Should you be able to patent a human gene? | Tania Simoncelli

75,300 views ・ 2016-02-17

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Translator: Adrián Levices Reviewer: Serv. de Norm. Lingüística U. de Santiago de Compostela
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.
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Traballaba de asesora científica na ACLU, 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.
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sentíame un chisco desanimada.
00:29
So I wandered down the hallway to my colleague Chris Hansen's office.
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Así que me acheguei ata o despacho do meu compañeiro Chris Hansen.
00:34
Chris had been at the ACLU for more than 30 years,
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Chris levaba máis de 30 anos traballando na ACLU,
00:38
so he had deep institutional knowledge and insights.
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polo que coñecía ben o funcionamento das institucións.
00:41
I explained to Chris that I was feeling a little bit stuck.
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Díxenlle a Chris que me sentía un chisco trabada.
00:45
I had been investigating a number of issues
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Eu estaba investigando unha serie de cuestións
00:47
at the intersection of science and civil liberties -- super interesting.
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sobre o cruzamento de ciencia e liberdades civís: moi interesante.
00:53
But I wanted the ACLU to engage these issues in a much bigger way,
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Pero quería que a ACLU abordase estes problemas máis de cara,
00:56
in a way that could really make a difference.
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dun xeito que puidese supor unha diferenza.
01:01
So Chris cut right 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?"
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"De todas esas cuestións, 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 ...
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o emprego das IMRf 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
01:30
has been issuing patents 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.
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Volvín para o meu despacho e envieille a Chris tres artigos.
01:39
And 20 minutes later, he came bursting in my office.
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E 20 minutos despois, 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?"
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
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pero non sabía case nada 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,
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Eu sabia algo sobre xenética, 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.
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Quedaba claro que había moito que aprender antes de demandar a ninguén.
02:06
First, we needed to understand exactly what was patented
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Primeiro, tiñamos que saber 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,
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As patentes xenéticas adoitan incluír ducias de reivindicacións,
02:15
but the most controversial of these are to so-called "isolated DNA" --
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pero as máis discutidas de todas son as chamadas "ADN illado"
02:20
namely, a piece of DNA that has been removed from a cell.
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ou sexa, un anaco de ADN 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,
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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.
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mais o problema radica en que é preciso illar os xenes para utilizalos.
02:42
And the patents weren't just to a particular gene that they isolated,
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E as patentes non cobren un xene illado en particular,
02:46
but on every possible version of that gene.
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senón todas as posibles 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
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Pois que non lle podes pasar 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
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Tamén implica que o titular da patente ten o dereito de impedir
03:06
from using that gene in research or clinical testing.
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que ese xene se empregue 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.
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fechen partes do xenoma humano 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,
03:22
a serious heart condition that, 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
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A empresa que patentou 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.
03:35
But then they went bankrupt and they never offered it.
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Pero entón entrou en bancarrota e nunca chegaron a ofrecela.
03:39
So another lab tried to offer the test,
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Outro laboratorio tentou ofrecer a proba,
03:41
but the company that held the patents threatened to sue the lab
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pero a empresa que posuía as patentes 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.
03:55
Gene patents clearly were a problem and were harming patients.
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As patentes xenéticas eran un problema que prexudicaba ós pacientes.
03:59
But was there a way 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,
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deixou claro nunha longa lista de casos anteriores,
04:07
that certain things are not patent eligible.
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que existen unha serie de cousas que non son patentábeis.
04:10
You can't patent products of nature --
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Non se poden patentar produtos da natureza:
04:14
the air, the water, minerals, elements of the periodic table.
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o aire, a auga, os minerais, 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
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Son cousas moi fundamentais e deben de estar ó alcance de todos,
04:29
and reserved exclusively to none.
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ninguén pode posuílas en exclusividade.
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,
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que codifica a produción de todas as nosas proteínas,
04:39
is both a product of nature and a law of nature,
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é tanto un produto 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
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 --
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viaxamos por todo o país para falar con distintos expertos:
04:54
scientists, medical professionals, lawyers, patent lawyers.
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científicos, profesionais médicos, avogados, avogados de patentes.
04:58
Most of them agreed that we were right as a matter of policy,
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A maioría dixéronnos que tiñamos razón desde un punto de vista político,
05:02
and, at least in theory, as a matter of law.
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e, cando menos en teoría, 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
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que as posibilidades 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
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Resulta que a oficina de 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.
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Literalmente, había milleiros de patentes de xenes humanos.
05:24
The patent bar was deeply entrenched in the status quo,
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O tribunal de patentes estaba moi atrincheirado no statu quo,
05:28
the biotech industry had grown up around this practice,
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a industria da biotecnoloxía medrara arredor desta práctica,
05:32
and legislation to ban gene patents had been introduced
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e a lexislación para prohibir 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.
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os tribunais non ían estar dispostos a anular estas patentes.
05:44
Now, neither Chris nor I were the type to shy away from a challenge,
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Mais, nin a Chris nin a min nos poñen medo os retos,
05:49
and hearing, "Being right 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.
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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
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Os xuízos por patentes adoitan ser: Empresa A demanda a Empresa B
06:03
over some really narrow, 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,
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A nós non nos interesaban aquel tipo de causas,
06:09
and we thought this case was much bigger than that.
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pensamos que a nosa causa abranguía moito máis.
06:11
This was about scientific freedom, medical progress,
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Tratábase da liberdade científica, 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
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Así que decidimos abrir unha causa
06:18
that was not like your typical patent case --
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que non sería coma 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.
06:24
We set out to identify a gene-patent holder
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Propuxémonos identificar 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
06:30
and then to organize a broad coalition of plaintiffs and experts
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para despois organizarmos 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.
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como estas patentes actuaban en detrimento de pacientes e innovación.
06:41
We found the prime candidate to sue in Myriad Genetics,
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Achamos que o candidato ideal para demandar era Myriad Genetics,
06:44
a company that's based in Salt Lake City, Utah.
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unha empresa con sede 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
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As mulleres con certas mutacións nestes xenes
06:57
are considered to be 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.
07:03
Myriad had used its patents to maintain
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Myriad empregara as patentes para manter
07:05
a complete monopoly on BRCA testing in the United States.
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un monopolio total sobre as probas de BCRA nos Estados Unidos.
07:10
It had forced multiple labs that were offering BRCA testing to stop.
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Fixo que varios laboratorios 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
07:21
with the international scientific community.
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coa comunidade científica internacional.
07:24
And perhaps worst of all,
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E, se callar o peor de todo,
07:26
for a period of several years,
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durante un período de varios anos,
07:28
Myriad refused to update its test to include additional mutations
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Myriad negouse a actualizar o seu exame para que incluíse mutacións adicionais
07:32
that had been identified by a team of researchers in France.
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que foran identificadas por un equipo de investigadores en Francia.
07:36
It has been estimated that during that period,
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Estimouse que durante ese período,
07:39
for several years,
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durante varios anos,
07:40
as many as 12 percent of women undergoing testing
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ata un 12% das mulleres 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.
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un resultado negativo 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
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A irmá de Kathleen, Eileen, desenvolveu cancro con 40 anos
07:59
and she was tested by Myriad.
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e fixo os exames con Myriad.
08:02
The test was negative.
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O exame deu negativo.
08:03
The family was relieved.
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A familia acougou.
08:05
That meant that Eileen's cancer most likely didn't run in the family,
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O máis probable era que ese cancro non estivese presente na familia,
08:09
and that other members of her family didn't need to be tested.
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polo que os outros membros da familia non precisaban facer o exame.
08:12
But two years later,
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Mais dous anos despois,
08:14
Kathleen was diagnosed with advanced-stage ovarian cancer.
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a Kathleen diagnosticáronlle un cancro de ovario en estado avanzado.
08:18
It turned out that Kathleen's sister was among the 12 percent
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Resultou que a irmá de Kathleen encontrábase entre ese 12%
08:22
who received a false-negative test result.
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de persoas que recibiron un resultado negativo falso.
08:26
Had Eileen received the proper result,
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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.
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e evitaría o seu cancro de ovario.
08:36
Once we settled on Myriad,
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Unha vez que nos decidimos por Myriad,
08:38
we then had to form a coalition of plaintiffs and experts
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tivemos que formar unha coalición de demandantes e expertos
08:42
that could illuminate these problems.
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que puidesen aclarar estes problemas.
08:44
We ended up with 20 highly committed plaintiffs:
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Acabamos xuntando 20 demandantes moi comprometidos:
08:47
genetic counselors,
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conselleiros xenéticos,
08:48
geneticists who had received cease and desist letters,
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xenetistas que recibiran cartas ameazantes,
08:52
advocacy organizations,
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organizacións de defensa,
08:55
four major scientific organizations that collectively represented
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catro organizacións científicas que en conxunto representaban
08:58
more than 150,000 scientists and medical professionals,
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a máis de 150.000 científicos e profesionais médicos,
09:02
and individual women who either couldn't afford Myriad's test,
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e mulleres individuais que ou ben non podían pagar o exame de Myriad,
09:06
or who wanted to obtain a second opinion but could not,
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ou ben querían una segunda opinión que non lles podían dar,
09:09
as a result of the patents.
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por mor das patentes.
09:12
One of the major challenges we had in preparing the case
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Un dos principais retos que afrontamos cando preparamos este caso
09:15
was figuring out how best to communicate the science.
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foi pensar a forma na que explicar a ciencia.
09:19
So in order to argue that what Myriad did was not an invention,
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Para argumentar que o que fixera Myriad non era un invento,
09:22
and that isolated BRCA genes were products of nature,
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e que os xenes illados BRCA eran produtos da natureza,
09:27
we had to explain a couple of basic concepts, like:
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tivemos que explicar un par de conceptos básicos, do tipo:
09:29
What's a gene? What's DNA?
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Que é un xene? Que é o ADN?
09:32
How is DNA isolated, and why isn't that an invention?
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Como se illa o ADN, e por que iso non é un invento?
09:37
We spent hours and hours with our plaintiffs and experts,
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Pasamos horas e horas cos nosos demandantes e expertos,
09:41
trying to come up with ways of explaining these concepts
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tentando dar coa forma de explicar estes conceptos
09:44
simply yet accurately.
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de forma sinxela mais certeira.
09:46
And we ended up relying heavily on the use of metaphors,
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E ao final acabamos por botar man das metáforas,
09:49
like gold.
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coma a do ouro.
09:51
So isolating DNA --
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Así que illar ADN
09:54
it's like extracting gold from a mountain
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é coma extraer ouro dunha montaña.
09:57
or taking it out of a stream bed.
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2016
ou do leito dun río.
09:59
You might be able to patent the process for mining the gold,
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Pódese patentar o proceso para extraer ouro,
10:02
but you can't patent the gold itself.
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pero non podes patentar o propio ouro.
10:05
It might've taken a lot of hard work and effort
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Tanto ten canto traballo se requira
10:08
to dig the gold out of the mountain;
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para extraer o ouro da montaña;
10:11
you still can't patent it, it's still gold.
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non se pode patentar, segue sendo ouro.
10:13
And the gold, once it's extracted,
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E o ouro, unha vez extraído,
10:15
can clearly be used for all sorts of things
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pódese empregar en todo tipo de cousas
10:17
that it couldn't be used for when it was in the mountain;
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nas que non se podía empregar cando estaba na montaña;
10:20
you can make jewelry out of it for example --
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con el pódense facer xoias, por exemplo.
10:22
still can't patent the gold, it's still gold.
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Pero non se pode patentar o ouro, porque segue sendo ouro.
10:25
So now it's 2009, and we're ready to file our case.
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No 2009 xa estabamos listos para presentar o caso.
10:30
We filed in federal court in the Southern District of New York,
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Presentámolo perante o Tribunal Federal do distrito sur de Nova York,
10:34
and the case was randomly assigned to Judge Robert Sweet.
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e o caso foille asignado, ao chou, ao xuíz Robert Sweet.
10:38
In March 2010, Judge Sweet issued his opinion --
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En marzo de 2010, o xuíz Sweet emitiu o seu veredicto:
10:42
152 pages --
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152 páxinas.
10:44
and a complete victory for our side.
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Unha vitoria total para nós.
10:47
In reading the opinion,
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Cando lemos a súa opinión,
10:49
we could not get over how eloquently he described the science in the case.
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impresionounos a elocuencia coa que describiu a ciencia no caso.
10:54
I mean, our brief -- it was pretty good,
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Quero dicir, o noso informe... era bastante bo,
10:57
but not this good.
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1567
pero non tan bo.
10:59
How did he develop such a deep understanding of this issue
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Como puido desenvolver un coñecemento tan profundo do tema
11:03
in such a short time?
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en tan pouco tempo?
11:04
We just could not comprehend how this had happened.
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Non podiamos imaxinar como fora posíbel algo así.
11:07
So it turned out,
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Así que resultou
11:09
Judge Sweet's clerk working for him at the time,
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que o asistente co que traballaba o xuíz Sweet daquela,
11:12
was not just a lawyer --
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non só era avogado...
11:14
he was a scientist.
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1714
era científico.
11:15
He was not just a scientist --
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E non só era científico...
11:17
he had a PhD in molecular biology.
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tiña un doutoramento en bioloxía molecular.
11:20
(Laughter)
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(Risos)
11:22
What an incredible stroke of luck!
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Vaia golpe de sorte!
11:26
Myriad then appealed
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Entón Myriad apelou
11:27
to the US Court of Appeals for the Federal Circuit.
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perante o Tribunal de Apelación do Circuíto Federal.
11:30
And here things got really interesting.
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2016
E aquí as cousas puxéronse interesantes.
11:33
First, in a pivotal moment of this case,
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Primeiro, nun momento vital deste caso,
11:37
the US government switched sides.
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o goberno dos Estados Unidos mudou de lado.
11:40
So in the district court the government submitted a brief on Myriad's side.
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No tribunal do distrito, o goberno emitiu un informe a prol de Myriad.
11:44
But now in direct opposition to its own patent office,
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Pero en oposición directa á súa propia oficina de patentes,
11:49
the US government files a brief that states that is has
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2708
o goberno presentou un informe no que dicía
11:52
reconsidered this issue in light of the district court's opinion,
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que reconsiderara este tema á luz da decisión do tribunal do distrito,
11:56
and has concluded that isolated DNA is not patent eligible.
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3186
e concluía que o ADN illado non era susceptíbel de ser patentado.
11:59
This was a really big deal,
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Isto foi moi importante,
12:01
totally unexpected.
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1562
e totalmente inesperado.
12:04
The Court of Appeals for the Federal Circuit
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O Tribunal de Apelación do Circuíto Federal
12:06
hears all patent cases,
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1683
leva todos os casos de patentes,
12:08
and it has a reputation for being very, very pro-patent.
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3158
e é coñecida a súa reputación moi, moi a prol das patentes.
12:12
So even with this remarkable development,
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Así que mesmo con este acontecemento notorio,
12:14
we expected to lose.
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1679
contabamos con perder.
12:16
And we did.
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1347
E así foi.
12:18
Sort of.
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1152
Máis ou menos.
12:20
Ends up split decision, 2 to 1.
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A decisión foi de 2 contra 1.
12:23
But the two judges who ruled against us,
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Mais os dous xuíces que votaron contra nós,
12:26
did so for completely different reasons.
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2241
fixérono por motivos totalmente distintos.
12:29
The first one, Judge Lourie,
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1826
O primeiro, o xuíz Lourie,
12:31
made up his own novel, biological theory --
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3015
creou a súa propia e nova teoría biolóxica,
12:34
totally wrong.
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1168
totalmente errada.
12:35
(Laughter)
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(Risos)
12:36
He decided Myriad had created a new chemical --
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2218
Decidiu que Myriad creara unha nova substancia química,
12:38
made absolutely no sense.
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1865
o que non tiña sentido ningún.
12:40
Myriad didn't even argue this, so it came out of the blue.
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2786
Myriad xamais argumentou iso, polo que non tiña sentido.
12:43
The other, Judge Moore,
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1977
O outro xuíz, a xuíza Moore,
12:45
said she basically agreed with us that isolated DNA is a product of nature.
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3878
dixo que concordaba con nós en canto 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."
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3333
Pero que "Non quero zarapallar a industria da biotecnoloxía".
12:54
The third, Judge Bryson,
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O terceiro, o xuíz Bryson,
12:57
agreed with us.
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777233
1216
deunos a razón.
12:59
So now we sought review by the Supreme Court.
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2531
Daquela interpuxemos recurso perante o Tribunal Supremo.
13:02
And when you petition the Supreme Court,
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2703
E cando interpós un recurso perante o Tribunal Supremo
13:05
you have to present a question that you want the Court to answer.
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3122
tes que presentar unha pregunta que queiras que che responda o Tribunal.
13:08
Usually these questions take the form of a super-long paragraph,
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3727
Polo xeral, estas preguntas collen a forma dun parágrafo superlongo,
13:12
like a whole page long with lots and lots of clauses,
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3023
a miúdo unha páxina con moreas de cláusulas,
13:15
"wherein this" and "therefore that."
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2457
"onde tal" e "polo tanto".
13:18
We submitted perhaps the shortest question presented ever.
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Nós fixemos a que se callar foi a pregunta máis curta que xamais recibiron.
13:23
Four words:
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1213
Cinco palabras:
13:26
Are human genes patentable?
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2051
Son patentábeis os xenes humanos?
13:28
Now when Chris first asked me what I thought of these words,
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2824
Cando Chris me preguntou o que pensaba desas palabras,
13:31
I said, "Well, I don't know.
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1374
díxenlle "Pois non o sei.
13:33
I think you have to say, 'Is isolated DNA patentable?'"
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3167
Penso que terías que dicir, 'é o ADN illlado patentábel?"
13:36
"Nope.
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816968
1169
"Non.
13:38
I want the justices to have the very same reaction that I had
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818487
4621
Quero que os xuíces teñan a mesma reacción que tiven eu
13:43
when you brought this issue to me seven years ago."
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3087
o día que me falaches deste tema hai sete anos".
13:46
Well, I certainly couldn't argue with that.
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2157
E claro, que ía dicir eu?
13:49
The Supreme Court only hears about one percent
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O Tribunal Supremo só oe ao redor dun un por cento
13:52
of the cases that it receives,
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1666
dos casos que recibe,
13:54
and it agreed to hear ours.
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1591
e aceptou oír o noso.
13:57
The day of the oral argument arrives, and it was really, really exciting --
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4127
Chega o día das alegacións orais e foi moi, moi emocionante...
14:01
long line of people outside,
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1435
con moita xente fóra,
14:03
people had been standing in line since 2:30 in the morning
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2764
xente que levaba agardando desde as 2:30 da madrugada
14:06
to try to get into the courthouse.
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1734
para tentar entrar no xulgado.
14:07
Two breast cancer organizations,
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847928
1971
Dúas organizacións contra o cancro de peito,
14:09
Breast Cancer Action and FORCE,
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1668
Breast Cancer Action e FORCE,
14:11
had organized a demonstration on the courthouse steps.
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2701
organizaran unha manifestación á entrada do xulgado.
14:15
Chris and I sat quietly in the hallway,
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2870
Chris e eu agardabamos xuntos no corredor,
14:18
moments before he was to walk in and argue
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858776
3014
momentos antes de que el entrase a defender
14:21
the most important case of his career.
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2316
o caso máis importante da súa carreira.
14:24
I was clearly more nervous than he was.
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2379
Eu estaba moito máis nerviosa ca el.
14:28
But any remaining panic subsided as I walked into the courtroom
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4760
Pero todo aquel pánico esvaeceuse cando entrei na sala
14:32
and looked around at a sea of friendly faces:
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872880
2813
e vin ao meu redor unha morea de rostros coñecidos:
14:36
our individual women clients
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1765
mulleres que coñecía
14:37
who had shared their deeply personal stories,
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2441
e que partillaran as súas historias persoais,
14:41
the geneticists who had taken huge chunks of time out of their busy careers
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3626
os xenetistas que sacrificaran moitísimo tempo das súas atarefadas carreiras
14:44
to dedicate themselves to this fight
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1825
para dedicarllo a esta loita,
14:47
and representatives from a diverse array
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2579
representantes dun diverso espectro
14:49
of medical, patient advocacy,
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1887
de organizacións médicas, de defensa dos pacientes,
14:51
environmental and religious organizations,
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2076
medioambientais e relixiosas,
14:53
who had submitted friend of the court briefs in the case.
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3532
que presentaran observacións ao tribunal.
14:58
Also in the room were three leaders of the Human Genome Project,
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3025
Na sala tamén estaban tres líderes do Proxecto Xenoma Humano,
15:01
including the co-discoverer of DNA himself,
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2672
incluído o co-descubridor do ADN,
15:04
James Watson,
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1290
James Watson,
15:05
who had submitted a brief to the court,
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2146
quen lle presentara un informe ao tribunal,
15:07
where he referred to gene patenting as "lunacy."
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no que dicía que patentar xenes era unha "tolería".
15:11
(Laughter)
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1848
(Risos)
15:13
The diversity of the communities represented in this room
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3637
A diversidade das comunidades representadas na sala
15:16
and the contributions each had made to make this day a reality
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3441
e as contribucións que cada unha achegou 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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2213
A alegación era cativadora.
15:26
Chris argued brilliantly.
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926205
1663
Chris alegou de forma brillante.
15:27
But for me,
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927892
1245
Pero para min,
15:29
the most thrilling aspect was watching the Supreme Court justices grapple
308
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3764
o máis apaixonante foi ver ós xuíces do Tribunal Supremo tentando entender
15:32
with isolated DNA,
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1569
o ADN illado,
15:34
through a series of colorful analogies and feisty exchanges,
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3226
mediante unha serie de analoxías vistosas e diálogos enérxicos,
15:37
very much the same way as our legal team had done
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937792
3340
de forma moi semellante a como fixera o noso equipo legal
15:41
for the past seven years.
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1690
durante os últimos sete anos.
15:43
Justice Kagan likened isolating DNA
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943666
2656
A xuíza Kagan asociou o illamento do ADN
15:46
to extracting a medicinal plant from the Amazon.
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946346
2776
con extraer unha planta medicinal do Amazonas.
15:50
Justice Roberts distinguished it from carving a baseball bat from a tree.
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4010
O xuíz Roberts asociouno con facer un bate de béisbol a partir dunha árbore.
15:55
And in one of my absolutely favorite moments,
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2482
E no que sen dúbida foi o meu momento favorito,
15:58
Justice Sotomayor proclaimed isolated DNA to be "just nature sitting there."
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5269
a xuíza Sotomayor determinou que o ADN illado "era natureza á espera".
16:03
(Laughter)
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963794
1100
(Risos)
16:05
We felt pretty confident leaving the courtroom that day,
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2875
Cando saímos aquel día do xulgado sentiámonos moi confiados,
16:08
but I could never have anticipated the outcome:
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968217
3006
pero xamais podería anticipar o resultado:
16:12
nine to zero.
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972574
1507
nove a cero.
16:15
"A naturally occurring DNA segment is a product of nature,
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975025
3722
"Un segmento natural de ADN é un produto da natureza
16:18
and not patent-eligible merely because it has been isolated.
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978771
3047
e non é susceptible de ser patentado tan só porque fora illado.
16:22
And furthermore,
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982394
1347
E o que é máis,
16:23
Myriad did not create anything."
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983765
2545
Myriad non creou nada."
16:28
Within 24 hours of the decision,
326
988160
1996
Vinte e catro horas após a decisión,
16:30
five labs had announced
327
990180
1392
cinco laboratorios anunciaron
16:31
that they would begin to offer testing for the BRCA genes.
328
991596
3014
que comezarían a ofrecer o exame para os xenes BRCA.
16:35
Some of them promised to offer the tests at a lower price than Myriad's.
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995149
3483
Algúns deles prometeron ofrecer os exames máis baratos ca Myriad.
16:39
Some promised to provide a more comprehensive test
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999142
2920
Algúns prometeron ofrecer un exame máis exhaustivo
16:42
than the one Myriad was offering.
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1002086
1683
có que ofrecía Myriad.
16:44
But of course the decision goes far beyond Myriad.
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1004490
2838
Pero a decisión do tribunal ía alén de Myriad.
16:47
It ends a 25-year practice of allowing patents on human genes
333
1007352
4396
Rematou cunha práctica de 25 anos que permitía patentar xenes humanos
16:51
in the United States.
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1207
nos Estados Unidos.
16:53
It clears a significant barrier to biomedical discovery and innovation.
335
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4693
Eliminou atrancos que sufría a innovación e a investigación biomédica.
16:58
And it helps to ensure that patients like Abigail, Kathleen and Eileen
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4901
E axudou a que pacientes coma Abigail, Kathleen e Eileen
17:03
have access to the tests that they need.
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2156
tivesen acceso aos exames que precisaban.
17:06
A few weeks after the court issued its decision,
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3215
Poucas semanas despois de que o tribunal emitise a súa decisión,
17:10
I received a small package in the mail.
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2260
recibín un pequeno paquete na caixa do correo.
17:13
It was from Bob Cook-Deegan,
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1033246
1607
Era de Bob Cook-Deegan,
17:14
a professor at Duke University
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2269
un profesor da Universidade de Duke
17:17
and one the very first people Chris and I went to visit
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3224
e unha das primeiras persoas que eu e Chris fomos visitar
17:20
when we started to consider whether to bring this case.
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2699
cando comezamos a barallar a idea de presentar ou non o caso.
17:24
I opened it up to find a small stuffed animal.
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2809
Abrino e encontreime cun pequeno boneco de peluche.
17:28
(Laughter)
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2959
(Risos)
17:33
We took a big risk in taking this case.
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2328
Arriscámonos moito con este caso.
17:36
Part of what gave us the courage to take that risk
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2510
Parte do que nos deu a coraxe de afrontar eses riscos
17:39
was knowing that we were doing the right thing.
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2438
foi saber que estabamos a facer o correcto.
17:42
The process took nearly eight years from the start to finish,
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3730
O proceso durou case oito anos desde o principio ata a fin,
17:45
with many twists and turns along the way.
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2221
con moitos xiros e imprevistos polo camiño.
17:48
A little luck certainly helped,
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1691
Claro que a sorte axudou,
17:50
but it was the communities that we bridged,
352
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2812
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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1156
Grazas.
17:58
(Applause)
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5514
(Aplausos)
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