了他們一些時間進行私下討論，這樣他們就有了一些時間以夫妻身份進行討論。他們還可以選擇把它帶回家，之後再決定。

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.

接著問：團隊成員是否接受過知情同意的培訓？這是第一次嗎？他們受過這樣的訓練嗎？

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

賀建奎：有兩輪知情同意。第一輪是非正式的，參與的是我的實驗室的一個小組成員。第二個比較正式，跟我一起。當我們起草知情同意書時，我閱讀了NIH關於知情同意書的指南。

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.

問題十四：有媒體提問，能否解釋一下這項工作的資金來源?

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

賀建奎：當我開始做這實驗的時候，我是一所大學的教授。三年前，我開始了這項工作，當時大學還在給我發工資。醫療服務和病人的經費由我自己支付。一些測序費用是由大學的創業基金支付的。

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.

問題十五：所以沒有來自行業或公司的資金？我想說得更清楚一點，你在一家公司工作，但那不是這個項目的一部分？

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?

賀建奎：我的公司既沒有參與這個項目，也沒有人員、空間和設備。

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

問題十六：這些家庭付了錢嗎?有資金利益交換嗎?

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

賀建奎：我們在知情同意書中解釋說，我們支付了所有的醫療費用，他們不會因此得到錢。

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

問題十七：誰應該對這些病人負責？如何提供醫療服務？由於受到嚴格的監督，你會如何評價他們的心理健康？接種疫苗和神經發育結果如何？

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?

賀建奎：知情同意書提供了定期血液檢測和其他醫療程序的信息。這些都可以在知情同意書中找到。

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

問題十八：關於脫靶評估。你提到你做了單細胞全基因組測序。據我所知，目前還沒有可靠成熟的技術來進行單細胞全基因組測序。你是怎麼做到的?還有一個共識是不允許……對胚系基因進行基因組編輯。這是包括中國在內的國際社會的共識。我想你知道這是一條紅線。你為什麼選擇越過這條紅線？你為什麼秘密進行這些臨床試驗？

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?

賀建奎：首先，對於脫靶測序，在植入前，我們只能從胚細胞中活體檢視3 - 5個細胞。然後，我們對單個細胞進行擴增。以目前的技術水平，我們可以得到單細胞95%或80-85%的基因組覆蓋率。可能會有脫靶效應缺失，但這不只是看這個胚胎，我們有很多脫靶效應，通過對他們的總體觀察，我們可以了解脫靶情況。

First, regarding off-target by sequencing. Before implantation, we can biopsy only 3 to 5 cells from the blastocyte. From that, we amplify for single cell. We were able to get maybe 95% genome coverage for single cell. Or 80-85% coverage, current state of the art. There might be off-target effects missing, but it"s not just looking at this embryo, we had many of them, and by many of them together we can understand how much off-target happens.

問題十九：問題的第二部分是，為什麼要這麼保密尤其是當你知道科學家們普遍認為我們不應該這麼做的時候？政府稱是你違反了法律，如果政府知道你的計劃，他們可能會說你不能做。但你還是做了。

The second part of the question, was, why so much secrecy around this particularly when you know the general feeling among the scientists is that we shouldn"t be doing this? Why so much secrecy from the Chinese authorities? You know the accusation now is that you have broken the law. If you had involved the Chinese authorities, they might have said you can"t do it. That"s how it seems, you went ahead anyway.

賀建奎：我一直在科學界工作。我在伯克利冷泉港和一個亞洲會議上發表了講話。我向他們徵求過反饋。我繼續從事臨床試驗，那時我也就倫理問題諮詢過美國的專家。

I have been engaged in the scientific community. I spoke at Cold Spring Harbor, Berkeley, and at an Asian conference. I consulted them for feedback. I moved on to clinical trials, and at that time I also consulted with experts in the United States about ethics.

問題二十：大家提出了許多科學問題。但也有很多關乎這兩個女孩。經過事情的徹底審查後，也許會有適當的討論。所以這對姐妹，一個是抗HIV感染的，像你所強調的那樣，這是其父母至少是父親想要的結果。在家庭中，這兩個女兒會得到不同的對待嗎？另一方面，一個女孩對艾滋病毒感染是難以治癒的——她現在會成為理想的生育對象嗎？這是否會改變她在婚姻和孩子方面的整體動力，因為配偶可能對家庭內部的這種突變特別在意？

There were many scientific questions raised. But there"s also a very personal dynamic for these two girls. If things had been thoroughly vetted, there might have been a proper discussion. So there are two sisters, and one is refractory to HIV infection and that was a desired outcome from the parents or at least the father you specifically highlighted. Within the family dynamic, are these daughters going to be treated differently? The othe rside of that is the one girl that is refractory to HIV infection- is she now going to be desirable for breeding? Will this change her whole dynamic in terms of marriage and children because a spouse might be particularly interested in getting this mutation within the family? Even this very simple thing, with these two girls being different and the family and now this being something of an enhancement preventative trait not just a disease correction but now something new that could be introduced in the population.

賀建奎：我有深刻思考過這個問題。這也是為什麼我發表了基因編輯的五個編碼值。首先是尊重孩子的自主權。這些工具不應該被用來控制他們的未來或者對他們未來的選擇做出期望。他們應該有選擇的自由。第二點則是鼓勵孩子們發掘自己的全部潛能，追求自己的生活。

I have reflected deeply on this. This is why I published the five code value for gene editing. First is respect for children"s autonomy. These tools should not be used to control their future or make expectations about their future choices. They should be given the freedom of choice. The second one is-- the children, encourage them to explore their full potential and the pursuit of their own life.

問題二十一：18歲前，他們都是沒有自主權的孩子。他們的基因型可能會影響其成長。這會影響他們或者他們父母的認知嗎?

For 18 years though, they are children and they do not have that autonomy. Their genotype might quite affect their upbringing. Will this effect their perception, or their parents?Their parents will know they were edited.

賀建奎：我不知道如何回答這個問題。

I don"t know how to answer this question.

問題二十二：我被告知我們需要馬上結束這個環節。我想用兩個來自媒體的問題來結束。一些問題已經反覆被提及。你對現在這樣的公眾反應有預知嗎？即使你已經成功地通過審查並發表論文，在當時也會有很多麻煩。你預料到現在的狀況了嗎?

I"ve been told we have to stop this session soon. I want to finish off with two questions from the media, some that have been repeated several times. Did you expect all this reaction? Even if you had managed to succeed in having the paper reviewed and published first, there would have been a lot of fuss at that time as well. Did you anticipate this?

賀建奎：那是因為消息走漏了。我最初的想法是基於美國的調查，或英國的道德聲明，或中國的研究，這些訊息給我們一個信號，大多數公眾支持人類基因組編輯用於治療，包括艾滋病的預防。

It"s because the news leaked out. My original thinking was based on the survey of the United States or the US or the British ethics statement or the Chinese study that gave us the signal that the majority of the public is supporting human genome editing for treatment including HIV prevention.

問題二十三：最後一個問題是，如果這是你的孩子，你會這樣做嗎?

The very final question is, if this was going to be your baby, would you have gone ahead with this?

賀建奎：這是一個好問題。如果是我自己的孩子面臨同樣的境況，我會先試試。

That"s a good question. If it was my baby, with the same situation, yes I would try first.

主持人：感謝賀博士出席。

I think we should thank Dr. He for appearing here.

演講內容關鍵點節選

賀建奎在演講開始前先進行了道歉，但並沒有明確地表明道歉內容。他表示：「我必須道歉，本次實驗結果在未經本次研討會同行學者審閱之前，被出乎意料地泄露了。」

原文如下：First, I must apologize. This leaked unexpectedly, taking away from the community before presenting in a scientific venue, and without the peer review process engaged before this conference.

不過，他也透露，該研究報告已提交給一個科學期刊進行審查。

賀建奎介紹到，他們的實驗數據聚焦於人類和猴子。雖然艾滋病防治已經取得了很大進展，但目前，新感染率仍然比聯合國目標高出3倍。在若干國家，特別是發展中國家，艾滋病仍然是十大死亡原因之一。

特別是對於母親帶有HIV的兒童來說，在生命最初幾個月感染艾滋病的風險要更高。而天然CCR5突變（Natural CCR5 mutation）賦予了強烈的HIV1抗性。在一些歐洲國家，高達10％的人口可以獲得對艾滋病毒的天然保護。 它可以預防HIV感染。CCR5基因是研究最多的變異之一，也是最容易理解的基因之一。

賀建奎表示，他和他的團隊首先在小鼠上做了不同細胞的實驗，在共同行為評估中，沒有顯示出差異。隨後他們開始評估該技術是否可以應用於人類（We then set out to assess whether sgRNA could be designed for CCR5 in human. ）。

賀建奎在演講中給出一系列研究數據（詳見文末PPT）。

特別是針對脫靶效應，在胚胎階段，任何脫靶都會造成非常重要的後果，甚至可能會影響到全身健康。

賀建奎表示，他們採用在植入前通過胚胎的單細胞全基因組測序方法來評估脫靶。使用擴增方法來最小化假陽性率和無偏覆蓋率。賀建奎解釋道，雖然其他實驗室使用了相同的方法，但賀的試驗通過對親本基因組進行測序向前邁出了一步，找到存在於親本細胞中但不存在於參考測序基因組中的風險位點。

原文如下：We assessed off-target by single cell whole genome sequencing of embryo, prior to implantation. We used an amplification method to minimize the false positive rate, and for unbiased coverage. Other labs have used the same approach, but we take it a step forward by sequencing the parent genome, to find risk sites that exist in the parent cells but not in the reference sequenced genome.

賀建奎表示，雖然，在實驗中，基因測序發現了一個潛在的脫靶風險，但是距離其他的基因都很遠，「之前我們發現過這個問題，也告訴過嬰兒的父母」，賀建奎說道，「我們提醒了這對父母選擇不植入（胚胎）離開實驗，還是選擇植入胚胎，這對父母選擇接受並開始懷孕。」

原文如下：The parents were informed of the implication of this. We reminded them of the option to leave the trial without implantation, or to choose the embryos. The couple elected to implant this embryo to start a two-embryo pregnancy.

並且嬰兒出生後，Sanger測序和深度測序均未檢測到PGD期間觀察到的基因間脫靶，全基因組測序也未觀察到脫靶。

賀建奎表示，計劃在未來18年內對這對雙胞胎進行監測，並希望他們在成年後能夠同意進行繼續監測和支持。（本文首發鈦媒體，作者/付夢雯 趙宇航，鈦媒體編輯龐驍柳、王糈對本文亦有貢獻）

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