As a little Hawaiian, my mom and auntie always told me stories about Kalaupapa -- the Hawaiian leper colony surrounded by the highest sea cliffs in the world -- and Father Damien, the Belgian missionary who gave his life for the Hawaiian community. As a young nurse, my aunt trained the nuns caring for the remaining lepers almost a 100 years after Father Damien died of leprosy. I remember stories she told about traveling down switchback cliff paths on a mule, while my uncle played her favorite hula songs on the ukulele all the way down to Kalaupapa.
在我還是个年幼的夏威夷人時, 我媽跟姑姑常跟我提到有關 卡勞帕帕的故事—— 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—— 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。 身為一位年輕護士的姑姑, 在達米安神父因麻風病身故後, 她訓練了修女和照顧剩下的 痲瘋病患者將近一百年。 我依稀記得她跟我過說的故事: 她和姑丈騎著騾子穿行在 高低起伏的懸崖小路上, 姑丈用烏克麗麗彈奏著 她最喜歡的夏威夷歌曲, 一路回到達卡勞帕帕。
You see, as a youngster, I was always curious about a few things. First was why a Belgian missionary chose to live in complete isolation in Kalaupapa, knowing he would inevitably contract leprosy from the community of people he sought to help. And secondly, where did the leprosy bacteria come from? And why were Kānaka Maoli, the indigenous people of Hawaii, so susceptible to developing leprosy, or "mai Pake?"
當時還是小朋友的我, 我總是對一些事情感到好奇。 第一,為什麼一位比利時傳教士 要選擇在一個與世隔絕 的卡勞帕帕生活, 而且還有可能會從 他幫助的社區居民那邊 感染到痲瘋病。 第二, 這些痲瘋病細菌是從哪裡來的? 為什麼夏威夷的土著居民, 這麼這麼容易感染到痲瘋病?
This got my curious about what makes us unique as Hawaiians -- namely, our genetic makeup. But it wasn't until high school, through the Human Genome Project, that I realized I wasn't alone in trying to connect our unique genetic ancestry to our potential health, wellness and illness. You see, the 2.7 billion-dollar project promised an era of predictive and preventative medicine based on our unique genetic makeup. So to me it always seemed obvious that in order to achieve this dream, we would need to sequence a diverse cohort of people to obtain the full spectrum of human genetic variation on the planet. That's why 10 years later, it continues to shock me, knowing that 96 percent of genome studies associating common genetic variation with specific diseases have focused exclusively on individuals of European ancestry.
這讓我感到很好奇, 為什麼只有夏威夷人? 結果答案是:我們基因。 但直到高中, 在一次的人類基因專案中, 我才明白,我並不是唯一一個 想要試從基因祖譜中 了解我們潛在的 健康及疾病問題的人。 要知道, 這 27 億美金的研究計畫, 建立在我們特有的基因基礎上, 保证了一個可預測、可預防的 醫療時代。 顯而易見 為了要完成這個夢想, 我們需要一大群多樣化的人種 來取得地球上各樣人種的 完整基因圖譜。 這也是為什麼十年後, 這件事不斷地衝擊著我, 因為我發現到, 96% 與特定疾病有關的基因研究 只著重在祖先是歐洲人的人群。
Now you don't need a PhD to see that that leaves four percent for the rest of diversity. And in my own searching, I've discovered that far less than one percent have actually focused on indigenous communities, like myself. So that begs the question: Who is the Human Genome Project actually for? Just like we have different colored eyes and hair, we metabolize drugs differently based on the variation in our genomes. So how many of you would be shocked to learn that 95 percent of clinical trials have also exclusively featured individuals of European ancestry?
各位不需要博士學位都能理解, 有 4% 的人被遺棄了。 而且在我的研究中, 我發現, 著重在像我這樣的原住民 的相關研究根本不到 1% 。 這衍伸出一個問題: 人類基因組計畫究竟是為誰而做的? 像我們,有不同的眼睛顏色與髮色, 我們對藥物的新陳代謝不同, 因為我們有不同的基因組。 所以我不知道各位會不會感到驚訝, 目前 95% 的臨床實驗, 是專門為歐洲祖先的後代做的。
This bias and systematic lack of engagement of indigenous people in both clinical trials and genome studies is partially the result of a history of distrust. For example, in 1989, researchers from Arizona State University obtained blood samples from Arizona's Havasupai tribe, promising to alleviate the burden of type 2 diabetes that was plaguing their community, only to turn around and use those exact same samples -- without the Havasupai's consent -- to study rates of schizophrenia, inbreeding, and challenge the Havasupai's origin story. When the Havasupai found out, they sued successfully for $700,000, and they banned ASU from conducting research on their reservation. This culminated in a sort of domino effect with local tribes in the Southwest -- including the Navajo Nation, one of the largest tribes in the country -- putting a moratorium on genetic research.
這種系統性 對原住民缺乏合約精神的偏見, 不僅在臨床實驗上, 還有基因研究上都是。 就是這些因素造成歷史上 種族不信任的部分原因。 舉個例子, 1989年,亞利桑那州州立大學 的研究人員 在亞利桑那州哈瓦蘇部落 採集了血液的樣本, 承諾要降低社區的 2 型糖尿病的病情, 但是卻在沒有經過哈瓦蘇人的同意下, 拿了這些樣本 去做精神分裂症、 近親繁殖的研究, 並挑戰哈瓦蘇部落的歷史起源。 當哈瓦蘇人發現的時候, 他們告上法院, 獲得 70 萬美金的賠償, 並禁止亞利桑那州立大學 繼續從事接下來的研究。 這件事在美國西南部 造成了骨牌效應, 包括美國的最大部落,納瓦霍族, 也叫停了一個基因的研究。
Now despite this history of distrust, I still believe that indigenous people can benefit from genetic research. And if we don't do something soon, the gap in health disparities is going to continue to widen. Hawaii, for example, has the longest life expectancy on average of any state in the US, yet native Hawaiians like myself die a full decade before our non-native counterparts, because we have some of the highest rates of type 2 diabetes, obesity, and the number one and number two killers in the US: cardiovascular disease and cancer.
排除歷史上的不信任事件, 我還是相信原住民可以在 基因研究上獲得好處。 如果我們不盡快採取行動, 醫療保健差距的鴻溝將會越來越大。 以夏威夷為例子, 在美國所有的州當中, 他們的平均壽命是最長的, 但像我這樣的夏威夷人, 卻比非原住民的人要早 10 年去世, 因為我們有 2 型糖尿病、 肥胖症, 和美國頭號和二號殺手疾病: 心血管疾病及癌症。
So how do we ensure the populations of people that need genome sequencing the most are not the last to benefit? My vision is to make genetic research more native, to indigenize genome sequencing technology.
所以,我們要如何確保, 最需要基因定序的族群, 不會是最後才能受益? 我的願景是要讓基因研究更貼近當地、 讓基因定序的科技更當地化。
Traditionally, genomes are sequenced in laboratories. Here's an image of your classic genome sequencer. It's huge. It's the size of a refrigerator. There's this obvious physical limitation. But what if you could sequence genomes on the fly? What if you could fit a genome sequencer in your pocket? This nanopore-based sequencer is one 10,000th the size of your traditional genome sequencer. It doesn't have the same physical limitations, in that it's not tethered to a lab bench with extraneous cords, large vats of chemicals or computer monitors. It allows us to de-black box genome sequencing technology development in a way that's immersive and collaborative, activating and empowering indigenous communities ... as citizen scientists.
傳統上,基因定序都是在實驗室中進行。 這裡有一張傳統基因定序儀器的照片。 它很大。 差不多有一台冰箱的大小。 所以它有空間上的限制。 但如果你随时随地都可以 使用基因定序的儀器呢? 要是你可以把基因定序儀器 放進口袋呢? 這台奈米孔徑的定序儀, 它只有傳統儀器的萬分之一倍。 它沒有空間上限制的問題, 它不需要用鐵鍊把它栓在 實驗室的板凳上, 也不用大量的化學物質和電腦螢幕。 它打破了基因定序科技發展的黑盒子, 運用著身臨其境般的協作方式, 啟動並激勵原住民社群, 成為市民科學家。
100 years later in Kalaupapa, we now have the technology to sequence leprosy bacteria in real time, using mobile genome sequencers, remote access to the Internet and cloud computation. But only if that's what Hawaiian people want. In our space, on our terms.
一百年後的卡勞帕帕, 我們现在有即時性 獲取痲瘋病細菌定序的科技。 這主要利用行動基因定序儀, 透過網路,遠端存取 及雲端計算—— 只要夏威夷人想要—— 在我們的土地, 在我們的語言裡。
IndiGenomics is about science for the people by the people. We'll be starting with a tribal consultation resource, focused on educating indigenous communities on the potential use and misuse of genetic information. Eventually we'd like to have our own IndiGenomics research institute to conduct our own experiments and educate the next generation of indigenous scientists.
本土基因學是為人而做, 由人而做的。 我們會從部落諮詢 資源開始做起, 著重在原住民社區的教育上, 特別是正當和不當使用 基因資訊的影響。 最後,我們會有我們自己的 在地研究機構 進行我們自己的實驗, 同時教育出下一代的原住民科學家。
In the end, indigenous people need to be partners in and not subjects of genetic research. And for those on the outside, just as Father Damien did, the research community needs to immerse itself in indigenous culture or die trying.
最後, 原住民應該要參與其中, 而不是只有把自己當作研究對象, 而對那些不是原住民的朋友來說, 應該學習達米安神父的精神 研究團體需要把自己 溶入到原住民文化中, 或者終生奉獻。
Mahalo.
謝謝 (夏威夷語)
(Applause)
(掌聲)