my mom and auntie always told me stories about Kalaupapa --

在我還是个年幼的夏威夷人時，

the Hawaiian leper colony

我媽跟姑姑常跟我提到有關 卡勞帕帕的故事——

surrounded by the highest sea cliffs in the world --

一個被世界上最高的面海懸崖包圍著的 夏威夷痲瘋病部落——

and Father Damien,

還有一位奉獻了他的一生給 夏威夷社區的比利時傳教士——達米安神父。

the Belgian missionary who gave his life for the Hawaiian community.

身為一位年輕護士的姑姑，

As a young nurse,

在達米安神父因麻風病身故後，

my aunt trained the nuns caring for the remaining lepers

她訓練了修女和照顧剩下的 痲瘋病患者將近一百年。

almost a 100 years after Father Damien died of leprosy.

我依稀記得她跟我過說的故事：

I remember stories she told

她和姑丈騎著騾子穿行在 高低起伏的懸崖小路上，

about traveling down switchback cliff paths on a mule,

姑丈用烏克麗麗彈奏著 她最喜歡的夏威夷歌曲，

while my uncle played her favorite hula songs on the ukulele

一路回到達卡勞帕帕。

all the way down to Kalaupapa.

當時還是小朋友的我，

You see, as a youngster,

我總是對一些事情感到好奇。

I was always curious about a few things.

第一，為什麼一位比利時傳教士

First was why a Belgian missionary chose to live in complete isolation

要選擇在一個與世隔絕 的卡勞帕帕生活，

in Kalaupapa,

而且還有可能會從 他幫助的社區居民那邊

knowing he would inevitably contract leprosy

感染到痲瘋病。

from the community of people he sought to help.

第二，

And secondly,

這些痲瘋病細菌是從哪裡來的？

where did the leprosy bacteria come from?

為什麼夏威夷的土著居民，

And why were Kānaka Maoli,

這麼這麼容易感染到痲瘋病？

the indigenous people of Hawaii,

這讓我感到很好奇， 為什麼只有夏威夷人？

so susceptible to developing leprosy, or "mai Pake?"

結果答案是：我們基因。

This got my curious about what makes us unique as Hawaiians --

但直到高中，

namely, our genetic makeup.

在一次的人類基因專案中，

But it wasn't until high school,

我才明白，我並不是唯一一個

through the Human Genome Project,

想要試從基因祖譜中

that I realized I wasn't alone

了解我們潛在的 健康及疾病問題的人。

in trying to connect our unique genetic ancestry

要知道，

to our potential health, wellness and illness.

這 27 億美金的研究計畫，

You see,

建立在我們特有的基因基礎上，

the 2.7 billion-dollar project

保证了一個可預測、可預防的 醫療時代。

promised an era of predictive and preventative medicine

顯而易見

based on our unique genetic makeup.

為了要完成這個夢想，

So to me it always seemed obvious

我們需要一大群多樣化的人種

that in order to achieve this dream,

來取得地球上各樣人種的 完整基因圖譜。

we would need to sequence a diverse cohort of people

這也是為什麼十年後，

to obtain the full spectrum of human genetic variation on the planet.

這件事不斷地衝擊著我，

That's why 10 years later,

因為我發現到，

it continues to shock me,

96% 與特定疾病有關的基因研究

knowing that 96 percent of genome studies

只著重在祖先是歐洲人的人群。

associating common genetic variation with specific diseases

各位不需要博士學位都能理解，

have focused exclusively on individuals of European ancestry.

有 4% 的人被遺棄了。

Now you don't need a PhD

而且在我的研究中，

to see that that leaves four percent for the rest of diversity.

我發現，

And in my own searching,

著重在像我這樣的原住民 的相關研究根本不到 1% 。

I've discovered that far less than one percent

這衍伸出一個問題：

have actually focused on indigenous communities, like myself.

人類基因組計畫究竟是為誰而做的？

So that begs the question:

像我們，有不同的眼睛顏色與髮色，

Who is the Human Genome Project actually for?

我們對藥物的新陳代謝不同，

Just like we have different colored eyes and hair,

因為我們有不同的基因組。

we metabolize drugs differently

所以我不知道各位會不會感到驚訝，

based on the variation in our genomes.

目前 95% 的臨床實驗，

So how many of you would be shocked to learn

是專門為歐洲祖先的後代做的。

that 95 percent of clinical trials

這種系統性

have also exclusively featured individuals of European ancestry?

對原住民缺乏合約精神的偏見，

This bias

不僅在臨床實驗上， 還有基因研究上都是。

and systematic lack of engagement of indigenous people

就是這些因素造成歷史上 種族不信任的部分原因。

in both clinical trials and genome studies

舉個例子，

is partially the result of a history of distrust.

1989年，亞利桑那州州立大學 的研究人員

For example,

在亞利桑那州哈瓦蘇部落 採集了血液的樣本，

in 1989, researchers from Arizona State University

承諾要降低社區的

obtained blood samples from Arizona's Havasupai tribe,

2 型糖尿病的病情，

promising to alleviate the burden of type 2 diabetes

但是卻在沒有經過哈瓦蘇人的同意下，

that was plaguing their community,

拿了這些樣本

only to turn around and use those exact same samples --

去做精神分裂症、 近親繁殖的研究，

without the Havasupai's consent --

並挑戰哈瓦蘇部落的歷史起源。

to study rates of schizophrenia, inbreeding,

當哈瓦蘇人發現的時候，

and challenge the Havasupai's origin story.

他們告上法院， 獲得 70 萬美金的賠償，

When the Havasupai found out,

並禁止亞利桑那州立大學 繼續從事接下來的研究。

they sued successfully for $700,000,

這件事在美國西南部 造成了骨牌效應，

and they banned ASU from conducting research on their reservation.

包括美國的最大部落，納瓦霍族，

This culminated in a sort of domino effect

也叫停了一個基因的研究。

with local tribes in the Southwest --

排除歷史上的不信任事件，

including the Navajo Nation,

我還是相信原住民可以在 基因研究上獲得好處。

one of the largest tribes in the country --

如果我們不盡快採取行動，

putting a moratorium on genetic research.

醫療保健差距的鴻溝將會越來越大。

Now despite this history of distrust,

以夏威夷為例子，

I still believe that indigenous people can benefit from genetic research.

在美國所有的州當中， 他們的平均壽命是最長的，

And if we don't do something soon,

但像我這樣的夏威夷人，

the gap in health disparities is going to continue to widen.

卻比非原住民的人要早 10 年去世，

Hawaii, for example,

因為我們有 2 型糖尿病、

has the longest life expectancy on average of any state in the US,

肥胖症，

yet native Hawaiians like myself

和美國頭號和二號殺手疾病：

die a full decade before our non-native counterparts,

心血管疾病及癌症。

because we have some of the highest rates of type 2 diabetes,

所以，我們要如何確保，

obesity,

最需要基因定序的族群，

and the number one and number two killers in the US:

不會是最後才能受益？

cardiovascular disease and cancer.

我的願景是要讓基因研究更貼近當地、

So how do we ensure

讓基因定序的科技更當地化。

the populations of people that need genome sequencing the most

傳統上，基因定序都是在實驗室中進行。

are not the last to benefit?

這裡有一張傳統基因定序儀器的照片。

My vision is to make genetic research more native,

它很大。

to indigenize genome sequencing technology.

差不多有一台冰箱的大小。

Traditionally, genomes are sequenced in laboratories.

所以它有空間上的限制。

Here's an image of your classic genome sequencer.

但如果你随时随地都可以 使用基因定序的儀器呢？

It's huge.

要是你可以把基因定序儀器 放進口袋呢？

It's the size of a refrigerator.

這台奈米孔徑的定序儀，

There's this obvious physical limitation.

它只有傳統儀器的萬分之一倍。

But what if you could sequence genomes on the fly?

它沒有空間上限制的問題，

What if you could fit a genome sequencer in your pocket?

它不需要用鐵鍊把它栓在 實驗室的板凳上，

This nanopore-based sequencer

也不用大量的化學物質和電腦螢幕。

is one 10,000th the size of your traditional genome sequencer.

它打破了基因定序科技發展的黑盒子，

It doesn't have the same physical limitations,

運用著身臨其境般的協作方式，

in that it's not tethered to a lab bench with extraneous cords,

啟動並激勵原住民社群，

large vats of chemicals or computer monitors.

成為市民科學家。

It allows us to de-black box genome sequencing technology development

一百年後的卡勞帕帕，

in a way that's immersive and collaborative,

我們现在有即時性 獲取痲瘋病細菌定序的科技。

activating and empowering indigenous communities ...

這主要利用行動基因定序儀,

as citizen scientists.

透過網路，遠端存取

100 years later in Kalaupapa,

及雲端計算——

we now have the technology to sequence leprosy bacteria in real time,

只要夏威夷人想要——

using mobile genome sequencers,

在我們的土地，

remote access to the Internet

在我們的語言裡。

and cloud computation.

本土基因學是為人而做， 由人而做的。

But only if that's what Hawaiian people want.

我們會從部落諮詢 資源開始做起，

In our space,

著重在原住民社區的教育上，

on our terms.

特別是正當和不當使用 基因資訊的影響。

IndiGenomics is about science for the people by the people.

最後，我們會有我們自己的 在地研究機構

We'll be starting with a tribal consultation resource,

進行我們自己的實驗，

focused on educating indigenous communities

同時教育出下一代的原住民科學家。

on the potential use and misuse of genetic information.

最後，

Eventually we'd like to have our own IndiGenomics research institute

原住民應該要參與其中， 而不是只有把自己當作研究對象，

to conduct our own experiments

而對那些不是原住民的朋友來說，

and educate the next generation of indigenous scientists.

應該學習達米安神父的精神

In the end,

研究團體需要把自己 溶入到原住民文化中，

indigenous people need to be partners in and not subjects of genetic research.

或者終生奉獻。

And for those on the outside,

謝謝 （夏威夷語）

just as Father Damien did,

（掌聲）

the research community needs to immerse itself in indigenous culture

or die trying.

Mahalo.

(Applause)