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Tania Simoncelli: Should you be able to patent a human gene?
Tania Simoncelli: Como desafiamos á industria das patentes xenéticas... e gañamos
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Son patentábeis os xenes humanos? No 2005, cando Tania Simoncelli pensou por primeira vez nesta revirada cuestión, a lei de patentes estadounidense contestoulle afirmativamente, o que significaba que os titulares das patentes tiñan o dereito de impedir que alguén determinase a secuencia, probase ou mesmo ollase xenes patentados. Molesta por como esta lei prexudicaba ós pacientes e lle puña trabas á innovación biomédica, Simoncelli e os seus compañeiros do ACLU enfrontáronse a iso. Esta fascinante conferencia fala de como arrostraron un caso que todo o mundo daba por perdido e que chegou ata a Corte Suprema dos Estados Unidos.
Tania Simoncelli - Policy expert
Tania Simoncelli advises the White House on science and technology policy. Full bio
Tania Simoncelli advises the White House on science and technology policy. Full bio
Double-click the English transcript below to play the video.
00:13
It was an afternoon in the fall of 2005.
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Era unha tarde de outono de 2005.
00:17
I was working at the ACLU
as the organization's science advisor.
as the organization's science advisor.
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Traballaba de asesora científica na ACLU,
a Unión polas Liberdades Civís.
a Unión polas Liberdades Civís.
00:21
I really, really loved my job,
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Encantábame o meu traballo,
00:24
but I was having one of those days
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pero precisamente ese día
00:25
where I was feeling
just a little bit discouraged.
just a little bit discouraged.
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sentíame un chisco desanimada.
00:29
So I wandered down the hallway
to my colleague Chris Hansen's office.
to my colleague Chris Hansen's office.
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Así que me acheguei ata o despacho
do meu compañeiro Chris Hansen.
do meu compañeiro Chris Hansen.
00:34
Chris had been at the ACLU
for more than 30 years,
for more than 30 years,
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Chris levaba máis de 30 anos
traballando na ACLU,
traballando na ACLU,
00:38
so he had deep institutional
knowledge and insights.
knowledge and insights.
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polo que coñecía ben
o funcionamento das institucións.
o funcionamento das institucións.
00:41
I explained to Chris
that I was feeling a little bit stuck.
that I was feeling a little bit stuck.
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Díxenlle a Chris
que me sentía un chisco trabada.
que me sentía un chisco trabada.
00:45
I had been investigating
a number of issues
a number of issues
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Eu estaba investigando
unha serie de cuestións
unha serie de cuestións
00:47
at the intersection of science
and civil liberties -- super interesting.
and civil liberties -- super interesting.
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sobre o cruzamento de ciencia
e liberdades civís: moi interesante.
e liberdades civís: moi interesante.
00:53
But I wanted the ACLU to engage
these issues in a much bigger way,
these issues in a much bigger way,
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Pero quería que a ACLU abordase
estes problemas máis de cara,
estes problemas máis de cara,
00:56
in a way that could really
make a difference.
make a difference.
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dun xeito que puidese
supor unha diferenza.
supor unha diferenza.
01:01
So Chris cut right
to the chase, and he says,
to the chase, and he says,
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Chris foi directo ó gran e preguntoume:
01:03
"Well, of all the issues you've been
looking at, what are the top five?"
looking at, what are the top five?"
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"De todas esas cuestións,
cales son as cinco que máis te inquietan?"
cales son as cinco que máis te inquietan?"
01:07
"Well, there's genetic discrimination,
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"Pois está a da discriminación xenética,
01:10
and reproductive technologies,
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as tecnoloxías reprodutivas,
01:12
and biobanking, and ...
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os biobancos e...
01:14
oh, there's this really cool issue,
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vaites, tamén hai unha xenial,
01:16
functional MRI and using it
for lie detection, and ...
for lie detection, and ...
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o emprego das IMRf
como detector de mentiras e...
como detector de mentiras e...
01:19
oh, and of course, there's gene patents."
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claro, o tema das patentes xenéticas".
01:21
"Gene patents?"
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"Patentes xenéticas?"
01:23
"Yes, you know, patents on human genes."
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"Si, iso é, patentes de xenes humanos".
01:26
"No!
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"Non!"
01:27
You're telling me that the US government
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"Estasme dicindo que
o goberno estadounidense
o goberno estadounidense
01:30
has been issuing patents
on part of the human body?
on part of the human body?
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expide patentes de partes do corpo humano?
01:33
That can't be right."
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Non pode ser".
01:35
I went back to my office
and sent Chris three articles.
and sent Chris three articles.
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Volvín para o meu despacho
e envieille a Chris tres artigos.
e envieille a Chris tres artigos.
01:39
And 20 minutes later,
he came bursting in my office.
he came bursting in my office.
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E 20 minutos despois,
chegou el botando centellas.
chegou el botando centellas.
01:43
"Oh my god! You're right! Who can we sue?"
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"Raios! Tiñas razón!
A quen hai que demandar?"
A quen hai que demandar?"
01:47
(Laughter)
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(Risos)
01:49
Now Chris is a really brilliant lawyer,
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E é que Chris é un grande avogado,
01:52
but he knew almost nothing
about patent law
about patent law
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pero non sabía case nada
sobre lexislación de patentes
sobre lexislación de patentes
01:55
and certainly nothing about genetics.
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e absolutamente nada sobre xenética.
01:57
I knew something about genetics,
but I wasn't even a lawyer,
but I wasn't even a lawyer,
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Eu sabia algo sobre xenética,
pero non era avogada,
pero non era avogada,
02:00
let alone a patent lawyer.
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moito menos avogada de patentes.
02:02
So clearly we had a lot to learn
before we could file a lawsuit.
before we could file a lawsuit.
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Quedaba claro que había moito que aprender
antes de demandar a ninguén.
antes de demandar a ninguén.
02:06
First, we needed to understand
exactly what was patented
exactly what was patented
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Primeiro, tiñamos que saber
exactamente qué se patentaba
exactamente qué se patentaba
02:08
when someone patented a gene.
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cando alguén patentaba un xene.
02:11
Gene patents typically contain
dozens of claims,
dozens of claims,
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As patentes xenéticas adoitan
incluír ducias de reivindicacións,
incluír ducias de reivindicacións,
02:15
but the most controversial of these
are to so-called "isolated DNA" --
are to so-called "isolated DNA" --
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pero as máis discutidas de todas
son as chamadas "ADN illado"
son as chamadas "ADN illado"
02:20
namely, a piece of DNA
that has been removed from a cell.
that has been removed from a cell.
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ou sexa, un anaco de ADN
que se extraeu dunha célula.
que se extraeu dunha célula.
02:26
Gene patent proponents say,
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Os defensores disto din:
02:27
"See? We didn't patent
the gene in your body,
the gene in your body,
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"Non patentamos os xenes do voso corpo,
02:30
we patented an isolated gene."
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patentamos os xenes illados".
02:33
And that's true,
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E é verdade,
02:34
but the problem is that any use
of the gene requires that it be isolated.
of the gene requires that it be isolated.
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mais o problema radica en que
é preciso illar os xenes para utilizalos.
é preciso illar os xenes para utilizalos.
02:42
And the patents weren't just
to a particular gene that they isolated,
to a particular gene that they isolated,
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E as patentes non cobren
un xene illado en particular,
un xene illado en particular,
02:46
but on every possible
version of that gene.
version of that gene.
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senón todas as posibles
versións dese xene.
versións dese xene.
02:50
So what does that mean?
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E que significa isto?
02:51
That means that you can't give
your gene to your doctor
your gene to your doctor
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Pois que non lle podes pasar
os teus xenes a un médico
os teus xenes a un médico
02:55
and ask him or her to look at it,
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e pedirlle que os examine,
02:57
say, to see if it has any mutations,
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para ver se conteñen mutacións,
02:59
without permission of the patent holder.
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sen o permiso do titular da patente.
03:02
It also means that the patent holder
has the right to stop anyone
has the right to stop anyone
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Tamén implica que o titular da patente
ten o dereito de impedir
ten o dereito de impedir
03:06
from using that gene
in research or clinical testing.
in research or clinical testing.
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que ese xene se empregue
en investigacións ou ensaios clínicos.
en investigacións ou ensaios clínicos.
03:10
Allowing patent holders,
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Permitir que estes titulares,
03:12
often private companies,
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a miúdo empresas privadas,
03:13
to lock up stretches of the human genome
was harming patients.
was harming patients.
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fechen partes do xenoma humano
estaba a prexudicar ós pacientes.
estaba a prexudicar ós pacientes.
03:18
Consider Abigail,
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Temos o caso de Abigail,
03:20
a 10-year-old with long QT syndrome,
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una pequena de 10 anos
con síndrome do QT longo,
con síndrome do QT longo,
03:22
a serious heart condition that,
if left untreated,
if left untreated,
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unha doenza cardíaca que, se non se trata,
03:25
can result in sudden death.
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pode provocar a morte súbita.
03:28
The company that obtained a patent on two
genes associated with this condition
genes associated with this condition
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A empresa que patentou
os dous xenes asociados a esta doenza
os dous xenes asociados a esta doenza
03:32
developed a test to diagnose the syndrome.
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creara unha proba
para diagnosticar a síndrome.
para diagnosticar a síndrome.
03:35
But then they went bankrupt
and they never offered it.
and they never offered it.
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Pero entón entrou en bancarrota
e nunca chegaron a ofrecela.
e nunca chegaron a ofrecela.
Outro laboratorio tentou ofrecer a proba,
03:39
So another lab tried to offer the test,
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03:41
but the company that held the patents
threatened to sue the lab
threatened to sue the lab
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pero a empresa que posuía as patentes
ameazou con demandalos
ameazou con demandalos
03:44
for patent infringement.
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por infrinxir a patente.
03:45
So as a result,
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O resultado:
03:46
for 2 years, no test was available.
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dous anos sen poder facer a proba.
03:50
During that time,
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Durante ese tempo,
03:51
Abigail died of undiagnosed long QT.
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Abigail morreu de QT longo
sen diagnosticar.
sen diagnosticar.
03:55
Gene patents clearly were a problem
and were harming patients.
and were harming patients.
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As patentes xenéticas eran un problema
que prexudicaba ós pacientes.
que prexudicaba ós pacientes.
03:59
But was there a way
we could challenge them?
we could challenge them?
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Habería algunha forma de facerlles fronte?
04:02
Turns out that the Supreme Court
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Pois resulta que o Tribunal Supremo
04:04
has made clear
through a long line of cases,
through a long line of cases,
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deixou claro nunha longa lista
de casos anteriores,
de casos anteriores,
04:07
that certain things
are not patent eligible.
are not patent eligible.
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que existen unha serie de cousas
que non son patentábeis.
que non son patentábeis.
04:10
You can't patent products of nature --
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Non se poden patentar
produtos da natureza:
produtos da natureza:
04:14
the air, the water, minerals,
elements of the periodic table.
elements of the periodic table.
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o aire, a auga, os minerais,
os elementos da táboa periódica.
os elementos da táboa periódica.
04:19
And you can't patent laws of nature --
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Nin tampouco as leis da natureza:
04:22
the law of gravity, E = mc2.
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a lei da gravidade, E = mc2.
04:24
These things are just too fundamental
and must remain free to all
and must remain free to all
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Son cousas moi fundamentais
e deben de estar ó alcance de todos,
e deben de estar ó alcance de todos,
ninguén pode posuílas en exclusividade.
04:29
and reserved exclusively to none.
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04:32
It seemed to us that DNA,
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Na nosa opinión o ADN,
04:34
the most fundamental structure of life,
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a estrutura da vida máis fundamental,
04:37
that codes for the production
of all of our proteins,
of all of our proteins,
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que codifica a produción
de todas as nosas proteínas,
de todas as nosas proteínas,
04:39
is both a product of nature
and a law of nature,
and a law of nature,
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é tanto un produto da natureza
coma unha lei da natureza,
coma unha lei da natureza,
04:42
regardless of whether it's in our bodies
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independentemente
de que se atope nos nosos corpos
de que se atope nos nosos corpos
04:45
or sitting in the bottom of a test tube.
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ou no fondo dunha probeta.
04:48
As we delved into this issue,
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Para informarnos mellor,
04:50
we traveled all over the country
to speak with many different experts --
to speak with many different experts --
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viaxamos por todo o país
para falar con distintos expertos:
para falar con distintos expertos:
04:54
scientists, medical professionals,
lawyers, patent lawyers.
lawyers, patent lawyers.
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científicos, profesionais médicos,
avogados, avogados de patentes.
avogados, avogados de patentes.
04:58
Most of them agreed that we were right
as a matter of policy,
as a matter of policy,
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A maioría dixéronnos que tiñamos razón
desde un punto de vista político,
desde un punto de vista político,
05:02
and, at least in theory,
as a matter of law.
as a matter of law.
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e, cando menos en teoría,
desde un punto de vista legal.
desde un punto de vista legal.
05:06
All of them thought
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Todos eles pensaban
05:07
our chances of winning
a gene-patent challenge
a gene-patent challenge
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que as posibilidades
de saír coa nosa neste tema
de saír coa nosa neste tema
05:10
were about zero.
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eran tantas coma cero.
05:13
Why is that?
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Pero por que?
05:15
Well, the patent office
had been issuing these patents
had been issuing these patents
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Resulta que a oficina de patentes
leva emitindo estas patentes
leva emitindo estas patentes
05:18
for more than 20 years.
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máis de 20 anos.
05:20
There were literally thousands
of patents on human genes.
of patents on human genes.
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Literalmente, había milleiros
de patentes de xenes humanos.
de patentes de xenes humanos.
05:24
The patent bar was deeply
entrenched in the status quo,
entrenched in the status quo,
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O tribunal de patentes estaba
moi atrincheirado no statu quo,
moi atrincheirado no statu quo,
05:28
the biotech industry had grown up
around this practice,
around this practice,
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a industria da biotecnoloxía medrara
arredor desta práctica,
arredor desta práctica,
05:32
and legislation to ban gene patents
had been introduced
had been introduced
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e a lexislación para prohibir
as patentes xenéticas presentárase
as patentes xenéticas presentárase
05:35
year after year in Congress,
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ano tras ano ó Congreso,
05:36
and had gone absolutely nowhere.
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sen saír xamais adiante.
05:39
So the bottom line:
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En resumo:
05:41
courts just weren't going to be willing
to overturn these patents.
to overturn these patents.
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os tribunais non ían estar dispostos
a anular estas patentes.
a anular estas patentes.
05:44
Now, neither Chris nor I were the type
to shy away from a challenge,
to shy away from a challenge,
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Mais, nin a Chris nin a min
nos poñen medo os retos,
nos poñen medo os retos,
05:49
and hearing, "Being right
just isn't enough,"
just isn't enough,"
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e que nos dixeran, "ter razón non abonda",
05:52
seemed all the more reason
to take on this fight.
to take on this fight.
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dábanos máis folgos para seguir loitando.
05:56
So we set out to build our case.
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Así que comezamos a fixar a nosa causa.
05:59
Now, patent cases tend to be:
Company A sues Company B
Company A sues Company B
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Os xuízos por patentes adoitan ser:
Empresa A demanda a Empresa B
Empresa A demanda a Empresa B
06:03
over some really narrow,
obscure technical issue.
obscure technical issue.
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por algún tema técnico, escuro e confuso.
06:06
We weren't really interested
in that kind of case,
in that kind of case,
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A nós non nos interesaban
aquel tipo de causas,
aquel tipo de causas,
06:09
and we thought this case
was much bigger than that.
was much bigger than that.
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pensamos que a nosa causa
abranguía moito máis.
abranguía moito máis.
06:11
This was about scientific freedom,
medical progress,
medical progress,
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Tratábase da liberdade científica,
o progreso médico
o progreso médico
06:14
the rights of patients.
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e os dereitos dos pacientes.
06:15
So we decided we were going
to develop a case
to develop a case
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Así que decidimos abrir unha causa
06:18
that was not like
your typical patent case --
your typical patent case --
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que non sería coma
as típicas que hai por patentes,
as típicas que hai por patentes,
06:21
more like a civil rights case.
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senón unha causa
a prol dos dereitos civís.
a prol dos dereitos civís.
06:24
We set out to identify
a gene-patent holder
a gene-patent holder
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Propuxémonos identificar
un titular de patentes xenéticas
un titular de patentes xenéticas
06:27
that was vigorously enforcing its patents
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que estivese a defender
tenazmente as súas patentes
tenazmente as súas patentes
06:30
and then to organize a broad coalition
of plaintiffs and experts
of plaintiffs and experts
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para despois organizarmos
unha coalición de demandantes e expertos
unha coalición de demandantes e expertos
06:33
that could tell the court
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que lles contasen ós tribunais
06:35
about all the ways that these patents
were harming patients and innovation.
were harming patients and innovation.
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como estas patentes actuaban
en detrimento de pacientes e innovación.
en detrimento de pacientes e innovación.
06:41
We found the prime candidate
to sue in Myriad Genetics,
to sue in Myriad Genetics,
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Achamos que o candidato ideal
para demandar era Myriad Genetics,
para demandar era Myriad Genetics,
06:44
a company that's based
in Salt Lake City, Utah.
in Salt Lake City, Utah.
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unha empresa con sede
en Salt Lake City, Utah.
en Salt Lake City, Utah.
06:48
Myriad held patents on two genes,
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Myriad posuía as patentes de dous xenes,
06:50
the BRCA1 and the BRCA2 genes.
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os xenes BRCA1 e o BRCA2.
06:55
Women with certain mutations
along these genes
along these genes
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As mulleres
con certas mutacións nestes xenes
con certas mutacións nestes xenes
06:57
are considered to be
at a significantly increased risk
at a significantly increased risk
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teñen máis probabilidades
07:00
of developing breast and ovarian cancer.
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de padecer cancro de peito e de ovario.
Myriad empregara as patentes para manter
07:03
Myriad had used its patents to maintain
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07:05
a complete monopoly on BRCA testing
in the United States.
in the United States.
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un monopolio total sobre
as probas de BCRA nos Estados Unidos.
as probas de BCRA nos Estados Unidos.
07:10
It had forced multiple labs
that were offering BRCA testing to stop.
that were offering BRCA testing to stop.
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Fixo que varios laboratorios
deixasen de ofrecer probas de BCRA.
deixasen de ofrecer probas de BCRA.
07:14
It charged a lot of money for its test --
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Cobraban moitos cartos polo seu exame:
07:16
over 3,000 dollars.
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máis de 3.000 dólares.
07:19
It had stopped sharing its clinical data
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Deixaran de compartir
os seus datos clínicos
os seus datos clínicos
07:21
with the international
scientific community.
scientific community.
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2287
coa comunidade científica internacional.
07:24
And perhaps worst of all,
141
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1903
E, se callar o peor de todo,
07:26
for a period of several years,
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434449
2436
durante un período de varios anos,
07:28
Myriad refused to update its test
to include additional mutations
to include additional mutations
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436909
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Myriad negouse a actualizar o seu exame
para que incluíse mutacións adicionais
para que incluíse mutacións adicionais
07:32
that had been identified
by a team of researchers in France.
by a team of researchers in France.
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que foran identificadas por un equipo
de investigadores en Francia.
de investigadores en Francia.
07:36
It has been estimated
that during that period,
that during that period,
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444974
2508
Estimouse que durante ese período,
07:39
for several years,
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1373
durante varios anos,
07:40
as many as 12 percent of women
undergoing testing
undergoing testing
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448903
3752
ata un 12% das mulleres
ás que lles fixeran a proba
ás que lles fixeran a proba
07:44
received the wrong answer --
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recibiran una resposta errada:
07:48
a negative test result
that should have been positive.
that should have been positive.
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un resultado negativo
que debería de ser positivo.
que debería de ser positivo.
07:53
This is Kathleen Maxian.
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Esta é Kathleen Maxian.
07:56
Kathleen's sister Eileen
developed breast cancer at age 40
developed breast cancer at age 40
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A irmá de Kathleen, Eileen,
desenvolveu cancro con 40 anos
desenvolveu cancro con 40 anos
07:59
and she was tested by Myriad.
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1840
e fixo os exames con Myriad.
08:02
The test was negative.
153
470032
1726
O exame deu negativo.
08:03
The family was relieved.
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471782
1526
A familia acougou.
08:05
That meant that Eileen's cancer
most likely didn't run in the family,
most likely didn't run in the family,
155
473332
3788
O máis probable era que ese cancro
non estivese presente na familia,
non estivese presente na familia,
08:09
and that other members of her family
didn't need to be tested.
didn't need to be tested.
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477144
3015
polo que os outros membros da familia
non precisaban facer o exame.
non precisaban facer o exame.
08:12
But two years later,
157
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1230
Mais dous anos despois,
08:14
Kathleen was diagnosed
with advanced-stage ovarian cancer.
with advanced-stage ovarian cancer.
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a Kathleen diagnosticáronlle
un cancro de ovario en estado avanzado.
un cancro de ovario en estado avanzado.
08:18
It turned out that Kathleen's sister
was among the 12 percent
was among the 12 percent
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486927
3872
Resultou que a irmá de Kathleen
encontrábase entre ese 12%
encontrábase entre ese 12%
08:22
who received a false-negative test result.
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490823
2869
de persoas que recibiron
un resultado negativo falso.
un resultado negativo falso.
08:26
Had Eileen received the proper result,
161
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3089
Se Eileen recibise o resultado correcto,
08:29
Kathleen would have then been tested,
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Kathleen faría o exame,
08:31
and her ovarian cancer
could have been prevented.
could have been prevented.
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499857
2913
e evitaría o seu cancro de ovario.
Unha vez que nos decidimos
por Myriad,
por Myriad,
08:36
Once we settled on Myriad,
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08:38
we then had to form a coalition
of plaintiffs and experts
of plaintiffs and experts
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3885
tivemos que formar unha coalición
de demandantes e expertos
de demandantes e expertos
08:42
that could illuminate these problems.
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2088
que puidesen aclarar estes problemas.
Acabamos xuntando
20 demandantes moi comprometidos:
20 demandantes moi comprometidos:
08:44
We ended up with 20
highly committed plaintiffs:
highly committed plaintiffs:
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08:47
genetic counselors,
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conselleiros xenéticos,
xenetistas que recibiran
cartas ameazantes,
cartas ameazantes,
08:48
geneticists who had received
cease and desist letters,
cease and desist letters,
169
516887
3359
08:52
advocacy organizations,
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520905
1849
organizacións de defensa,
08:55
four major scientific organizations
that collectively represented
that collectively represented
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523532
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catro organizacións científicas
que en conxunto representaban
que en conxunto representaban
08:58
more than 150,000 scientists
and medical professionals,
and medical professionals,
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526621
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a máis de 150.000 científicos
e profesionais médicos,
e profesionais médicos,
09:02
and individual women who either
couldn't afford Myriad's test,
couldn't afford Myriad's test,
173
530755
3297
e mulleres individuais que ou ben
non podían pagar o exame de Myriad,
non podían pagar o exame de Myriad,
09:06
or who wanted to obtain
a second opinion but could not,
a second opinion but could not,
174
534076
3004
ou ben querían una segunda opinión
que non lles podían dar,
que non lles podían dar,
09:09
as a result of the patents.
175
537104
1744
por mor das patentes.
09:12
One of the major challenges
we had in preparing the case
we had in preparing the case
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Un dos principais retos
que afrontamos cando preparamos este caso
que afrontamos cando preparamos este caso
09:15
was figuring out how best
to communicate the science.
to communicate the science.
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foi pensar a forma
na que explicar a ciencia.
na que explicar a ciencia.
09:19
So in order to argue that what Myriad did
was not an invention,
was not an invention,
178
547079
3831
Para argumentar que o que fixera
Myriad non era un invento,
Myriad non era un invento,
09:22
and that isolated BRCA genes
were products of nature,
were products of nature,
179
550934
3277
e que os xenes illados BRCA
eran produtos da natureza,
eran produtos da natureza,
09:27
we had to explain a couple
of basic concepts, like:
of basic concepts, like:
180
555124
2713
tivemos que explicar un par
de conceptos básicos, do tipo:
de conceptos básicos, do tipo:
09:29
What's a gene? What's DNA?
181
557861
2144
Que é un xene? Que é o ADN?
09:32
How is DNA isolated,
and why isn't that an invention?
and why isn't that an invention?
182
560029
3716
Como se illa o ADN,
e por que iso non é un invento?
e por que iso non é un invento?
09:37
We spent hours and hours
with our plaintiffs and experts,
with our plaintiffs and experts,
183
565168
3862
Pasamos horas e horas
cos nosos demandantes e expertos,
cos nosos demandantes e expertos,
09:41
trying to come up with ways
of explaining these concepts
of explaining these concepts
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tentando dar coa forma
de explicar estes conceptos
de explicar estes conceptos
09:44
simply yet accurately.
185
572014
1543
de forma sinxela mais certeira.
09:46
And we ended up relying heavily
on the use of metaphors,
on the use of metaphors,
186
574306
3332
E ao final acabamos por botar man
das metáforas,
das metáforas,
09:49
like gold.
187
577662
1156
coma a do ouro.
09:51
So isolating DNA --
188
579789
2284
Así que illar ADN
09:54
it's like extracting gold from a mountain
189
582097
2500
é coma extraer ouro dunha montaña.
09:57
or taking it out of a stream bed.
190
585105
2016
ou do leito dun río.
09:59
You might be able to patent
the process for mining the gold,
the process for mining the gold,
191
587145
3674
Pódese patentar o proceso
para extraer ouro,
para extraer ouro,
10:02
but you can't patent the gold itself.
192
590843
2081
pero non podes patentar o propio ouro.
10:05
It might've taken a lot
of hard work and effort
of hard work and effort
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2743
Tanto ten canto traballo se requira
10:08
to dig the gold out of the mountain;
194
596696
1860
para extraer o ouro da montaña;
10:11
you still can't patent it,
it's still gold.
it's still gold.
195
599127
2281
non se pode patentar, segue sendo ouro.
10:13
And the gold, once it's extracted,
196
601432
1756
E o ouro, unha vez extraído,
10:15
can clearly be used
for all sorts of things
for all sorts of things
197
603212
2088
pódese empregar en todo tipo de cousas
10:17
that it couldn't be used
for when it was in the mountain;
for when it was in the mountain;
198
605324
2736
nas que non se podía empregar
cando estaba na montaña;
cando estaba na montaña;
10:20
you can make jewelry
out of it for example --
out of it for example --
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608084
2182
con el pódense facer xoias, por exemplo.
10:22
still can't patent the gold,
it's still gold.
it's still gold.
200
610290
2165
Pero non se pode patentar o ouro,
porque segue sendo ouro.
porque segue sendo ouro.
10:25
So now it's 2009,
and we're ready to file our case.
and we're ready to file our case.
201
613364
3854
No 2009 xa estabamos listos
para presentar o caso.
para presentar o caso.
10:30
We filed in federal court
in the Southern District of New York,
in the Southern District of New York,
202
618286
3495
Presentámolo perante o Tribunal Federal
do distrito sur de Nova York,
do distrito sur de Nova York,
10:34
and the case was randomly assigned
to Judge Robert Sweet.
to Judge Robert Sweet.
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622355
3366
e o caso foille asignado, ao chou,
ao xuíz Robert Sweet.
ao xuíz Robert Sweet.
10:38
In March 2010, Judge Sweet
issued his opinion --
issued his opinion --
204
626599
3200
En marzo de 2010, o xuíz Sweet
emitiu o seu veredicto:
emitiu o seu veredicto:
10:42
152 pages --
205
630569
1858
152 páxinas.
10:44
and a complete victory for our side.
206
632834
2252
Unha vitoria total para nós.
10:47
In reading the opinion,
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635964
1431
Cando lemos a súa opinión,
10:49
we could not get over how eloquently
he described the science in the case.
he described the science in the case.
208
637419
4715
impresionounos a elocuencia
coa que describiu a ciencia no caso.
coa que describiu a ciencia no caso.
10:54
I mean, our brief --
it was pretty good,
it was pretty good,
209
642504
2771
Quero dicir, o noso informe...
era bastante bo,
era bastante bo,
10:57
but not this good.
210
645299
1567
pero non tan bo.
10:59
How did he develop such a deep
understanding of this issue
understanding of this issue
211
647778
3377
Como puido desenvolver
un coñecemento tan profundo do tema
un coñecemento tan profundo do tema
11:03
in such a short time?
212
651179
1160
en tan pouco tempo?
11:04
We just could not comprehend
how this had happened.
how this had happened.
213
652363
3608
Non podiamos imaxinar
como fora posíbel algo así.
como fora posíbel algo así.
11:07
So it turned out,
214
655995
1264
Así que resultou
11:09
Judge Sweet's clerk
working for him at the time,
working for him at the time,
215
657283
3310
que o asistente co que traballaba
o xuíz Sweet daquela,
o xuíz Sweet daquela,
11:12
was not just a lawyer --
216
660617
1480
non só era avogado...
11:14
he was a scientist.
217
662121
1714
era científico.
11:15
He was not just a scientist --
218
663859
1598
E non só era científico...
11:17
he had a PhD in molecular biology.
219
665481
3146
tiña un doutoramento
en bioloxía molecular.
en bioloxía molecular.
11:20
(Laughter)
220
668651
1751
(Risos)
11:22
What an incredible stroke of luck!
221
670426
2575
Vaia golpe de sorte!
11:26
Myriad then appealed
222
674058
1300
Entón Myriad apelou
11:27
to the US Court of Appeals
for the Federal Circuit.
for the Federal Circuit.
223
675382
2495
perante o Tribunal de Apelación
do Circuíto Federal.
do Circuíto Federal.
11:30
And here things got really interesting.
224
678496
2016
E aquí as cousas puxéronse interesantes.
11:33
First, in a pivotal moment of this case,
225
681465
3060
Primeiro, nun momento vital deste caso,
11:37
the US government switched sides.
226
685187
2631
o goberno dos Estados Unidos
mudou de lado.
mudou de lado.
11:40
So in the district court the government
submitted a brief on Myriad's side.
submitted a brief on Myriad's side.
227
688739
3749
No tribunal do distrito, o goberno
emitiu un informe a prol de Myriad.
emitiu un informe a prol de Myriad.
11:44
But now in direct opposition
to its own patent office,
to its own patent office,
228
692512
5128
Pero en oposición directa
á súa propia oficina de patentes,
á súa propia oficina de patentes,
11:49
the US government files a brief
that states that is has
that states that is has
229
697664
2708
o goberno presentou
un informe no que dicía
un informe no que dicía
11:52
reconsidered this issue
in light of the district court's opinion,
in light of the district court's opinion,
230
700396
3688
que reconsiderara este tema
á luz da decisión do tribunal do distrito,
á luz da decisión do tribunal do distrito,
11:56
and has concluded that isolated DNA
is not patent eligible.
is not patent eligible.
231
704108
3186
e concluía que o ADN illado
non era susceptíbel de ser patentado.
non era susceptíbel de ser patentado.
11:59
This was a really big deal,
232
707818
1811
Isto foi moi importante,
12:01
totally unexpected.
233
709653
1562
e totalmente inesperado.
12:04
The Court of Appeals
for the Federal Circuit
for the Federal Circuit
234
712773
2080
O Tribunal de Apelación
do Circuíto Federal
do Circuíto Federal
12:06
hears all patent cases,
235
714877
1683
leva todos os casos de patentes,
12:08
and it has a reputation for being
very, very pro-patent.
very, very pro-patent.
236
716584
3158
e é coñecida a súa reputación
moi, moi a prol das patentes.
moi, moi a prol das patentes.
12:12
So even with this remarkable development,
237
720305
2426
Así que mesmo con este
acontecemento notorio,
acontecemento notorio,
12:14
we expected to lose.
238
722755
1679
contabamos con perder.
12:16
And we did.
239
724458
1347
E así foi.
12:18
Sort of.
240
726389
1152
Máis ou menos.
12:20
Ends up split decision, 2 to 1.
241
728357
2587
A decisión foi de 2 contra 1.
12:23
But the two judges who ruled against us,
242
731743
2496
Mais os dous xuíces que
votaron contra nós,
votaron contra nós,
12:26
did so for completely different reasons.
243
734263
2241
fixérono por motivos totalmente distintos.
12:29
The first one, Judge Lourie,
244
737275
1826
O primeiro, o xuíz Lourie,
12:31
made up his own novel,
biological theory --
biological theory --
245
739125
3015
creou a súa propia
e nova teoría biolóxica,
e nova teoría biolóxica,
12:34
totally wrong.
246
742164
1168
totalmente errada.
12:35
(Laughter)
247
743356
1011
(Risos)
Decidiu que Myriad creara
unha nova substancia química,
unha nova substancia química,
12:36
He decided Myriad had created
a new chemical --
a new chemical --
248
744391
2218
12:38
made absolutely no sense.
249
746633
1865
o que non tiña sentido ningún.
12:40
Myriad didn't even argue this,
so it came out of the blue.
so it came out of the blue.
250
748522
2786
Myriad xamais argumentou iso,
polo que non tiña sentido.
polo que non tiña sentido.
12:43
The other, Judge Moore,
251
751632
1977
O outro xuíz, a xuíza Moore,
12:45
said she basically agreed with us
that isolated DNA is a product of nature.
that isolated DNA is a product of nature.
252
753633
3878
dixo que concordaba con nós en canto
a ser o ADN illado un produto da natureza.
a ser o ADN illado un produto da natureza.
12:49
But she's like, "I don't want
to shake up the biotech industry."
to shake up the biotech industry."
253
757987
3333
Pero que "Non quero zarapallar
a industria da biotecnoloxía".
a industria da biotecnoloxía".
12:54
The third, Judge Bryson,
254
762248
2572
O terceiro, o xuíz Bryson,
12:57
agreed with us.
255
765233
1216
deunos a razón.
Daquela interpuxemos recurso
perante o Tribunal Supremo.
perante o Tribunal Supremo.
12:59
So now we sought review
by the Supreme Court.
by the Supreme Court.
256
767750
2531
13:02
And when you petition the Supreme Court,
257
770305
2703
E cando interpós un recurso
perante o Tribunal Supremo
perante o Tribunal Supremo
13:05
you have to present a question
that you want the Court to answer.
that you want the Court to answer.
258
773032
3122
tes que presentar unha pregunta
que queiras que che responda o Tribunal.
que queiras que che responda o Tribunal.
13:08
Usually these questions take the form
of a super-long paragraph,
of a super-long paragraph,
259
776534
3727
Polo xeral, estas preguntas
collen a forma dun parágrafo superlongo,
collen a forma dun parágrafo superlongo,
13:12
like a whole page long
with lots and lots of clauses,
with lots and lots of clauses,
260
780285
3023
a miúdo unha páxina
con moreas de cláusulas,
con moreas de cláusulas,
13:15
"wherein this" and "therefore that."
261
783332
2457
"onde tal" e "polo tanto".
13:18
We submitted perhaps
the shortest question presented ever.
the shortest question presented ever.
262
786294
3907
Nós fixemos a que se callar foi a pregunta
máis curta que xamais recibiron.
máis curta que xamais recibiron.
13:23
Four words:
263
791312
1213
Cinco palabras:
13:26
Are human genes patentable?
264
794220
2051
Son patentábeis os xenes humanos?
13:28
Now when Chris first asked me
what I thought of these words,
what I thought of these words,
265
796922
2824
Cando Chris me preguntou
o que pensaba desas palabras,
o que pensaba desas palabras,
13:31
I said, "Well, I don't know.
266
799770
1374
díxenlle "Pois non o sei.
13:33
I think you have to say,
'Is isolated DNA patentable?'"
'Is isolated DNA patentable?'"
267
801168
3167
Penso que terías que dicir,
'é o ADN illlado patentábel?"
'é o ADN illlado patentábel?"
13:36
"Nope.
268
804968
1169
"Non.
13:38
I want the justices to have
the very same reaction that I had
the very same reaction that I had
269
806487
4621
Quero que os xuíces teñan
a mesma reacción que tiven eu
a mesma reacción que tiven eu
13:43
when you brought this issue
to me seven years ago."
to me seven years ago."
270
811132
3087
o día que me falaches
deste tema hai sete anos".
deste tema hai sete anos".
13:46
Well, I certainly couldn't
argue with that.
argue with that.
271
814896
2157
E claro, que ía dicir eu?
13:49
The Supreme Court only hears
about one percent
about one percent
272
817981
2883
O Tribunal Supremo só oe
ao redor dun un por cento
ao redor dun un por cento
13:52
of the cases that it receives,
273
820888
1666
dos casos que recibe,
13:54
and it agreed to hear ours.
274
822578
1591
e aceptou oír o noso.
13:57
The day of the oral argument arrives,
and it was really, really exciting --
and it was really, really exciting --
275
825772
4127
Chega o día das alegacións orais
e foi moi, moi emocionante...
e foi moi, moi emocionante...
14:01
long line of people outside,
276
829923
1435
con moita xente fóra,
14:03
people had been standing in line
since 2:30 in the morning
since 2:30 in the morning
277
831382
2764
xente que levaba agardando
desde as 2:30 da madrugada
desde as 2:30 da madrugada
14:06
to try to get into the courthouse.
278
834170
1734
para tentar entrar no xulgado.
14:07
Two breast cancer organizations,
279
835928
1971
Dúas organizacións
contra o cancro de peito,
contra o cancro de peito,
14:09
Breast Cancer Action and FORCE,
280
837923
1668
Breast Cancer Action e FORCE,
14:11
had organized a demonstration
on the courthouse steps.
on the courthouse steps.
281
839615
2701
organizaran unha manifestación
á entrada do xulgado.
á entrada do xulgado.
14:15
Chris and I sat quietly in the hallway,
282
843232
2870
Chris e eu agardabamos xuntos no corredor,
14:18
moments before he was to walk in and argue
283
846776
3014
momentos antes de que el
entrase a defender
entrase a defender
14:21
the most important case of his career.
284
849814
2316
o caso máis importante da súa carreira.
14:24
I was clearly more nervous than he was.
285
852765
2379
Eu estaba moito máis nerviosa ca el.
14:28
But any remaining panic subsided
as I walked into the courtroom
as I walked into the courtroom
286
856096
4760
Pero todo aquel pánico
esvaeceuse cando entrei na sala
esvaeceuse cando entrei na sala
14:32
and looked around
at a sea of friendly faces:
at a sea of friendly faces:
287
860880
2813
e vin ao meu redor
unha morea de rostros coñecidos:
unha morea de rostros coñecidos:
14:36
our individual women clients
288
864059
1765
mulleres que coñecía
14:37
who had shared their
deeply personal stories,
deeply personal stories,
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e que partillaran
as súas historias persoais,
as súas historias persoais,
14:41
the geneticists who had taken huge chunks
of time out of their busy careers
of time out of their busy careers
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os xenetistas que sacrificaran moitísimo
tempo das súas atarefadas carreiras
tempo das súas atarefadas carreiras
14:44
to dedicate themselves to this fight
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para dedicarllo a esta loita,
14:47
and representatives from a diverse array
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representantes dun diverso espectro
de organizacións médicas,
de defensa dos pacientes,
de defensa dos pacientes,
14:49
of medical, patient advocacy,
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14:51
environmental and religious organizations,
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medioambientais e relixiosas,
14:53
who had submitted friend of the court
briefs in the case.
briefs in the case.
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que presentaran observacións ao tribunal.
14:58
Also in the room were three leaders
of the Human Genome Project,
of the Human Genome Project,
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Na sala tamén estaban tres líderes
do Proxecto Xenoma Humano,
do Proxecto Xenoma Humano,
15:01
including the co-discoverer
of DNA himself,
of DNA himself,
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incluído o co-descubridor do ADN,
15:04
James Watson,
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James Watson,
15:05
who had submitted a brief to the court,
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quen lle presentara
un informe ao tribunal,
un informe ao tribunal,
15:07
where he referred
to gene patenting as "lunacy."
to gene patenting as "lunacy."
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no que dicía que
patentar xenes era unha "tolería".
patentar xenes era unha "tolería".
15:11
(Laughter)
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(Risos)
15:13
The diversity of the communities
represented in this room
represented in this room
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A diversidade das comunidades
representadas na sala
representadas na sala
15:16
and the contributions each had made
to make this day a reality
to make this day a reality
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e as contribucións que cada unha achegou
para facer realidade este día
para facer realidade este día
15:20
spoke volumes to what was at stake.
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dicía moito do que tiñamos en xogo.
15:23
The argument itself was riveting.
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A alegación era cativadora.
15:26
Chris argued brilliantly.
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914205
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Chris alegou de forma brillante.
15:27
But for me,
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Pero para min,
15:29
the most thrilling aspect was watching
the Supreme Court justices grapple
the Supreme Court justices grapple
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o máis apaixonante foi ver ós xuíces
do Tribunal Supremo tentando entender
do Tribunal Supremo tentando entender
15:32
with isolated DNA,
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920949
1569
o ADN illado,
15:34
through a series of colorful analogies
and feisty exchanges,
and feisty exchanges,
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mediante unha serie de analoxías vistosas
e diálogos enérxicos,
e diálogos enérxicos,
15:37
very much the same way
as our legal team had done
as our legal team had done
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de forma moi semellante
a como fixera o noso equipo legal
a como fixera o noso equipo legal
15:41
for the past seven years.
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durante os últimos sete anos.
15:43
Justice Kagan likened isolating DNA
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A xuíza Kagan asociou o illamento do ADN
15:46
to extracting a medicinal plant
from the Amazon.
from the Amazon.
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934346
2776
con extraer unha planta medicinal
do Amazonas.
do Amazonas.
15:50
Justice Roberts distinguished it
from carving a baseball bat from a tree.
from carving a baseball bat from a tree.
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O xuíz Roberts asociouno con facer
un bate de béisbol a partir dunha árbore.
un bate de béisbol a partir dunha árbore.
15:55
And in one of my absolutely
favorite moments,
favorite moments,
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E no que sen dúbida foi
o meu momento favorito,
o meu momento favorito,
15:58
Justice Sotomayor proclaimed isolated DNA
to be "just nature sitting there."
to be "just nature sitting there."
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a xuíza Sotomayor determinou
que o ADN illado "era natureza á espera".
que o ADN illado "era natureza á espera".
16:03
(Laughter)
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1100
(Risos)
16:05
We felt pretty confident
leaving the courtroom that day,
leaving the courtroom that day,
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Cando saímos aquel día do xulgado
sentiámonos moi confiados,
sentiámonos moi confiados,
16:08
but I could never have
anticipated the outcome:
anticipated the outcome:
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pero xamais podería anticipar o resultado:
16:12
nine to zero.
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nove a cero.
16:15
"A naturally occurring DNA segment
is a product of nature,
is a product of nature,
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"Un segmento natural de ADN
é un produto da natureza
é un produto da natureza
16:18
and not patent-eligible merely because
it has been isolated.
it has been isolated.
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3047
e non é susceptible de ser patentado
tan só porque fora illado.
tan só porque fora illado.
16:22
And furthermore,
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E o que é máis,
16:23
Myriad did not create anything."
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2545
Myriad non creou nada."
16:28
Within 24 hours of the decision,
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1996
Vinte e catro horas após a decisión,
16:30
five labs had announced
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978180
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cinco laboratorios anunciaron
16:31
that they would begin to offer testing
for the BRCA genes.
for the BRCA genes.
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979596
3014
que comezarían a ofrecer o exame
para os xenes BRCA.
para os xenes BRCA.
16:35
Some of them promised to offer the tests
at a lower price than Myriad's.
at a lower price than Myriad's.
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983149
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Algúns deles prometeron ofrecer os exames
máis baratos ca Myriad.
máis baratos ca Myriad.
16:39
Some promised to provide
a more comprehensive test
a more comprehensive test
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Algúns prometeron ofrecer
un exame máis exhaustivo
un exame máis exhaustivo
16:42
than the one Myriad was offering.
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có que ofrecía Myriad.
16:44
But of course the decision
goes far beyond Myriad.
goes far beyond Myriad.
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992490
2838
Pero a decisión do tribunal
ía alén de Myriad.
ía alén de Myriad.
16:47
It ends a 25-year practice
of allowing patents on human genes
of allowing patents on human genes
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995352
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Rematou cunha práctica de 25 anos
que permitía patentar xenes humanos
que permitía patentar xenes humanos
16:51
in the United States.
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nos Estados Unidos.
16:53
It clears a significant barrier
to biomedical discovery and innovation.
to biomedical discovery and innovation.
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4693
Eliminou atrancos que sufría a innovación
e a investigación biomédica.
e a investigación biomédica.
16:58
And it helps to ensure that patients
like Abigail, Kathleen and Eileen
like Abigail, Kathleen and Eileen
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1006484
4901
E axudou a que pacientes coma Abigail,
Kathleen e Eileen
Kathleen e Eileen
17:03
have access to the tests that they need.
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tivesen acceso aos exames que precisaban.
17:06
A few weeks after the court
issued its decision,
issued its decision,
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Poucas semanas despois de que o tribunal
emitise a súa decisión,
emitise a súa decisión,
17:10
I received a small package in the mail.
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recibín un pequeno paquete
na caixa do correo.
na caixa do correo.
17:13
It was from Bob Cook-Deegan,
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1607
Era de Bob Cook-Deegan,
17:14
a professor at Duke University
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un profesor da Universidade de Duke
17:17
and one the very first people
Chris and I went to visit
Chris and I went to visit
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3224
e unha das primeiras persoas
que eu e Chris fomos visitar
que eu e Chris fomos visitar
cando comezamos a barallar a idea
de presentar ou non o caso.
de presentar ou non o caso.
17:20
when we started to consider
whether to bring this case.
whether to bring this case.
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1028418
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Abrino e encontreime
cun pequeno boneco de peluche.
cun pequeno boneco de peluche.
17:24
I opened it up to find
a small stuffed animal.
a small stuffed animal.
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2809
17:28
(Laughter)
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(Risos)
17:33
We took a big risk in taking this case.
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Arriscámonos moito con este caso.
17:36
Part of what gave us the courage
to take that risk
to take that risk
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1044722
2510
Parte do que nos deu a coraxe
de afrontar eses riscos
de afrontar eses riscos
17:39
was knowing that we were doing
the right thing.
the right thing.
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1047256
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foi saber
que estabamos a facer o correcto.
que estabamos a facer o correcto.
17:42
The process took nearly eight years
from the start to finish,
from the start to finish,
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O proceso durou case oito anos
desde o principio ata a fin,
desde o principio ata a fin,
17:45
with many twists and turns along the way.
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con moitos xiros e imprevistos
polo camiño.
polo camiño.
17:48
A little luck certainly helped,
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Claro que a sorte axudou,
17:50
but it was the communities
that we bridged,
that we bridged,
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pero foron as comunidades que unimos,
17:53
the alliances that we created,
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2091
e as alianzas que creamos,
17:55
that made pigs fly.
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as que nos deron ás.
17:57
Thank you.
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1065802
1156
Grazas.
17:58
(Applause)
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(Aplausos)
ABOUT THE SPEAKER
Tania Simoncelli - Policy expertTania Simoncelli advises the White House on science and technology policy.
Why you should listen
Tania Simoncelli is Assistant Director for Forensic Science in the White House Office of Science and Technology Policy (OSTP). She came to OSTP from the U.S. Food and Drug Administration (FDA), where she served as Senior Advisor in the Office of Medical Products and Tobacco, providing guidance and leadership on complex initiatives that required coordination across the centers for drugs, biologics, medical devices and tobacco products. Prior to this role, she served for two years as Special Assistant to FDA Commissioner Margaret Hamburg, where she advised the Commissioner and her staff on a wide range of issues, including nutrition labeling, food safety, genetically modified foods, scientific integrity, drug safety communication, direct-to-consumer genetic testing and personalized medicine.
From 2003-2010, Simoncelli worked as the Science Advisor to the American Civil Liberties Union, where she guided the organization’s responses to cutting-edge developments in science and technology that pose challenges for civil liberties. In this capacity, she spearheaded the development of ACLU’s successful Supreme Court challenge to the patenting of human genes and advised ACLU leadership and staff on a number of other science policy issues. In 2013, Simoncelli was named by the journal Nature as one of “ten people who mattered this year” for her work with the ACLU in overturning gene patents.
Simoncelli is co-author with Sheldon Krimsky of Genetic Justice: DNA Data Banks, Criminal Investigations, and Civil Liberties (Columbia University Press: 2010). She has published articles in a range of scientific, legal and policy journals, including the Journal of the American Medical Association (JAMA), The Journal of Law, Medicine & Ethics (JLME) and Genewatch Magazine.
Simoncelli holds a BA in Biology & Society from Cornell University and an MS in Energy and Resources from the University of California, Berkeley. She has worked as a researcher, analyst, and consultant for a range of nonprofit environmental and social justice organizations, including the Environmental Defense Fund and the Center for Genetics and Society, and served for five years as a board member of the Council for Responsible Genetics.
Tania Simoncelli | Speaker | TED.com