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为什么基因研究要多样化 – 译学馆
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为什么基因研究要多样化

Why genetic research must be more diverse | Keolu Fox

在我还是个夏威夷小孩子的时候
As a little Hawaiian,
我母亲和阿姨就总跟我说卡劳帕帕半岛的故事
my mom and auntie always told me stories about Kalaupapa
它是夏威夷岛上的麻风病人隔离区
the Hawaiian leper colony
四周环绕着世界上最高的海蚀崖–
surrounded by the highest sea cliffs in the world —
她们还总提到达米盎神父
and Father Damien,
那位将一生献给夏威夷麻风病患聚集区的比利时传教士
the Belgian missionary who gave his life for the Hawaiian community.
那时我阿姨是一名年轻护士
As a young nurse, my aunt
在达米盎神父因麻风逝世近一百年后
trained the nuns caring for the remaining lepers
我阿姨训练了一批修女来照料剩下的麻风病患者
almost a 100 years after Father Damien died of leprosy.
我还记得她讲的故事
I remember stories she told
他们骑着骡子沿着蜿蜒曲折的崖壁前往卡劳帕帕
about traveling down switchback cliff paths on a mule,
我叔叔沿途一直都在用尤克里里
while my uncle played her favorite hula songs on the ukulele
弹着她最爱的呼啦舞曲子
all the way down to Kalaupapa.
你知道 年轻人嘛
You see, as a youngster,
对一些事情我总是很好奇
I was always curious about a few things.
首先就是我不明白为什么一名比利时传教士会选择
First was why a Belgian missionary chose
到卡劳帕帕半岛上过着这样一种完全与世隔绝的生活
to live in complete isolation in Kalaupapa,
而且还知道自己会不可避免地
knowing he would inevitably contract leprosy
从那些他帮助的病人们那里感染麻风病
from the community of people he sought to help.
其次
And secondly,
麻风病病菌是哪儿来的?
where did the leprosy bacteria come from?
还有为什么肯纳卡毛利人
And why were Kānaka Maoli,
也就是夏威夷的土著居民
the indigenous people of Hawaii,
对麻风病如此容易感染?
so susceptible to developing leprosy, or “mai Pake?”
这一切让我感到无比好奇
This got my curious
是什么让我们夏威夷人如此特别——
about what makes us unique as Hawaiians —
换言之 我们的基因组成到底有什么特别之处
namely, our genetic makeup.
但直到高中
But it wasn’t until high school,
学习到人类基因组计划后
through the Human Genome Project,
我才意识到自己并不是唯一
that I realized I wasn’t alone
试图将我们独特的基因血统
in trying to connect our unique genetic ancestry
与我们潜在的健康状况和病患联系起来的人
to our potential health, wellness and illness.
要知道
You see,
这个耗资二十七亿美元的计划
the 2.7 billion-dollar project
向我们允诺了一个可以根据特异的基因组成
promised an era of predictive and preventative medicine
进行预测预防医疗的时代
based on our unique genetic makeup.
在我看来 想要实现这个梦想
So to me it always seemed obvious
很显然我们需要
that in order to achieve this dream,
对不同群体的人进行基因序列分析
we would need to sequence a diverse cohort of people
以获得完整的全球人类基因遗传变异图谱
to obtain the full spectrum of human genetic variation on the planet.
这也就是为什么十年后
That’s why 10 years later,
我还是感到十分震惊
it continues to shock me,
在看到96%的
knowing that 96 percent of genome studies
关于’常见基因突变与特定疾病之间的联系’的基因组研究
associating common genetic variation with specific diseases
都仅仅关注了欧洲血统的个体之后
have focused exclusively on individuals of European ancestry.
你不需要什么博士学位
Now you don’t need a PhD
就能看到只剩下4%留给余下的所有基因多样性
to see that that leaves four percent for the rest of diversity.
我自己在做研究时
And in my own searching,
发现只有远远不到1%的研究
I’ve discovered that far less than one percent
真正地着有眼于像我所在这样的原住民社群
have actually focused on indigenous communities, like myself.
所以我要发问了
So that begs the question:
人类基因组计划究竟是在为谁谋福祉?
Who is the Human Genome Project actually for?
就像我们有着不同颜色的眼睛和头发一样
Just like we have different colored eyes and hair,
由于基因组的差异
we metabolize drugs differently
我们对药物的代谢机制也不尽相同
based on the variation in our genomes.
那么你们当中会有多少人为此感到震惊
So how many of you would be shocked to learn
得知95%的临床试验
that 95 percent of clinical trials
也同样都只是针对欧洲血统个体的研究?
have also exclusively featured individuals of European ancestry?
这种偏见
This bias
以及对土著居民一贯以来的
and systematic lack of engagement of indigenous people
临床试验和基因组研究的不足
in both clinical trials and genome studies
很大一部分是历史上遗留的不信任导致的
is partially the result of a history of distrust.
举个例子来说
For example,
1989年 亚利桑那州立大学的研究人员
in 1989, researchers from Arizona State University
从哈瓦苏帕部落获取了血液样本
obtained blood samples from Arizona’s Havasupai tribe,
承诺要减轻二型糖尿病给部落带来的负担
promising to alleviate the burden of type ⅱ diabetes
当时二型糖尿病正折磨着整个社群
that was plaguing their community,
结果他们却转过头来在全然没有得到哈瓦苏帕人同意的情况下
only to turn around and use those exact same samples —
就用那些样本
without the Havasupai’s consent —
进行了精神分裂症还有近亲繁殖的比率研究
to study rates of schizophrenia, inbreeding,
并对哈瓦苏帕族的起源提出了质疑
and challenge the Havasupai’s origin story.
哈瓦苏帕族发现之后
When the Havasupai found out,
起诉成功获得了七十万美金赔偿
they sued successfully for $700,000,
并且禁止ASU进入他们的保留地进行任何研究
and they banned ASU from conducting research on their reservation.
这件事引发了多米诺效应
This culminated in a sort of domino effect
甚至西南地区的一些部落
with local tribes in the southwest —
包括纳瓦霍族
including the Navajo Nation,
美国最大的部落之一
one of the largest tribes in the country —
也终止参与基因研究
putting a moratorium on genetic research.
现在 撇开那段充满着不信任的历史不谈
Now despite this history of distrust,
我仍然相信土著居民们是可以从基因研究中获利
I still believe that indigenous people can benefit from genetic research.
如果不抓紧时间行动起来的话
And if we don’t do something soon,
种族之间健康状况差异的鸿沟可能会越来越大
the gap in health disparities is going to continue to widen.
以夏威夷为例
Hawaii, for example,
在美国是平均寿命最长的州
has the longest life expectancy on average of any state in the US,
但像我这样的夏威夷原住民
yet native Hawaiians like myself
却比非原住民寿命短整整10年
die a full decade before our non-native counterparts,
因为我们在一些疾病上有着最高的发病率
because we have some of the highest rates
像二型糖尿病
of type ⅱ diabetes,
肥胖症
obesity,
还有致死率位居前二的两大杀手
and the number one and number two killers in the US:
心血管疾病和癌症
cardiovascular disease and cancer.
那么我们如何才能确保
So how do we ensure
让最迫切需要基因组测序的人们
the populations of people that need genome sequencing the most
权益不要到最后才得到保证?
are not the last to benefit?
我的设想是想让基因研究更本土化
My vision is to make genetic research more native,
也要让基因测序设备更本土化
to indigenize genome sequencing technology.
传统的基因测序都是在实验室进行的
Traditionally, genomes are sequenced in laboratories.
这是一台传统的基因测序仪
Here’s an image of your classic genome sequencer.
巨大
It’s huge.
几乎比得上冰箱的规格了
It’s the size of a refrigerator.
很明显 它有一定的物理因素限制
There’s this obvious physical limitation.
那你有没有想过如果我们可以在飞机上测序呢?
But what if you could sequence genomes on the fly?
如果测序仪小到可以放进口袋里呢?
What if you could fit a genome sequencer in your pocket?
这个纳米孔测序仪
This nanopore-based sequencer
只有传统测序仪万分之一的大小
is one 10,000th the size of your traditional genome sequencer.
它没有物理因素上的限制
It doesn’t have the same physical limitations,
不用再与无关的电线 大桶的化学药品
in that it’s not tethered to a lab bench
或电脑显示器一起 被拴在实验台上做测序
with extraneous cords, large vats of chemicals or computer monitors.
它使我们得以让基因测序以一种
It allows us to de-black box genome sequencing technology development
拟真而合作化的方式发展下去
in a way that’s immersive and collaborative,
让土著社群作为公民科学家为此感到振奋
activating and empowering indigenous communities …
并肯定这项工程
as citizen scientists.
一百年后的卡劳帕帕
100 years later in Kalaupapa,
现在我们能及时运用科技手段
we now have the technology to sequence leprosy bacteria in real time,
使用移动基因测序仪
using mobile genome sequencers,
远程网络
remote access to the Internet
和云计算来进行基因测序
and cloud computation.
但只有这是夏威夷人民的心声才行
But only if that’s what Hawaiian people want.
在我们的时空
In our space,
以如今的条件
on our terms.
本土遗传学是原住民自己参与的为自己谋福祉的科学
IndiGenomics is about science for the people by the people.
我们将从关于部落的研讨会开始
We’ll be starting with a tribal consultation resource,
同时致力于当地的教育
focused on educating indigenous communities
普及营养学 遗传学知识以及伦理
on the potential use and misuse of genetic information.
我们最终是希望本土科学家能够拥有自己的遗传学研究学会
Eventually we’d like to have our own IndiGenomics research institute
并能独立进行我们的试验
to conduct our own experiments
并培养下一代的本土科学家
and educate the next generation of indigenous scientists.
最后
In the end,
原住民应该成为基因研究的参与者而不是试验对象
indigenous people need to be partners in and not subjects of genetic research.
在外人看来
And for those on the outside,
就像达米盎神父一样
just as Father Damien did,
研究团体需要自己投身到土著文化中去
the research community needs to immerse itself in indigenous culture
死而后已
or die trying.
谢谢大家!
Mahalo.
(掌声)
(Applause)

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视频概述

基因研究也种族歧视,96%的关于疾病与基因突变的研究都是基于欧洲人体质。而原住民们则往往被忽视……遗传学家Keolu Fox先生的这次演讲就是为了呼吁让更多的种群参与到基因研究中来。让基因研究多样化。

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视频来源

https://www.youtube.com/watch?v=C44r6knuJtU

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