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定制婴儿的伦理难题

The ethical dilemma of designer babies | Paul Knoepfler

所以如果我们帮你定制一个婴儿
So what if I could make for you
那会发生什么事?
a designer baby?
要是即将身为父母的你
What if you as a parent-to-be
和身为科学家的我 决定一起完成呢?
and I as a scientist decided to go down that road together?
要是我们没这样做呢?
What if we didn’t?
如果我们认为“这想法太糟糕了”
What if we thought, “That’s a bad idea,”
但我们的家人 朋友 同事
but many of our family, friends and coworkers
很多人都做了这样的决定 那又会如何呢?
did make that decision?
让我们快进到15年之后
Let’s fast-forward just 15 years from now.
假设现在是2030年
Let’s pretend it’s the year 2030,
你已经为人父母
and you’re a parent.
你的女儿玛丽安就坐在你的身边
You have your daughter, Marianne, next to you,
2030年的时候 我们称她为自然人
and in 2030, she is what we call a natural
因为她没有被基因改造过
because she has no genetic modifications.
因为你和你的伴侣所做出的决定
And because you and your partner consciously made that decision,
让你们在很多社交场合都被看不起
many in your social circle, they kind of look down on you.
别人认为你们是反对新科技或是排斥科技产品的人
They think you’re, like, a Luddite or a technophobe.
你女儿最好的朋友珍娜就住在你们的隔壁
Marianne’s best friend Jenna, who lives right next door,
她有着完全不同的故事
is a very different story.
她是一个基因改造的孩子 而且升级了很多功能
She was born a genetically modified designer baby with numerous upgrades.
是的 升级
Yeah. Upgrades.
而这些改造是经由一种
And these enhancements were introduced
全新的基因改造技术完成的
using a new genetic modification technology
它有一个好笑的名字CRISPR
that goes by the funny name CRISPR,
你知道 有点像薯片的感觉
you know, like something’s crisp,
这是CRISP
this is CRISPR.
珍娜的父母聘请科学家做这件事
The scientist that Jenna’s parents hired to do this
花了他们几百万美元
for several million dollars
因为他们要在一整个胚胎上使用CRISPR技术
introduced CRISPR into a whole panel of human embryos.
之后还要进行基因检测
And then they used genetic testing,
并且确定他们选出来的小胚胎 也就是珍娜的胚胎
and they predicted that that little tiny embryo, Jenna’s embryo,
是当中最棒的一个
would be the best of the bunch.
现在珍娜已经长大
And now, Jenna is an actual, real person.
她正坐在你家客厅的地毯上
She’s sitting on the carpet in your living room
和你的女儿玩耍
playing with your daughter Marianne.
你们两家已经认识好几年了
And your families have known each other for years now,
你们都很清楚
and it’s become very clear to you
珍娜很优秀
that Jenna is extraordinary.
她聪明绝顶
She’s incredibly intelligent.
你要是对自己诚实的话就会承认 她要比你聪明
If you’re honest with yourself, she’s smarter than you,
她才5岁
and she’s five years old.
她漂亮 高挑 又有运动细胞
She’s beautiful, tall, athletic,
还有一堆说不完的优点
and the list goes on and on.
事实上 新的一代都是珍娜
And in fact, there’s a whole new generation
这样的基因改造的孩子
of these GM kids like Jenna.
到目前为止 看起来
And so far it looks like
他们要比他们父母的一代
they’re healthier than their parents’ generation,
比你这一代更健康
than your generation.
他们医疗照顾的成本也很低
And they have lower health care costs.
他们在健康条件方面 对疾病是免疫的
They’re immune to a host of health conditions,
包括艾滋病及其他基因疾病
including HIV/AIDS and genetic diseases.
听起来相当完美
It all sounds so great,
但是有一天你难免会有一种不安的感觉
but you can’t help but have this sort of unsettling feeling,
一种觉得珍娜不太对劲的感觉
a gut feeling, that there’s something just not quite right about Jenna,
你对你见过的其他基因改造孩子也有同样的感觉
and you’ve had the same feeling about other GM kids that you’ve met.
这周稍早你读报纸的时候
You were also reading in the newspaper earlier this week
有一篇关于基因改造孩子的研究
that a study of these children who were born as designer babies
研究表明 他们可能出现了一些问题
indicates they may have some issues,
比如越来越好斗 自恋
like increased aggressiveness and narcissism.
但是你脑袋里立刻想到的是
But more immediately on your mind
你从珍娜一家听到的消息
is some news that you just got from Jenna’s family.
珍娜很聪明
She’s so smart,
她现在要去特殊学校上学了
she’s now going to be going to a special school,
她的学校完全不同于你女儿的学校
a different school than your daughter Marianne,
这件事让你们的家庭陷入了混乱
and this is kind of throwing your family into a disarray.
玛丽安一直在哭
Marianne’s been crying,
昨晚你跟你女儿在床上道晚安的时候
and last night when you took her to bed to kiss her goodnight,
她问你:“爸爸 我和珍娜不再是朋友了么?”
she said, “Daddy, will Jenna even be my friend anymore?”
所以现在 我说的是2030年想象出来的情景
So now, as I’ve been telling you this imagined 2030 story,
我有一种感觉 我可能让你们中的一些人
I have a feeling that I may have put some of you
觉得这像是科幻情节 对吧?
into this sci-fi frame of reference. Right?
你觉得你正在读一本科幻小说
You think you’re reading a sci-fi book.
或许 像是万圣节前夕的场景
Or maybe, like, in Halloween mode of thinking.
但是从现在的15年起
But this is really a possible reality for us,
这真的有可能发生
just 15 years from now.
我是一位干细胞研究人员
I’m a stem cell and genetics researcher
我已经可以看到CRISPR这项技术
and I can see this new CRISPR technology
潜在的影响力
and its potential impact.
而我们也许会在那个真实的情境中找到自己
And we may find ourselves in that reality,
而这取决于我们今天所做的决定
and a lot will depend on what we decide to do today.
如果你仍旧认为这有点科幻
And if you’re still kind of thinking in sci-fi mode,
那你想一下今年稍早 科学界发生的重大事件
consider that the world of science had a huge shock earlier this year,
大部分人都不知道的这件事
and the public largely doesn’t even know about it.
几个月前 中国的研究人员
Researchers in China just a few months ago
发布消息称 他们已经创造出人类基因改造胚胎
reported the creation of genetically modified human embryos.
这是历史上的第一次
This was the first time in history.
他们就是运用CRISP这项技术
And they did it using this new CRISPR technology.
虽然还不完美
It didn’t work perfectly,
但是我认为 他们已经揭开了潘多拉盒 秘密了
but I still think they sort of cracked the door ajar on a Pandora’s box here.
我相信已经有人要用这项技术
And I think some people are going to run with this technology
尝试做出定制儿童
and try to make designer babies.
现在 在我继续说明之前 你们当中可能有人要举手说
Now, before I go on, some of you may hold up your hands and say,
“停 保罗 等一下
“Stop, Paul, wait a minute.
这不是不合法的么?
Wouldn’t that be illegal?
你不能不管法律 执意要创造一个定制婴儿吧”
You can’t just go off and create a designer baby.”
事实上 从某种程度上来说 你是对的
And in fact, to some extent, you’re right.
在一些国家 你不能做这件事
In some countries, you couldn’t do that.
但是在许多国家 包括我的国家美国
But in many other countries, including my country, the US,
事实上对此还没有明确的法律 从理论上来说 这是可行的
there’s actually no law on this, so in theory, you could do it.
今年 这个领域还发生了另外一件事
And there was another development this year that resonates in this area,
这件事就发生在离这不远的英国
and that happened not so far from here over in the UK.
谈到人类的基因改造问题
And the UK traditionally has been the strictest country
英国传统上还是个保守的国家
when it comes to human genetic modification.
在英国 那是不合法的
It was illegal there,
但是几个月前
but just a few months ago,
他们在这条规则上制定了一项豁免条款
they carved out an exception to that rule.
他们通过了一项新的法律
They passed a new law
可有条件前提下允许制造基因改变人类
allowing the creation of genetically modified humans
只要你有预防类似这样罕见基因疾病的崇高目的
with the noble goal of trying to prevent a rare kind of genetic disease.
但是我依然认为 这些综合事件 目的都是强迫我们
But still I think in combination these events are pushing us
接受人类的基因改造
further towards an acceptance of human genetic modification.
所以我一直在谈CRISPR这项技术
So I’ve been talking about this CRISPR technology.
什么是真正的CRISPR?
What actually is CRISPR?
如果你想象一下我们都是熟悉的改造生物
So if you think about the GMOs that we’re all more familiar with,
比如基因改良的番茄 小麦
like GMO tomatoes and wheat
诸如此类
and things like that,
这项技术的原理
this technology is similar to the technologies
就跟我们基因改造食物的原理类似
that were used to make those,
但是它表现得更好
but it’s dramatically better,
更便宜 更快
cheaper and faster.
所以它是什么?
So what is it?
事实上 它有点像瑞士基因军用刀
It’s actually like a genetic Swiss army knife.
我们可以假设这是一个瑞士军用刀
We can pretend this is a Swiss army knife
里面有不同的工具
with different tools in it,
其中一个有点像放大镜
and one of the tools is kind of like a magnifying glass
或是我们DNA的导航器
or a GPS for our DNA,
它可以指引我们到某个DNA片段
so it can home in on a certain spot.
下一个工具像是一把剪刀
And the next tool is like scissors
可以准确的把该位置的DNA片段剪下来
that can cut the DNA right in that spot.
最后我们会有一支笔
And finally we have a pen
我们完全可以在断点处重新编写基因码
where we can literally rewrite the genetic code in that location.
真的如此简单呢
It’s really that simple.
这项科技才刚诞生3年
And this technology, which came on the scene just three years ago,
但已经引起科学界的轰动
has taken science by storm.
它演化速度如此之快 这令科学家们相当兴奋
It’s evolving so fast, and it’s so freaking exciting to scientists,
我承认我对这项技术也很着迷 我们在实验室也在使用
and I admit I’m fascinated by it and we use it in my own lab,
我想有人已经打算跨出下一步了
that I think someone is going to go that extra step
并开始进行人类基因改造工程
and continue the GM human embryo work
也许可能会制造定制婴儿
and maybe make designer babies.
这种现象普遍存在
This is so ubiquitous now.
这才三年的时间
It just came on the scene three years ago.
今天已经有好几千个实验室掌握了这项技术
Thousands of labs literally have this in hand today,
他们正在做重要的调查
and they’re doing important research.
他们大多数人对定制婴儿没有兴趣
Most of them are not interested in designer babies.
他们研究的是人类的疾病
They’re studying human disease
以及其他重要的科学原理
and other important elements of science.
所以很多关于CRISPR的调查研究都有了进展
So there’s a lot of good research going on with CRISPR.
事实上 我们现在能实现基因改造
And the fact that we can now do genetic modifications
过去这项技术可能会耗时数年 几百万美元
that used to take years and cost millions of dollars
现在可能几周 几千美金就能做到
in a few weeks for a couple thousand bucks,
对我一个科学家而言 这太棒了
to me as a scientist that’s fantastic,
但是与此同时
but again, at the same time,
它也会让人越走越远
it opens the door to people going too far.
我觉得对一些人来说
And I think for some people
关注的重点并不在于科学本身
the focus is not going to be so much on science.
那不是驱使他们研究的动力
That’s not what’s going to be driving them.
真正驱使他们行动的是意识形态或利益
It’s going to be ideology or the chase for a profit.
所以他们才打算制造定制婴儿
And they’re going to go for designer babies.
那么我们为什么要担心这件事?
So why should we be concerned about this?
假设我们回到两个世纪前 从达尔文时代开始
We know from Darwin, if we go back two centuries,
我们就知道 进化及基因学对人类会产生巨大影响
that evolution and genetics profoundly have impacted humanity, who we are today.
一些人认为 我们的世界似乎是由社会主义达尔文主义运作
And some think there’s like a social Darwinism at work in our world,
甚至也许优生学也在影响着这个世界
and maybe even a eugenics as well.
想象一下这些趋势 这些势头
Imagine those trends, those forces,
加上强大的 无所不在的
with a booster rocket of this CRISPR technology
快速崛起的CRISPR会怎么样
that is so powerful and so ubiquitous.
事实上 我们只要回到上世纪
And in fact, we can just go back one century to the last century
就能看到优生学带来了什么
to see the power that eugenics can have.
我父亲 皮特·纳福勒
So my father, Peter Knoepfler,
就出生在维也纳
was actually born right here in Vienna.
1929年出生 维也纳人
He was Viennese, and he was born here in 1929.
我祖父母有了我爸爸的时候
And when my grandparents had little baby Peter,
世界变了样 对么?
the world was very different. Right?
维也纳变得不一样了
It was a different Vienna.
美国也变得不一样了
The United States was different.
世界不同了
The world was different.
优生学正在兴起
There was a eugenics rising,
我想我的祖父母
and my grandparents realized,
应该很快就意识到这一点
pretty quickly I think,
在优生学方面 他们站错了队
that they were on the wrong side of the eugenics equation.
除了他们的家人
And so despite this being their home
还有整个亲戚家族
and their whole extended family’s home,
都被优生学影响了好几代
and this area being their family’s home for generations,
因为优生学
they decided because of eugenics
他们决定离开家乡
that they had to leave.
他们存活了下来 但心也碎了
And they survived, but they were heartbroken,
我不确定 我父亲是不是真的想离开维也纳
and I’m not sure my dad ever really got over leaving Vienna.
1938年 他才8岁
He left when he was just eight years old
就离开了维也纳
in 1938.
今天 我看见了一个新的优生学
So today, I see a new eugenics
正浮出水面
kind of bubbling to the surface.
它必须是个仁慈 温和 正面的优生学
It’s supposed to be a kinder, gentler, positive eugenics,
不同于以往的优生学
different than all that past stuff.
但是我想尽管我们把重点放在了改进人类
But I think even though it’s focused on trying to improve people,
也很有可能造成消极的结果
it could have negative consequences,
这很令我担心
and it really worries me
有一些支持新优生学的顶尖人士认为
that some of the top proponents of this new eugenics,
CRISPR技术就是他们定制婴儿的门票
they think CRISPR is the ticket to make it happen.
所以我不得不承认
So I have to admit, you know,
我们谈的优生学是要让人变得更好
eugenics, we talk about making better people.
这个问题很难回答
It’s a tough question.
当我们谈到人类的时候 什么才是更好?
What is better when we’re talking about a human being?
我承认 我们很多人
But I admit I think maybe a lot of us
都同意 我们人类
could agree that human beings,
可以做一些小的改善
maybe we could use a little betterment.
看看我们的政治家
Look at our politicians
这边的 美国的
here, you know, back in the US —
上帝目前禁止我们这样做
God forbid we go there right now.
或许我们面对镜子里的自己
Maybe even if we just look in the mirror,
我们都希望会有办法让自己变得更好
there might be ways we think we could be better.
说老实话 我也希望 这边头发多点 不要秃顶
I might wish, honestly, that I had more hair here, instead of baldness.
一些人 可能希望再长高一点
Some people might wish they were taller,
有适当的体重 不同的脸蛋
have a different weight, a different face.
如果我们要做这些事 我们一定能做到
If we could do those things, we could make those things happen,
或者 我们可以让我们的孩子拥有这些
or we could make them happen in our children,
这真的很吸引人
it would be very seductive.
但随之而来的也会有风险
And yet coming with it would be these risks.
我谈的优生学
I talked about eugenics,
对人类来说 也会有风险
but there would be risks to individuals as well.
先不谈改进人类的问题
So if we forget about enhancing people
就只是试着用基因改造让人类更健康
and we just try to make them healthier using genetic modification,
这技术就是这么全新
this technology is so new
如此强而有力
and so powerful,
一旦发生意外 我们可能更容易生病
that by accident we could make them sicker.
很容易就发生这样的事
That easily could happen.
还存在另一个风险
And there’s another risk,
所有合法的 重要的基因改造研究
and that is that all of the legitimate, important genetic modification research
只能在实验室进行——
going on just in the lab —
我再强调一次 他们对定制婴儿没有兴趣——
again, no interest in designer babies —
只有少数人继续走定制婴儿这条路
a few people going the designer baby route,
这只会让事情变得更糟
things go badly,
整个产业可能就会被毁掉
that entire field could be damaged.
我认为政府可能
I also think it’s not that unlikely
对基因改造开始有兴趣
that governments might start taking an interest in genetic modification.
例如 我们想象的基因改造小女孩珍娜
So for example our imagined GM Jenna child
她是比较健康的
who is healthier,
如果可以降低这一代的医疗照顾成本
if there’s a generation that looks like they have lower health care costs,
政府就有可能强制他们的市民
it’s possible that governments may start trying to compel their citizens
走向基因改造这条路
to go the GM route.
看一下中国的一胎政策
Look at China’s one-child policy.
他们限制了将近4亿人口的出生
It’s thought that that prevented the birth of 400 million human beings.
所以基因改造
So it’s not beyond the realm of possible
是由政府来推动实施的
that genetic modification could be something that governments push.
一旦定制婴儿 在我们数字化时代
And if designer babies become popular,
成为流行词——
in our digital age —
病毒式影片 社交媒体——
viral videos, social media —
要是定制儿童被认为是一种时尚
what if designer babies are thought to be fashionable,
一旦他们变成新时代的社会名流
and they kind of become the new glitterati,
下一个卡戴珊之类的?
the new Kardashians or something?
这样的趋势我们能把控么?
You know, are those trends that we really could control?
我不觉得我们能做到
I’m not convinced that we could.
我再说一遍 这件事现在看起来像万圣节前夕
So again, today it’s Halloween
我们讨论基因改造
and when we talk about genetic modification,
还有一个与万圣节前夕相关的字眼
there’s one Halloween-associated character
而且常常被人们提到
that is talked about or invoked more than anything else,
就是弗兰肯斯坦
and that is Frankenstein.
像是基因改造食品还有其他类似东西一样
Mostly that’s been Frankenfoods and all this other stuff.
但如果我们现在好好想想 人类将来有这么一天
But if we think about this now and we think about it in the human context
比如像万圣节前夕
on a day like Halloween,
父母已经可以定制他们的基因小孩
if parents can in essence costume their children genetically,
那我们现在讨论的会不会就是弗兰肯斯坦2.0版了?
are we going to be talking about a Frankenstein 2.0 kind of situation?
我不这么想 我不认为事情会那么极端
I don’t think so. I don’t think it’s going to get to that extreme.
但当我们打算篡改人类基因密码的时候
But when we are going about hacking the human code,
一切随之而来的就都失去了
I think all bets are off in terms of what might come of that.
这是很危险的
There would still be dangers.
我们回首过去
And we can look in the past
看看那些科技变革带来的影响
to other elements of transformative science
想想他们是怎样失去控制的
and see how they can basically go out of control
并且弥漫到整个社会
and permeate society.
我就给你们举个例子 人工授精
So I’ll just give you one example, and that is in vitro fertilization.
大约在40年前
Almost exactly 40 years ago,
史上第一个试管婴儿路易斯布朗诞生了
test tube baby number one Louise Brown was born,
这是一件了不起的事
and that’s a great thing,
从那以后大约有500万的试管婴儿诞生
and I think since then five million IVF babies have been born,
他们带来了无尽快乐
bringing immeasurable happiness.
许多家长都爱着他们的孩子
A lot of parents now can love those kids.
但试想一下 才40年的时间
But if you think about it, in four decades,
科技就为我们带来了500万的婴儿
five million babies being born from a new technology
这真的很了不起
is pretty remarkable,
同样的情况也有可能发生在
and the same kind of thing could happen
人类基因改造 制造设计婴儿方面
with human genetic modification and designer babies.
这取决于我们接下来几个月或是接下来的几年
So depending on the decisions we make in the next few months,
做出的决定
the next year or so,
如果短短几十年里
if designer baby number one is born,
第一例设计婴儿就诞生了
within a few decades,
就意味着会有几百万的基因改造人类也相继诞生
there could well be millions of genetically modified humans.
但这也有点不同 因为如果我们 台下的你们 或者我
And there’s a difference there too, because if we, you in the audience, or I,
如果我们决定制造一个定制婴儿
if we decide to have a designer baby,
他们的孩子也会被基因改造 一代接着一代
then their children will also be genetically modified, and so on,
因为它是可继承的
because it’s heritable.
所以这会带来很大的不同
So that’s a big difference.
当所有这一切都涌上脑海时
So with all of this in mind,
想想我们应该怎么做?
what should we do?
事实上 从明天开始 下一个月
There’s actually going to be a meeting
将在华盛顿召开一次大会
a month from tomorrow in Washington, D.C.
这场会议是由美国国家科学院举办
by the US National Academy of Sciences
旨在处理具体问题
to tackle that exact question.
人类基因改造之路正确方向在何方?
What is the right path forward with human genetic modification?
我相信这次
I believe at this time
我们需要再缓一缓
we need a moratorium.
我们必须对此禁止
We have to ban this.
我们不应该允许制造基因改造的人类
We should not allow creating genetically modified people,
因为这太危险了 而且结果难以预测
because it’s just too dangerous and too unpredictable.
但是很多人——
But there’s a lot of people —
谢谢
Thanks.
让我说 身为一名科学家
And let me say, just as a scientist,
我有点害怕在公众面前讲出这种事
it’s a little bit scary for me to say that in public,
因为科学通常并不会有自我限制和自我规范这样
because science generally doesn’t like self-regulation and things like that.
所以我觉得基因改造这件事还要等等
So I think we need to put a hold on this,
但是有很多人并不同意我的观点
but there are many people who not only disagree with me,
他们完全是相反的看法
they feel the exact opposite.
他们像是火力全开 全力冲刺
They’re like, step on the gas, full speed ahead,
让我们开始制造设计婴儿吧
let’s make designer babies.
所以12月的一次大会上
And so in the meeting in December
以及接下来几个月类似的会议
and other meetings that are likely to follow in the next few months,
很有可能 我们再也没有机会拖延了
it’s very possible there may be no moratorium.
我认为造成这个问题的部分原因在于
And I think part of the problem that we have
这样的趋势影响
is that all of this trend,
在人体上做基因改造的变革
this revolution in genetic modification applying to humans,
公众对此并不知情
the public hasn’t known about it.
没人站出来说
Nobody has been saying,
这是重大的决定 重大的变革
look, this is a big deal, this is a revolution,
这会在很私人的方面影响你
and this could affect you in very personal ways.
所以我目标的一部分事实就是去改变
And so part of my goal is actually to change that
教育呼吁大众一起
and to educate and engage with the public
让你们参与到讨论中来
and get you guys talking about this.
我希望这些会议中 会有大众的参与
And so I hope at these meetings that there will be a role for the public
听见大众的声音
to bring their voice to bear as well.
所以如果我们现在再回到2030年 想象一下那个场景
So if we kind of circle back now to 2030 again, that imagined story,
这取决于我们的决定 我再说一遍 今天——
and depending on the decisions we make, again, today —
无论是接下来的几个月还是几年——
literally we don’t have a lot of time —
我们都没有太多的时间了
in the next few months, the next year or so,
因为这项科技已经像野火般蔓延开来
because this technology is spreading like wildfire.
让我们假装回到那个真实的场景中
Let’s pretend we’re back in that reality.
我们在公园
We’re at a park,
我们的孩子在荡着秋千
and our kid is swinging on the swing.
我们的小孩是正常的孩子么
Is that kid a regular old kid,
还是我们决定要一个定制的孩子?
or did we decide to have a designer baby?
又或者说 我们选择了传统的道路
And let’s say we went the sort of traditional route,
我们的孩子同样在荡着秋千
and there’s our kid swinging on the swing,
说老实话 他们会把自己弄脏
and frankly, they’re kind of a mess.
他们的头发跟我一样多
Their hair is all over the place like mine.
他们还留着鼻涕
They have a stuffy nose.
他们不是世界上最好的学生
They’re not the best student in the world.
但他们很可爱 你爱他们
They’re adorable, you love them,
但是旁边秋千上坐着的孩子
but there on the swing next to them,
是他们最好的朋友 一个基因改造的孩子
their best friend is a GM kid,
他们两个都在像这样荡着秋千
and the two of them are kind of swinging like this,
你会忍不住比较 对吗?
and you can’t help but compare them, right?
基因改造的孩子荡得更高
And the GM kid is swinging higher,
他们看起来更好 他们是更优秀的学生
they look better, they’re a better student,
你不需要给他们擦鼻涕 因为他们不会流鼻涕
they don’t have that stuffy nose you need to wipe.
那样的话 你觉得怎么样
How is that going to make you feel
下次 你还会做这样的决定么?
and what decision might you make next time?
谢谢
Thank you.

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视频概述

对于定制婴儿这一问题,他会带来很多不良的影响,人类应该认真思考这一决策。

听录译者

收集自网络

翻译译者

喋喋

审核员

W

视频来源

https://www.youtube.com/watch?v=nOHbn8Q1fBM

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