Tania Simoncelli: Should you be able to patent a human gene?
타니아 시몬첼리 (Tania Simoncelli): 내가 어떻게 유전자 특허 산업에 뛰어들어 승리하였는가
Tania Simoncelli advises the White House on science and technology policy. Full bio
Double-click the English transcript below to play the video.
as the organization's science advisor.
과학 고문으로 일하고 있었고
just a little bit discouraged.
to my colleague Chris Hansen's office.
크리스 한슨의 사무실로 갔습니다.
for more than 30 years,
30년 넘게 근무해서
knowledge and insights.
통찰력을 가지고 있었습니다.
that I was feeling a little bit stuck.
제가 좀 막힌 것 같다고 설명했습니다.
a number of issues
여러 문제에 대해
and civil liberties -- super interesting.
굉장히 흥미로운 일이었죠.
these issues in a much bigger way,
더 많이 관여하기를 바랐습니다.
make a difference.
to the chase, and he says,
looking at, what are the top five?"
꼽자면 무엇인가요?"
for lie detection, and ...
거짓말 탐지에 이용하는 것
on part of the human body?
특허를 준다고 말하는 겁니까?
and sent Chris three articles.
크리스에게 기사 3개를 보냈습니다.
he came bursting in my office.
그가 제 사무실을 박차고 들어왔습니다.
누굴 고소하면 되죠?"
about patent law
완전히 무지했습니다.
but I wasn't even a lawyer,
특허법 변호사는커녕
before we could file a lawsuit.
배워야 할 것이 아주 많았지요.
exactly what was patented
정확히 무엇이 특허되는지
dozens of claims,
수십 가지 조항을 포함하지만
are to so-called "isolated DNA" --
"추출된 유전자"
that has been removed from a cell.
DNA 조각입니다.
the gene in your body,
유전자가 아니라
of the gene requires that it be isolated.
추출을 필요로 한다는 것입니다.
to a particular gene that they isolated,
특정한 유전자 뿐만아니라
version of that gene.
모든 형태를 말합니다
your gene to your doctor
has the right to stop anyone
그 유전자를 사용하는 사람을
in research or clinical testing.
가졌다는 걸 의미합니다.
was harming patients.
환자들을 해치고 있습니다.
QT 연장증후군을 앓고 있는데
if left untreated,
genes associated with this condition
유전자에 특허를 가지고 있던 회사는
and they never offered it.
제공하지 못했습니다.
threatened to sue the lab
연구소를 특허법 위반으로
할 수 없었습니다.
연장 QT로 목숨을 잃었습니다.
and were harming patients.
환자들을 해치고 있었습니다.
we could challenge them?
제기할 방법이 있었을까요?
through a long line of cases,
are not patent eligible.
명시하고 있습니다.
특허를 받을 수 없습니다.
elements of the periodic table.
성분들 같은 것 말이죠.
특허를 받을 수 없습니다.
E = MC2입니다.
and must remain free to all
자유롭게 남아 있어야 하고
of all of our proteins,
and a law of nature,
해당하는 것입니다.
to speak with many different experts --
이야기를 나누었습니다.
lawyers, patent lawyers.
특허 변호사등을 만났습니다.
as a matter of policy,
제도적으로 동의했고
as a matter of law.
그 이론에 동의했습니다.
a gene-patent challenge
소송에서 이길 확률은
had been issuing these patents
of patents on human genes.
인간 유전자 특허가 있습니다.
entrenched in the status quo,
현 상황에 굳건하게 자리 잡았고
around this practice,
바탕으로 성장해 왔습니다.
had been introduced
to overturn these patents.
하지 않을 것이라는 것입니다.
to shy away from a challenge,
도전이 무서워서 피하는 사람도 아니며
just isn't enough,"
말을 들으면서
to take on this fight.
이유가 더 생겼습니다.
Company A sues Company B
obscure technical issue.
기술적 문제로 소송을 겁니다.
in that kind of case,
was much bigger than that.
생각했습니다.
medical progress,
의학의 발전
to develop a case
your typical patent case --
a gene-patent holder
of plaintiffs and experts
were harming patients and innovation.
to sue in Myriad Genetics,
미리어드 제네틱스를 지목했습니다.
in Salt Lake City, Utah.
위치한 회사입니다.
특허를 갖고 있습니다.
along these genes
at a significantly increased risk
in the United States.
완전히 독점했습니다.
that were offering BRCA testing to stop.
BRCA 테스트를 못 하게 했습니다.
돈을 요구하기도 했습니다.
scientific community.
to include additional mutations
밝혀낸 추가적인 변이에 대해
by a team of researchers in France.
거부했다는 점입니다.
that during that period,
undergoing testing
최대 12퍼센트가
that should have been positive.
양성일 수도 있었습니다.
developed breast cancer at age 40
유방암 판정을 받았습니다.
most likely didn't run in the family,
거의 없다는 뜻이기 때문입니다.
didn't need to be tested.
테스트를 진행하지 않았습니다.
with advanced-stage ovarian cancer.
난소암 진단을 받았습니다.
was among the 12 percent
잘못된 음성 판정을 받은
받았을 것입니다.
could have been prevented.
예방할 수 있었을 것입니다.
of plaintiffs and experts
highly committed plaintiffs:
원고들와 함께 했습니다.
cease and desist letters,
that collectively represented
and medical professionals,
4개의 주류 과학 단체들
couldn't afford Myriad's test,
테스트를 받을 여유가 안되거나
a second opinion but could not,
그럴 수 없었던 여성들이
we had in preparing the case
to communicate the science.
시킬지에 관해서 였습니다.
was not an invention,
were products of nature,
자연의 산물이라고 반박하기 위해서
of basic concepts, like:
개념을 설명해야 했습니다.
DNA란 무엇인가?
and why isn't that an invention?
왜 그것이 발명이 아닌가?
with our plaintiffs and experts,
오랜 시간동안
of explaining these concepts
설명할 방법을 생각했습니다.
on the use of metaphors,
크게 의존하게 되었습니다.
the process for mining the gold,
특허를 걸 수는 있지만
of hard work and effort
it's still gold.
for all sorts of things
for when it was in the mountain;
out of it for example --
it's still gold.
and we're ready to file our case.
소송 준비를 마쳤습니다.
in the Southern District of New York,
소송장을 제출하고
to Judge Robert Sweet.
판사에게 일임되었습니다.
issued his opinion --
he described the science in the case.
설명했는지 볼 수 있었습니다.
it was pretty good,
나쁘지 않았습니다만
understanding of this issue
이렇게 깊은 견해를
how this had happened.
일어났는지 이해할 수 없었습니다.
working for him at the time,
for the Federal Circuit.
항소 했습니다.
submitted a brief on Myriad's side.
지지하는 변론을 냈습니다.
to its own patent office,
that states that is has
in light of the district court's opinion,
is not patent eligible.
결론내렸죠.
for the Federal Circuit
very, very pro-patent.
것으로 특히 유명했습니다.
반대 했습니다.
biological theory --
a new chemical --
만들었다고 했는데
so it came out of the blue.
않았고 정말 뜻밖이었습니다.
that isolated DNA is a product of nature.
자연의 산물이라는 점에는 동의하나
to shake up the biotech industry."
않아요"라는 태도를 보였습니다.
by the Supreme Court.
판결을 받기로 했습니다.
that you want the Court to answer.
질문을 제출 해야 합니다.
of a super-long paragraph,
엄청 긴 문단으로 구성되어
with lots and lots of clauses,
수 많은 절들이 들어 있습니다.
"그래서" 같이 말이죠.
the shortest question presented ever.
가장 짧은 질문을 제출했을 겁니다.
what I thought of these words,
어떻게 생각하는지 물었을 때
'Is isolated DNA patentable?'"
대상입니까?'로 해야 하지 않을까?"
the very same reaction that I had
이 문제를 내게 가져왔을 때
to me seven years ago."
argue with that.
about one percent
and it was really, really exciting --
무척 흥분되었습니다.
since 2:30 in the morning
on the courthouse steps.
조용히 앉아 있었습니다.
더 긴장하고 있었습니다.
as I walked into the courtroom
법정에 들어서서
at a sea of friendly faces:
얼굴들을 보자 사라졌습니다.
deeply personal stories,
of time out of their busy careers
헌신적으로 참여하여
briefs in the case.
이르기까지 말이죠.
of the Human Genome Project,
프로젝트의 대표자들도 자리했습니다.
of DNA himself,
to gene patenting as "lunacy."
'미친 짓'이라고 표현 했습니다.
represented in this room
to make this day a reality
말해주고 있었습니다.
the Supreme Court justices grapple
and feisty exchanges,
as our legal team had done
법률팀이 했던 것처럼
from the Amazon.
from carving a baseball bat from a tree.
야구 방망이를 깎는 것으로 표현했습니다.
favorite moments,
to be "just nature sitting there."
앉아 있다"고 선언한 것이었습니다.
leaving the courtroom that day,
anticipated the outcome:
is a product of nature,
DNA 부분은 자연의 산물이고
it has been isolated.
특허를 낼 수는 없다.
for the BRCA genes.
시작한다고 선언했습니다.
at a lower price than Myriad's.
테스트를 진행하겠다 약속했고
a more comprehensive test
더 포괄적인 테스트를
goes far beyond Myriad.
of allowing patents on human genes
인간 유전자 특허를
to biomedical discovery and innovation.
장벽을 허물은 것입니다.
like Abigail, Kathleen and Eileen
아일린과 같은 환자들이 필요한
보장하는 것입니다.
issued its decision,
Chris and I went to visit
이 소송을 준비하면서
whether to bring this case.
a small stuffed animal.
작은 동물 인형이 들어 있었습니다.
위험 부담을 가졌습니다.
to take that risk
있도록 용기를 준 것은
the right thing.
알았기 때문입니다.
from the start to finish,
8년이 걸린 이 과정에서
that we bridged,
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