TED2016
Keolu Fox: Why genetic research must be more diverse
Kiolu Foks (Keolu Fox): Zašto genetska istraživanja moraju biti raznovrsnija
Filmed:
Readability: 6.7
939,979 views
Devedeset šest odsto istraživanja genoma je zasnovano na ljudima evropskog porekla. Ostatak sveta praktično nije zastupljen, a to je opasno, kaže genetičar i član TED Fellows programa, Kiolu Foks, jer različito reagujemo na lekove na osnovu našeg genetskog sastava. Foks radi na demokratizaciji sekvenciranja genoma, posebno se zalažući da se domorodački narodi uključe u istraživanje, sa ciljem eliminisanja zdravstvenih nejednakosti. „Istraživačka zajednica treba da uroni u domorodačku kulturu“, kaže on, „ili umre pokušavajući.“
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.
Kao malom dečaku sa Havaja,
00:12
As a little Hawaiian,
0
866
1205
moja mama i tetka
su mi uvek pričale priče o Kalaupapi -
su mi uvek pričale priče o Kalaupapi -
00:14
my mom and auntie always told me
stories about Kalaupapa --
stories about Kalaupapa --
1
2095
3382
havajskoj leproznoj koloniji
00:17
the Hawaiian leper colony
2
5501
1321
okruženoj najvišim
morskim stenama na svetu -
morskim stenama na svetu -
00:18
surrounded by the highest
sea cliffs in the world --
sea cliffs in the world --
3
6846
2827
i o Ocu Dejmijanu,
00:21
and Father Damien,
4
9697
1412
belgijskom misionaru koji je dao život
za havajsku zajednicu.
za havajsku zajednicu.
00:23
the Belgian missionary who gave his life
for the Hawaiian community.
for the Hawaiian community.
5
11133
3428
Kao mlada bolničarka, moja tetka
je obučavala monahinje koje su se starale
je obučavala monahinje koje su se starale
00:27
As a young nurse,
6
15102
1363
00:28
my aunt trained the nuns
caring for the remaining lepers
caring for the remaining lepers
7
16489
2941
o preostalim obolelim od lepre
skoro 100 godina
skoro 100 godina
00:31
almost a 100 years after
Father Damien died of leprosy.
Father Damien died of leprosy.
8
19454
3277
nakon što je Otac Dejmijan
umro od lepre.
umro od lepre.
00:36
I remember stories she told
9
24501
1671
Sećam se priča koje je pričala
o putovanju uzbrdo i nizbrdo
po stenovitim stazama na mazgi,
po stenovitim stazama na mazgi,
00:38
about traveling down
switchback cliff paths on a mule,
switchback cliff paths on a mule,
10
26196
2952
00:41
while my uncle played
her favorite hula songs on the ukulele
her favorite hula songs on the ukulele
11
29172
3131
dok je moj ujak svirao
njene omiljene hula pesme na ukuleleu
njene omiljene hula pesme na ukuleleu
sve do Kalaupape.
00:44
all the way down to Kalaupapa.
12
32327
1677
00:46
You see, as a youngster,
13
34730
1501
Vidite, kao dečaka,
00:48
I was always curious about a few things.
14
36255
1936
uvek me je zanimalo nekoliko stvari.
Prva je to zašto je belgijski misionar
odabrao da živi u potpunoj izolaciji
odabrao da živi u potpunoj izolaciji
00:50
First was why a Belgian missionary
chose to live in complete isolation
chose to live in complete isolation
15
38681
5050
00:55
in Kalaupapa,
16
43755
1190
u Kalaupapi,
znajući da će neizbežno
doći u kontakt sa leprom
doći u kontakt sa leprom
00:56
knowing he would inevitably
contract leprosy
contract leprosy
17
44969
2230
iz zajednice ljudi
kojima je nastojao da pomogne.
kojima je nastojao da pomogne.
00:59
from the community of people
he sought to help.
he sought to help.
18
47223
2380
01:02
And secondly,
19
50256
2337
Kao drugo,
01:04
where did the leprosy bacteria come from?
20
52617
2361
odakle potiče bakterija lepre
01:07
And why were Kānaka Maoli,
21
55002
1755
i zašto su Kanaka Maoli,
01:08
the indigenous people of Hawaii,
22
56781
2249
domorodački narod sa Havaja,
01:11
so susceptible to developing
leprosy, or "mai Pake?"
leprosy, or "mai Pake?"
23
59054
4362
tako podložni razvijanju lepre,
ili „mai pake“?
ili „mai pake“?
To me je zainteresovalo
01:15
This got my curious about what
makes us unique as Hawaiians --
makes us unique as Hawaiians --
24
63853
3730
za ono što nas Havajce čini jedinstvenim,
01:19
namely, our genetic makeup.
25
67607
1841
naime, za naš genetski sastav.
01:22
But it wasn't until high school,
26
70964
1944
Ipak, tek sam u srednjoj školi,
kroz „Projekat ljudskog genoma“,
01:24
through the Human Genome Project,
27
72932
1612
shvatio da nisam sam
01:26
that I realized I wasn't alone
28
74568
2199
01:28
in trying to connect
our unique genetic ancestry
our unique genetic ancestry
29
76791
2828
u pokušajima da povežem
naše jedinstveno genetsko nasleđe
naše jedinstveno genetsko nasleđe
01:31
to our potential health,
wellness and illness.
wellness and illness.
30
79643
3682
sa našim potencijalnim zdravljem,
blagostanjem i bolestima.
blagostanjem i bolestima.
01:36
You see,
31
84061
1150
Vidite,
projekat od 2,7 milijardi dolara
01:37
the 2.7 billion-dollar project
32
85235
1799
01:39
promised an era of predictive
and preventative medicine
and preventative medicine
33
87058
3990
obećao je eru medicine
koja predviđa i štiti
koja predviđa i štiti
01:43
based on our unique genetic makeup.
34
91072
2413
na osnovu našeg jedinstvenog
genetskog sastava.
genetskog sastava.
Stoga mi je uvek delovalo očigledno da,
01:45
So to me it always seemed obvious
35
93849
1676
01:47
that in order to achieve this dream,
36
95549
2728
da bismo ostvarili taj san,
01:50
we would need to sequence
a diverse cohort of people
a diverse cohort of people
37
98301
4013
moramo da sekvenciramo
raznovrsne grupe ljudi
raznovrsne grupe ljudi
01:54
to obtain the full spectrum
of human genetic variation on the planet.
of human genetic variation on the planet.
38
102338
3404
kako bismo obezbedili celokupni spektar
genetskih varijacija ljudi na planeti.
genetskih varijacija ljudi na planeti.
01:58
That's why 10 years later,
39
106303
2572
Iz tog razloga me, 10 godina kasnije,
02:00
it continues to shock me,
40
108899
1674
i dalje šokira
02:02
knowing that 96 percent of genome studies
41
110597
3214
to što znam da je 96 posto
istraživanja genoma
istraživanja genoma
koja vezuju zajedničke genetske varijacije
sa određenim bolestima
sa određenim bolestima
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
fokusirano isključivo na pojedince
sa evropskim poreklom.
sa evropskim poreklom.
02:14
Now you don't need a PhD
44
122069
1409
Ne treba vam doktorat
da uvidite da time ostaje četiri posto
za ostatak raznovrsnosti.
za ostatak raznovrsnosti.
02:15
to see that that leaves four percent
for the rest of diversity.
for the rest of diversity.
45
123502
3033
02:19
And in my own searching,
46
127164
2128
U sopstvenoj potrazi,
02:21
I've discovered that far less
than one percent
than one percent
47
129316
2509
otkrio sam da se
znatno ispod jednog procenta
znatno ispod jednog procenta
02:23
have actually focused on indigenous
communities, like myself.
communities, like myself.
48
131849
3074
zaista fokusiralo
na zajednice domorodaca, kao ja.
na zajednice domorodaca, kao ja.
02:27
So that begs the question:
49
135481
2047
To povlači pitanje
02:29
Who is the Human Genome
Project actually for?
Project actually for?
50
137552
2547
kome zapravo služi
„Projekat ljudskog genoma“?
„Projekat ljudskog genoma“?
02:32
Just like we have
different colored eyes and hair,
different colored eyes and hair,
51
140853
2358
Baš kao što imamo
oči i kosu različite boje,
oči i kosu različite boje,
02:35
we metabolize drugs differently
52
143235
1508
različito metabolišemo lekove
na osnovu varijacija u našim genomima.
02:36
based on the variation in our genomes.
53
144767
1867
02:38
So how many of you
would be shocked to learn
would be shocked to learn
54
146978
3437
Koliko vas bi bilo šokirano saznanjem
02:42
that 95 percent of clinical trials
55
150439
2782
da je 95 procenata kliničkih ispitivanja
02:45
have also exclusively featured
individuals of European ancestry?
individuals of European ancestry?
56
153245
4416
takođe isključivo izdvojilo
pojedince sa evropskim poreklom?
pojedince sa evropskim poreklom?
02:50
This bias
57
158387
1335
Ova pristrasnost
02:51
and systematic lack of engagement
of indigenous people
of indigenous people
58
159746
3841
i sistematični nedostatak
angažovanja domorodaca
angažovanja domorodaca
02:55
in both clinical trials
and genome studies
and genome studies
59
163611
2984
kako u kliničkim ispitivanjima,
tako i u istraživanjima genoma,
tako i u istraživanjima genoma,
02:58
is partially the result
of a history of distrust.
of a history of distrust.
60
166619
2940
delimično je rezultat
istorije nepoverenja.
istorije nepoverenja.
03:02
For example,
61
170893
1150
Na primer,
1989. godine, istraživači
sa Državnog univerziteta Arizone
sa Državnog univerziteta Arizone
03:04
in 1989, researchers
from Arizona State University
from Arizona State University
62
172067
3929
03:08
obtained blood samples
from Arizona's Havasupai tribe,
from Arizona's Havasupai tribe,
63
176020
3566
prikupili su uzorke krvi
iz plemena Havasupai u Arizoni,
iz plemena Havasupai u Arizoni,
03:11
promising to alleviate the burden
of type 2 diabetes
of type 2 diabetes
64
179610
2934
obećavši da će im olakšati teret
dijabetesa tipa 2
dijabetesa tipa 2
03:14
that was plaguing their community,
65
182568
1860
koji je harao njihovom zajednicom,
03:16
only to turn around and use
those exact same samples --
those exact same samples --
66
184452
3885
samo da bi to preokrenuli
i upotrebili te iste uzorke,
i upotrebili te iste uzorke,
03:20
without the Havasupai's consent --
67
188361
1703
bez saglasnosti plemena Havasupai,
03:22
to study rates
of schizophrenia, inbreeding,
of schizophrenia, inbreeding,
68
190088
3505
da izučavaju stope šizofrenije,
rađanje kod srodnika,
rađanje kod srodnika,
03:25
and challenge
the Havasupai's origin story.
the Havasupai's origin story.
69
193617
2975
kao i da ospore priču
o poreklu Havasupaija.
o poreklu Havasupaija.
03:29
When the Havasupai found out,
70
197319
2542
Kada su Havasupaji to otkrili,
03:31
they sued successfully for $700,000,
71
199885
3193
uspešno su ih tužili za 700 000 dolara
03:35
and they banned ASU from conducting
research on their reservation.
research on their reservation.
72
203102
5343
i zabranili su Univerzitetu sprovođenje
istraživanja u njihovom rezervatu.
istraživanja u njihovom rezervatu.
03:40
This culminated in a sort of domino effect
73
208961
3254
Ovo je kulminiralo
nekom vrstom domino efekta
nekom vrstom domino efekta
kada su lokalna plemena na jugozapadu -
03:44
with local tribes in the Southwest --
74
212239
1762
uključujući Naciju Navaho,
jedno od najvećih plemena u zemlji -
jedno od najvećih plemena u zemlji -
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
stala na kraj genetskim istraživanjima.
03:49
putting a moratorium on genetic research.
77
217589
2247
03:51
Now despite this history of distrust,
78
219860
2881
Uprkos ovoj istoriji nepoverenja,
03:54
I still believe that indigenous people
can benefit from genetic research.
can benefit from genetic research.
79
222765
4475
i dalje verujem da domorodački narodi mogu
imati koristi od genetskih istraživanja.
imati koristi od genetskih istraživanja.
03:59
And if we don't do something soon,
80
227264
2245
Ako nešto ne učinimo uskoro,
04:01
the gap in health disparities
is going to continue to widen.
is going to continue to widen.
81
229533
2867
jaz u pogledu zdravstvenih nejednakosti
nastaviće da se širi.
nastaviće da se širi.
04:05
Hawaii, for example,
82
233113
1405
Havaji, na primer,
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
imaju najduži očekivani životni vek
u proseku od svih zemalja SAD-a,
u proseku od svih zemalja SAD-a,
04:10
yet native Hawaiians like myself
84
238273
2857
a ipak, Havaji starosedeoci kao što sam ja
umiru čitavu deceniju pre naših stanovnika
koji nisu starosedeoci,
koji nisu starosedeoci,
04:13
die a full decade
before our non-native counterparts,
before our non-native counterparts,
85
241154
3086
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
jer spadaju među najviše
naše stope dijabetesa tipa 2,
naše stope dijabetesa tipa 2,
04:20
obesity,
87
248339
1151
gojaznosti,
kao i prvog i drugog najvećeg ubice u SAD,
04:21
and the number one and number
two killers in the US:
two killers in the US:
88
249514
2525
kardiovaskularnih oboljenja i raka.
04:24
cardiovascular disease and cancer.
89
252063
1839
Pa, kako da se osiguramo
da populacije ljudi
da populacije ljudi
04:25
So how do we ensure
90
253926
1719
04:27
the populations of people
that need genome sequencing the most
that need genome sequencing the most
91
255669
3151
kojima je najpotebnije
sekvenciranje genoma
sekvenciranje genoma
04:30
are not the last to benefit?
92
258844
1420
neće poslednje imati koristi?
04:32
My vision is to make
genetic research more native,
genetic research more native,
93
260671
4723
Moja vizija je da učinimo
da genetska istraživanja budu više domaća,
da genetska istraživanja budu više domaća,
04:37
to indigenize genome
sequencing technology.
sequencing technology.
94
265418
2411
da tehnologiju sekvenciranja genoma
otvorimo za urođenike.
otvorimo za urođenike.
04:40
Traditionally, genomes
are sequenced in laboratories.
are sequenced in laboratories.
95
268902
3031
Po običaju, genomi se sekvenciraju
u laboratorijama.
u laboratorijama.
04:44
Here's an image of your classic
genome sequencer.
genome sequencer.
96
272555
2588
Evo slike klasičnog sekvenatora genoma.
04:47
It's huge.
97
275167
1151
Ogroman je.
04:48
It's the size of a refrigerator.
98
276342
1752
Veličine je frižidera.
04:50
There's this obvious physical limitation.
99
278750
2067
Postoji to očigledno fizičko ograničenje.
04:53
But what if you could sequence
genomes on the fly?
genomes on the fly?
100
281321
3119
Međutim, šta ako biste mogli
da sekvencirate genome u letu?
da sekvencirate genome u letu?
04:57
What if you could fit a genome
sequencer in your pocket?
sequencer in your pocket?
101
285210
3301
Šta ako biste mogli da smestite
sekvenator genoma u svoj džep?
sekvenator genoma u svoj džep?
05:03
This nanopore-based sequencer
102
291848
2398
Ovaj sekvenator zasnovan na nanoporama
05:06
is one 10,000th the size
of your traditional genome sequencer.
of your traditional genome sequencer.
103
294270
4485
je desethiljaditi deo
tradicionalnog sekvenatora genoma.
tradicionalnog sekvenatora genoma.
05:10
It doesn't have the same
physical limitations,
physical limitations,
104
298779
2221
Nema ista fizička ograničenja,
05:13
in that it's not tethered to a lab bench
with extraneous cords,
with extraneous cords,
105
301024
4276
u pogledu toga da nije privezan
za laboratoriju spoljnim kablovima,
za laboratoriju spoljnim kablovima,
05:17
large vats of chemicals
or computer monitors.
or computer monitors.
106
305324
2525
za velike kace hemikalija
ili kompjuterske monitore.
ili kompjuterske monitore.
05:20
It allows us to de-black box genome
sequencing technology development
sequencing technology development
107
308456
5151
Omogućava nam da pojednostavimo
razvoj tehnologije sekvenciranja genoma
razvoj tehnologije sekvenciranja genoma
05:25
in way that's immersive and collaborative,
108
313631
2612
na način koji je obuhvatan
i podstiče saradnju,
i podstiče saradnju,
05:28
activating and empowering
indigenous communities ...
indigenous communities ...
109
316267
2738
aktivira i osnažuje domorodačke zajednice
05:32
as citizen scientists.
110
320476
1441
kao građane-naučnike.
05:35
100 years later in Kalaupapa,
111
323092
2556
Sto godina kasnije u Kalaupapi,
05:37
we now have the technology to sequence
leprosy bacteria in real time,
leprosy bacteria in real time,
112
325672
4239
sada imamo tehnologiju za sekvenciranje
bakterije lepre u realnom vremenu,
bakterije lepre u realnom vremenu,
05:41
using mobile genome sequencers,
113
329935
2888
korišćenjem pokretnog sekvenatora genoma,
05:44
remote access to the Internet
114
332847
3009
daljinskog pristupa internetu
05:47
and cloud computation.
115
335880
1412
i računarstva u oblaku,
05:50
But only if that's what
Hawaiian people want.
Hawaiian people want.
116
338440
2588
ali samo ako havajski narod to želi.
05:54
In our space,
117
342074
1296
Na našem prostoru,
05:55
on our terms.
118
343394
1450
pod našim uslovima.
05:58
IndiGenomics is about science
for the people by the people.
for the people by the people.
119
346367
5805
„Indidžinomiks“ se odnosi na nauku
za narod koju sprovodi narod.
za narod koju sprovodi narod.
06:04
We'll be starting with a tribal
consultation resource,
consultation resource,
120
352196
3945
Započećemo resursom
plemenskih konsultacija,
plemenskih konsultacija,
06:08
focused on educating
indigenous communities
indigenous communities
121
356165
3211
fokusiranih na obrazovanje
domorodačkih zajednica
domorodačkih zajednica
06:11
on the potential use and misuse
of genetic information.
of genetic information.
122
359400
3019
o potencijalnoj upotebi
i zloupotrebi genetskih informacija.
i zloupotrebi genetskih informacija.
Na kraju bismo voleli da imamo
06:14
Eventually we'd like to have our own
IndiGenomics research institute
IndiGenomics research institute
123
362861
3310
naš institut
za istraživanje „Indidžinomiks“,
za istraživanje „Indidžinomiks“,
da sprovodimo sopstvene eksperimente
06:18
to conduct our own experiments
124
366195
1429
06:19
and educate the next generation
of indigenous scientists.
of indigenous scientists.
125
367648
3135
i obrazujemo sledeću generaciju
domorodačkih naučnika.
domorodačkih naučnika.
06:23
In the end,
126
371523
1561
Na kraju,
06:25
indigenous people need to be partners in
and not subjects of genetic research.
and not subjects of genetic research.
127
373108
4592
urođenički narodi treba da budu partneri,
a ne subjekti u genetskim istraživanjima.
a ne subjekti u genetskim istraživanjima.
06:30
And for those on the outside,
128
378179
1953
Za one spolja,
06:32
just as Father Damien did,
129
380156
1484
baš kao što je Otac Dejmijan uradio,
06:34
the research community needs
to immerse itself in indigenous culture
to immerse itself in indigenous culture
130
382625
4358
istraživačka zajednica treba da uroni
u domorodačku kulturu
u domorodačku kulturu
06:39
or die trying.
131
387007
1953
ili umre pokušavajući.
06:40
Mahalo.
132
388984
1205
Hvala.
06:42
(Applause)
133
390213
5000
(Aplauz)
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