TED2016
Keolu Fox: Why genetic research must be more diverse
凱勞．福斯: 為什麼基因研究需要多元化？
Filmed:
Readability: 6.7
939,979 views
目前，96% 的基因研究是架構在歐洲人後代的基礎上。世界上剩下的人幾乎沒有包括在內——這是很危險的，基因學家兼 TED 的研究會員凱勞．福斯（ Keolu Fox）說，因為基因組成的不同，所以我們對藥物的反應也不同。福斯正努力要把基因定序在地化，特別是啟發原住民參與研究，為了就是要減少醫療保健上的差距。他說：「研究團體需要把自己融入原住民文化中，或者終生奉獻。」
Keolu Fox - Geneticist, indigenous rights activist
Keolu Fox explores the links between human genetic variation and disease in underrepresented populations. Full bio
Keolu Fox explores the links between human genetic variation and disease in underrepresented populations. Full bio
Double-click the English transcript below to play the video.
在我還是个年幼的夏威夷人時，
00:12
As a little Hawaiian,
0
866
1205
00:14
my mom and auntie always told me
stories about Kalaupapa --
stories about Kalaupapa --
1
2095
3382
我媽跟姑姑常跟我提到有關
卡勞帕帕的故事——
卡勞帕帕的故事——
00:17
the Hawaiian leper colony
2
5501
1321
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——
夏威夷痲瘋病部落——
00:18
surrounded by the highest
sea cliffs in the world --
sea cliffs in the world --
3
6846
2827
00:21
and Father Damien,
4
9697
1412
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。
夏威夷社區的比利時傳教士——達米安神父。
00:23
the Belgian missionary who gave his life
for the Hawaiian community.
for the Hawaiian community.
5
11133
3428
00:27
As a young nurse,
6
15102
1363
身為一位年輕護士的姑姑，
00:28
my aunt trained the nuns
caring for the remaining lepers
caring for the remaining lepers
7
16489
2941
在達米安神父因麻風病身故後，
00:31
almost a 100 years after
Father Damien died of leprosy.
Father Damien died of leprosy.
8
19454
3277
她訓練了修女和照顧剩下的
痲瘋病患者將近一百年。
痲瘋病患者將近一百年。
00:36
I remember stories she told
9
24501
1671
我依稀記得她跟我過說的故事：
00:38
about traveling down
switchback cliff paths on a mule,
switchback cliff paths on a mule,
10
26196
2952
她和姑丈騎著騾子穿行在
高低起伏的懸崖小路上，
高低起伏的懸崖小路上，
00:41
while my uncle played
her favorite hula songs on the ukulele
her favorite hula songs on the ukulele
11
29172
3131
姑丈用烏克麗麗彈奏著
她最喜歡的夏威夷歌曲，
她最喜歡的夏威夷歌曲，
00:44
all the way down to Kalaupapa.
12
32327
1677
一路回到達卡勞帕帕。
00:46
You see, as a youngster,
13
34730
1501
當時還是小朋友的我，
00:48
I was always curious about a few things.
14
36255
1936
我總是對一些事情感到好奇。
00:50
First was why a Belgian missionary
chose to live in complete isolation
chose to live in complete isolation
15
38681
5050
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，
的卡勞帕帕生活，
00:55
in Kalaupapa,
16
43755
1190
00:56
knowing he would inevitably
contract leprosy
contract leprosy
17
44969
2230
而且還有可能會從
他幫助的社區居民那邊
他幫助的社區居民那邊
00:59
from the community of people
he sought to help.
he sought to help.
18
47223
2380
感染到痲瘋病。
01:02
And secondly,
19
50256
2337
第二，
01:04
where did the leprosy bacteria come from?
20
52617
2361
這些痲瘋病細菌是從哪裡來的？
01:07
And why were Kānaka Maoli,
21
55002
1755
為什麼夏威夷的土著居民，
01:08
the indigenous people of Hawaii,
22
56781
2249
01:11
so susceptible to developing
leprosy, or "mai Pake?"
leprosy, or "mai Pake?"
23
59054
4362
這麼這麼容易感染到痲瘋病？
01:15
This got my curious about what
makes us unique as Hawaiians --
makes us unique as Hawaiians --
24
63853
3730
這讓我感到很好奇，
為什麼只有夏威夷人？
為什麼只有夏威夷人？
01:19
namely, our genetic makeup.
25
67607
1841
結果答案是：我們基因。
01:22
But it wasn't until high school,
26
70964
1944
但直到高中，
01:24
through the Human Genome Project,
27
72932
1612
在一次的人類基因專案中，
01:26
that I realized I wasn't alone
28
74568
2199
我才明白，我並不是唯一一個
01:28
in trying to connect
our unique genetic ancestry
our unique genetic ancestry
29
76791
2828
想要試從基因祖譜中
01:31
to our potential health,
wellness and illness.
wellness and illness.
30
79643
3682
了解我們潛在的
健康及疾病問題的人。
健康及疾病問題的人。
01:36
You see,
31
84061
1150
要知道，
01:37
the 2.7 billion-dollar project
32
85235
1799
這 27 億美金的研究計畫，
01:39
promised an era of predictive
and preventative medicine
and preventative medicine
33
87058
3990
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。
醫療時代。
01:43
based on our unique genetic makeup.
34
91072
2413
01:45
So to me it always seemed obvious
35
93849
1676
顯而易見
01:47
that in order to achieve this dream,
36
95549
2728
為了要完成這個夢想，
01:50
we would need to sequence
a diverse cohort of people
a diverse cohort of people
37
98301
4013
我們需要一大群多樣化的人種
01:54
to obtain the full spectrum
of human genetic variation on the planet.
of human genetic variation on the planet.
38
102338
3404
來取得地球上各樣人種的
完整基因圖譜。
完整基因圖譜。
01:58
That's why 10 years later,
39
106303
2572
這也是為什麼十年後，
02:00
it continues to shock me,
40
108899
1674
這件事不斷地衝擊著我，
02:02
knowing that 96 percent of genome studies
41
110597
3214
因為我發現到，
96% 與特定疾病有關的基因研究
02:05
associating common genetic variation
with specific diseases
with specific diseases
42
113835
3580
02:09
have focused exclusively
on individuals of European ancestry.
on individuals of European ancestry.
43
117439
3801
只著重在祖先是歐洲人的人群。
02:14
Now you don't need a PhD
44
122069
1409
各位不需要博士學位都能理解，
02:15
to see that that leaves four percent
for the rest of diversity.
for the rest of diversity.
45
123502
3033
有 4% 的人被遺棄了。
02:19
And in my own searching,
46
127164
2128
而且在我的研究中，
02:21
I've discovered that far less
than one percent
than one percent
47
129316
2509
我發現，
著重在像我這樣的原住民
的相關研究根本不到 1% 。
的相關研究根本不到 1% 。
02:23
have actually focused on indigenous
communities, like myself.
communities, like myself.
48
131849
3074
02:27
So that begs the question:
49
135481
2047
這衍伸出一個問題：
02:29
Who is the Human Genome
Project actually for?
Project actually for?
50
137552
2547
人類基因組計畫究竟是為誰而做的？
02:32
Just like we have
different colored eyes and hair,
different colored eyes and hair,
51
140853
2358
像我們，有不同的眼睛顏色與髮色，
02:35
we metabolize drugs differently
52
143235
1508
我們對藥物的新陳代謝不同，
02:36
based on the variation in our genomes.
53
144767
1867
因為我們有不同的基因組。
02:38
So how many of you
would be shocked to learn
would be shocked to learn
54
146978
3437
所以我不知道各位會不會感到驚訝，
02:42
that 95 percent of clinical trials
55
150439
2782
目前 95% 的臨床實驗，
02:45
have also exclusively featured
individuals of European ancestry?
individuals of European ancestry?
56
153245
4416
是專門為歐洲祖先的後代做的。
02:50
This bias
57
158387
1335
這種系統性
02:51
and systematic lack of engagement
of indigenous people
of indigenous people
58
159746
3841
對原住民缺乏合約精神的偏見，
02:55
in both clinical trials
and genome studies
and genome studies
59
163611
2984
不僅在臨床實驗上，
還有基因研究上都是。
還有基因研究上都是。
02:58
is partially the result
of a history of distrust.
of a history of distrust.
60
166619
2940
就是這些因素造成歷史上
種族不信任的部分原因。
種族不信任的部分原因。
03:02
For example,
61
170893
1150
舉個例子，
03:04
in 1989, researchers
from Arizona State University
from Arizona State University
62
172067
3929
1989年，亞利桑那州州立大學
的研究人員
的研究人員
03:08
obtained blood samples
from Arizona's Havasupai tribe,
from Arizona's Havasupai tribe,
63
176020
3566
在亞利桑那州哈瓦蘇部落
採集了血液的樣本，
採集了血液的樣本，
03:11
promising to alleviate the burden
of type 2 diabetes
of type 2 diabetes
64
179610
2934
承諾要降低社區的
2 型糖尿病的病情，
03:14
that was plaguing their community,
65
182568
1860
03:16
only to turn around and use
those exact same samples --
those exact same samples --
66
184452
3885
但是卻在沒有經過哈瓦蘇人的同意下，
03:20
without the Havasupai's consent --
67
188361
1703
拿了這些樣本
03:22
to study rates
of schizophrenia, inbreeding,
of schizophrenia, inbreeding,
68
190088
3505
去做精神分裂症、
近親繁殖的研究，
近親繁殖的研究，
03:25
and challenge
the Havasupai's origin story.
the Havasupai's origin story.
69
193617
2975
並挑戰哈瓦蘇部落的歷史起源。
03:29
When the Havasupai found out,
70
197319
2542
當哈瓦蘇人發現的時候，
03:31
they sued successfully for $700,000,
71
199885
3193
他們告上法院，
獲得 70 萬美金的賠償，
獲得 70 萬美金的賠償，
03:35
and they banned ASU from conducting
research on their reservation.
research on their reservation.
72
203102
5343
並禁止亞利桑那州立大學
繼續從事接下來的研究。
繼續從事接下來的研究。
03:40
This culminated in a sort of domino effect
73
208961
3254
這件事在美國西南部
造成了骨牌效應，
造成了骨牌效應，
03:44
with local tribes in the Southwest --
74
212239
1762
包括美國的最大部落，納瓦霍族，
03:46
including the Navajo Nation,
75
214025
1429
03:47
one of the largest
tribes in the country --
tribes in the country --
76
215478
2087
03:49
putting a moratorium on genetic research.
77
217589
2247
也叫停了一個基因的研究。
03:51
Now despite this history of distrust,
78
219860
2881
排除歷史上的不信任事件，
03:54
I still believe that indigenous people
can benefit from genetic research.
can benefit from genetic research.
79
222765
4475
我還是相信原住民可以在
基因研究上獲得好處。
基因研究上獲得好處。
03:59
And if we don't do something soon,
80
227264
2245
如果我們不盡快採取行動，
04:01
the gap in health disparities
is going to continue to widen.
is going to continue to widen.
81
229533
2867
醫療保健差距的鴻溝將會越來越大。
04:05
Hawaii, for example,
82
233113
1405
以夏威夷為例子，
04:06
has the longest life expectancy
on average of any state in the US,
on average of any state in the US,
83
234542
3707
在美國所有的州當中，
他們的平均壽命是最長的，
他們的平均壽命是最長的，
04:10
yet native Hawaiians like myself
84
238273
2857
但像我這樣的夏威夷人，
04:13
die a full decade
before our non-native counterparts,
before our non-native counterparts,
85
241154
3086
卻比非原住民的人要早 10 年去世，
04:16
because we have some
of the highest rates of type 2 diabetes,
of the highest rates of type 2 diabetes,
86
244264
4051
因為我們有 2 型糖尿病、
04:20
obesity,
87
248339
1151
肥胖症，
04:21
and the number one and number
two killers in the US:
two killers in the US:
88
249514
2525
和美國頭號和二號殺手疾病：
04:24
cardiovascular disease and cancer.
89
252063
1839
心血管疾病及癌症。
04:25
So how do we ensure
90
253926
1719
所以，我們要如何確保，
04:27
the populations of people
that need genome sequencing the most
that need genome sequencing the most
91
255669
3151
最需要基因定序的族群，
04:30
are not the last to benefit?
92
258844
1420
不會是最後才能受益？
04:32
My vision is to make
genetic research more native,
genetic research more native,
93
260671
4723
我的願景是要讓基因研究更貼近當地、
04:37
to indigenize genome
sequencing technology.
sequencing technology.
94
265418
2411
讓基因定序的科技更當地化。
04:40
Traditionally, genomes
are sequenced in laboratories.
are sequenced in laboratories.
95
268902
3031
傳統上，基因定序都是在實驗室中進行。
04:44
Here's an image of your classic
genome sequencer.
genome sequencer.
96
272555
2588
這裡有一張傳統基因定序儀器的照片。
04:47
It's huge.
97
275167
1151
它很大。
04:48
It's the size of a refrigerator.
98
276342
1752
差不多有一台冰箱的大小。
04:50
There's this obvious physical limitation.
99
278750
2067
所以它有空間上的限制。
04:53
But what if you could sequence
genomes on the fly?
genomes on the fly?
100
281321
3119
但如果你随时随地都可以
使用基因定序的儀器呢？
使用基因定序的儀器呢？
04:57
What if you could fit a genome
sequencer in your pocket?
sequencer in your pocket?
101
285210
3301
要是你可以把基因定序儀器
放進口袋呢？
放進口袋呢？
05:03
This nanopore-based sequencer
102
291848
2398
這台奈米孔徑的定序儀，
05:06
is one 10,000th the size
of your traditional genome sequencer.
of your traditional genome sequencer.
103
294270
4485
它只有傳統儀器的萬分之一倍。
05:10
It doesn't have the same
physical limitations,
physical limitations,
104
298779
2221
它沒有空間上限制的問題，
05:13
in that it's not tethered to a lab bench
with extraneous cords,
with extraneous cords,
105
301024
4276
它不需要用鐵鍊把它栓在
實驗室的板凳上，
實驗室的板凳上，
05:17
large vats of chemicals
or computer monitors.
or computer monitors.
106
305324
2525
也不用大量的化學物質和電腦螢幕。
05:20
It allows us to de-black box genome
sequencing technology development
sequencing technology development
107
308456
5151
它打破了基因定序科技發展的黑盒子，
05:25
in way that's immersive and collaborative,
108
313631
2612
運用著身臨其境般的協作方式，
05:28
activating and empowering
indigenous communities ...
indigenous communities ...
109
316267
2738
啟動並激勵原住民社群，
05:32
as citizen scientists.
110
320476
1441
成為市民科學家。
05:35
100 years later in Kalaupapa,
111
323092
2556
一百年後的卡勞帕帕，
05:37
we now have the technology to sequence
leprosy bacteria in real time,
leprosy bacteria in real time,
112
325672
4239
我們现在有即時性
獲取痲瘋病細菌定序的科技。
獲取痲瘋病細菌定序的科技。
05:41
using mobile genome sequencers,
113
329935
2888
這主要利用行動基因定序儀,
05:44
remote access to the Internet
114
332847
3009
透過網路，遠端存取
05:47
and cloud computation.
115
335880
1412
及雲端計算——
05:50
But only if that's what
Hawaiian people want.
Hawaiian people want.
116
338440
2588
只要夏威夷人想要——
在我們的土地，
05:54
In our space,
117
342074
1296
在我們的語言裡。
05:55
on our terms.
118
343394
1450
05:58
IndiGenomics is about science
for the people by the people.
for the people by the people.
119
346367
5805
本土基因學是為人而做，
由人而做的。
由人而做的。
06:04
We'll be starting with a tribal
consultation resource,
consultation resource,
120
352196
3945
我們會從部落諮詢
資源開始做起，
資源開始做起，
06:08
focused on educating
indigenous communities
indigenous communities
121
356165
3211
著重在原住民社區的教育上，
06:11
on the potential use and misuse
of genetic information.
of genetic information.
122
359400
3019
特別是正當和不當使用
基因資訊的影響。
基因資訊的影響。
06:14
Eventually we'd like to have our own
IndiGenomics research institute
IndiGenomics research institute
123
362861
3310
最後，我們會有我們自己的
在地研究機構
在地研究機構
06:18
to conduct our own experiments
124
366195
1429
進行我們自己的實驗，
06:19
and educate the next generation
of indigenous scientists.
of indigenous scientists.
125
367648
3135
同時教育出下一代的原住民科學家。
06:23
In the end,
126
371523
1561
最後，
06:25
indigenous people need to be partners in
and not subjects of genetic research.
and not subjects of genetic research.
127
373108
4592
原住民應該要參與其中，
而不是只有把自己當作研究對象，
而不是只有把自己當作研究對象，
06:30
And for those on the outside,
128
378179
1953
而對那些不是原住民的朋友來說，
06:32
just as Father Damien did,
129
380156
1484
應該學習達米安神父的精神
06:34
the research community needs
to immerse itself in indigenous culture
to immerse itself in indigenous culture
130
382625
4358
研究團體需要把自己
溶入到原住民文化中，
溶入到原住民文化中，
06:39
or die trying.
131
387007
1953
或者終生奉獻。
06:40
Mahalo.
132
388984
1205
謝謝 （夏威夷語）
06:42
(Applause)
133
390213
5000
（掌聲）
ABOUT THE SPEAKER
Keolu Fox - Geneticist, indigenous rights activistKeolu Fox explores the links between human genetic variation and disease in underrepresented populations.
Why you should listen
Keolu Fox's research interests include genome sequencing technologies, genome editing and indigenizing medical research. Fox is currently a PhD Candidate at the University of Washington, Department of Genome Sciences working with experts at Bloodworks Northwest, in Seattle, WA. His work focuses on the application of genome sequencing to increase compatibility for blood transfusion therapy and organ transplantation.
Along with fellow indigenous geneticists Katrina Claw (PhD) and Joe Yracheta, Fox co-founded IndiGenomics, a tribal non-profit organization with a mission of bringing genomic expertise to indigenous communities, empowering indigenous research capacity and positively contributing to health research with indigenous communities for present and future generations.
Recently Fox's work has been in the international media spotlight, with recognition in outlets such as Wired, the BBC, CBC, NPR, The Atlantic, Forbes, Indian Country Today and others. He was named a TED Fellow in 2016.
Keolu Fox | Speaker | TED.com