ABOUT THE SPEAKER
Tania Simoncelli - Policy expert
Tania 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.

More profile about the speaker
Tania Simoncelli | Speaker | TED.com
TEDxAmoskeagMillyard

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

塔尼娅·西蒙切利: 我是怎么在基因专利大战中获胜的

Filmed:
1,131,297 views

人类基因可以被授予专利吗?2005 年,当塔尼娅·西蒙切利首次注意到这个复杂的问题,美国专利法认可此行为——因而意味着专利持有者有权阻止任何他人测序、检测甚至诊断病人的基因。因为法律这样做不但损害了病人的利益,而且为生物医疗创新制造了阻碍,西蒙切利和她在 ACLU (美国公民自由同盟)的同事对这一现象发起了挑战。在本次掷地有声的演讲中,听一听他们如何把一个所有人都认为他们必败无疑的案子一直打到(美国)最高法院。
- Policy expert
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下午 in the fall秋季 of 2005.
0
1424
3158
那是 2005 年秋日的一个下午。
00:17
I was working加工 at the ACLUACLU
as the organization's组织的 science科学 advisor顾问.
1
5325
3599
我时任 ACLU
(美国公民自由联盟)的科学顾问。
00:21
I really, really loved喜爱 my job工作,
2
9388
2607
我真的非常喜欢我的工作,
但是那段时间我时常
00:24
but I was having one of those days
3
12019
1636
感到有一点点受挫。
00:25
where I was feeling感觉
just a little bit discouraged灰心.
4
13679
2569
00:29
So I wandered逛到 down the hallway门厅
to my colleague同事 Chris克里斯 Hansen's汉森 office办公室.
5
17265
4104
于是我经过走廊晃荡到
同事克里斯·汉森的办公室。
00:34
Chris克里斯 had been at the ACLUACLU
for more than 30 years年份,
6
22367
3654
克里斯在 ACLU 供职三十多年了,
他对机构有深刻的了解和想法。
00:38
so he had deep institutional制度
knowledge知识 and insights见解.
7
26045
3075
00:41
I explained解释 to Chris克里斯
that I was feeling感觉 a little bit stuck卡住.
8
29640
2973
我向克里斯解释
我为什么觉得有些举步维艰。
00:45
I had been investigating调查
a number of issues问题
9
33512
2182
我当时在调查一系列
处在科学和公民自由十字路口的问题
——非常有意思。
00:47
at the intersection路口 of science科学
and civil国内 liberties自由 -- super interesting有趣.
10
35718
5301
但是我希望 ACLU 能够在
更高的层面参与这些问题。
00:53
But I wanted the ACLUACLU to engage从事
these issues问题 in a much bigger way,
11
41043
3910
以一种能真正做出改变的方式。
00:56
in a way that could really
make a difference区别.
12
44977
2245
01:01
So Chris克里斯 cut right
to the chase, and he says,
13
49603
2100
克里斯开门见山地说,
“那好,所有你正在考虑的问题里面,
排前五位的是什么?”
01:03
"Well, of all the issues问题 you've been
looking at, what are the top最佳 five?"
14
51727
3460
01:07
"Well, there's genetic遗传 discrimination区别,
15
55524
2656
“我想应该是遗传歧视,
生育技术,
01:10
and reproductive生殖 technologies技术,
16
58204
2425
生物样本库,还有……
01:12
and biobanking生物样本库, and ...
17
60653
2141
哦,这个真的很酷,
01:14
oh, there's this really cool issue问题,
18
62818
1842
功能性 MRI(核磁共振成像),
用它来测谎,还有……
01:16
functional实用 MRIMRI and using运用 it
for lie谎言 detection发现, and ...
19
64684
2649
哦,当然,还有基因专利。”
01:19
oh, and of course课程, there's gene基因 patents专利."
20
67357
2121
“基因专利?”
01:21
"Gene基因 patents专利?"
21
69502
1629
01:23
"Yes, you know, patents专利 on human人的 genes基因."
22
71967
2082
“是的,你知道的,
授予人类基因专利。”
“不可能!
01:26
"No!
23
74073
1506
你是说,美国政府
01:27
You're telling告诉 me that the US government政府
24
75603
2461
正在对人身体的部分授予专利?
01:30
has been issuing发行 patents专利
on part部分 of the human人的 body身体?
25
78088
2924
01:33
That can't be right."
26
81543
1683
这怎么可能嘛。”
01:35
I went back to my office办公室
and sent发送 Chris克里斯 three articles用品.
27
83861
3459
我回到我的办公室,
给克里斯发了三篇文章。
01:39
And 20 minutes分钟 later后来,
he came来了 bursting爆破 in my office办公室.
28
87954
3327
20分钟以后,
他冲进我的办公室。
“天哪!你说中了!
我们可以起诉谁?”
01:43
"Oh my god! You're right! Who can we sue起诉?"
29
91305
3616
01:47
(Laughter笑声)
30
95330
1509
(笑声)
01:49
Now Chris克里斯 is a really brilliant辉煌 lawyer律师,
31
97713
2374
克里斯是一名杰出的律师,
01:52
but he knew知道 almost几乎 nothing
about patent专利 law
32
100111
2909
但是他几乎完全不懂专利法,
而且肯定不懂遗传学。
01:55
and certainly当然 nothing about genetics遗传学.
33
103044
2436
我懂一点遗传学,
但我连律师都不是,
01:57
I knew知道 something about genetics遗传学,
but I wasn't even a lawyer律师,
34
105504
2878
更别说专利律师了。
02:00
let alone单独 a patent专利 lawyer律师.
35
108406
1661
所以很显然,在打官司之前,
我们需要学很多东西。
02:02
So clearly明确地 we had a lot to learn学习
before we could file文件 a lawsuit诉讼.
36
110091
3466
02:06
First, we needed需要 to understand理解
exactly究竟 what was patented专利
37
114036
2858
首先,我们需要搞清楚
当有人为基因申请专利时,
究竟是什么被授予了专利。
02:08
when someone有人 patented专利 a gene基因.
38
116918
1681
02:11
Gene基因 patents专利 typically一般 contain包含
dozens许多 of claims索赔,
39
119679
3822
基因专利通常包含几十条要求,
但是最矛盾的是所谓的“离体 DNA”——
02:15
but the most controversial争论的 of these
are to so-called所谓 "isolated孤立 DNA脱氧核糖核酸" --
40
123525
4777
02:20
namely亦即, a piece of DNA脱氧核糖核酸
that has been removed去除 from a cell细胞.
41
128699
4441
也就是从细胞中移出的 DNA 片段。
02:26
Gene基因 patent专利 proponents支持者 say,
42
134073
1299
基因专利的支持者称,
“看见了吗?我们没有对你
身体中的基因申请专利,
02:27
"See? We didn't patent专利
the gene基因 in your body身体,
43
135396
3174
我们是为离体的基因申请专利。”
02:30
we patented专利 an isolated孤立 gene基因."
44
138594
1935
02:33
And that's true真正,
45
141148
1201
这话是没错,
但问题在于,无论如何,
要使用基因,就必须先进行分离。
02:34
but the problem问题 is that any use
of the gene基因 requires要求 that it be isolated孤立.
46
142373
6733
02:42
And the patents专利 weren't just
to a particular特定 gene基因 that they isolated孤立,
47
150510
4405
而被授予专利的,
并非他们分离的某个特定的基因,
而是那个基因每一种可能的版本。
02:46
but on every一切 possible可能
version of that gene基因.
48
154939
2887
02:50
So what does that mean?
49
158183
1337
那么这意味着什么呢?
02:51
That means手段 that you can't give
your gene基因 to your doctor医生
50
159981
3062
这意味着你不能把你的基因给医生,
然后请他/她检查,
02:55
and ask him or her to look at it,
51
163067
2296
比如说,检查是否有变异,
02:57
say, to see if it has any mutations突变,
52
165387
2100
如果你没有专利持有者的授权。
02:59
without permission允许 of the patent专利 holder持有人.
53
167511
2076
03:02
It also means手段 that the patent专利 holder持有人
has the right to stop anyone任何人
54
170363
4193
这也意味着专利持有者
有权阻止任何人
使用该基因从事研究或临床试验。
03:06
from using运用 that gene基因
in research研究 or clinical临床 testing测试.
55
174580
3482
03:10
Allowing允许 patent专利 holders持有人,
56
178871
1698
允许专利持有者,
通常是私有企业,
03:12
often经常 private私人的 companies公司,
57
180593
1284
关起开发人类基因组的大门,
会损害患者的利益。
03:13
to lock up stretches舒展 of the human人的 genome基因组
was harming汉宁波 patients耐心.
58
181901
4486
03:18
Consider考虑 Abigail阿比盖尔,
59
186958
1152
比如,阿比盖尔,
一个10岁的孩子,
患有长 QT 综合症,
03:20
a 10-year-old-岁 with long QTQT syndrome综合征,
60
188134
2393
这是一种严重的心脏疾病,
如果不治疗,
03:22
a serious严重 heart condition条件 that,
if left untreated未处理,
61
190551
3424
可能引发猝死。
03:25
can result结果 in sudden突然 death死亡.
62
193999
1778
03:28
The company公司 that obtained获得 a patent专利 on two
genes基因 associated相关 with this condition条件
63
196911
3922
有个公司拥有与这种疾病有关的
两个基因的专利,
他们开发了一种针对此病症的
检验方法。
03:32
developed发达 a test测试 to diagnose诊断 the syndrome综合征.
64
200857
2482
但随后公司倒闭了,
还没来得及推出这项检测服务。
03:35
But then they went bankrupt破产者
and they never offered提供 it.
65
203363
2824
03:39
So another另一个 lab实验室 tried试着 to offer提供 the test测试,
66
207060
1928
于是另一个实验室尝试
提供这种检测,
但是这家持有专利的公司
起诉那个了实验室
03:41
but the company公司 that held保持 the patents专利
threatened受威胁 to sue起诉 the lab实验室
67
209012
2988
专利侵权。
03:44
for patent专利 infringement侵害.
68
212024
1182
所以,结果是,
03:45
So as a result结果,
69
213230
1159
两年内,没有人提供这种检测服务。
03:46
for 2 years年份, no test测试 was available可得到.
70
214413
2862
03:50
During that time,
71
218291
1150
在此期间,
阿比盖尔因未诊断出长 QT 症去世。
03:51
Abigail阿比盖尔 died死亡 of undiagnosed确诊 long QTQT.
72
219465
3250
03:55
Gene基因 patents专利 clearly明确地 were a problem问题
and were harming汉宁波 patients耐心.
73
223776
3237
基因专利明显是个问题,
并且在损害患者的利益。
03:59
But was there a way
we could challenge挑战 them?
74
227467
2406
但是我们有没有办法挑战他们呢?
04:02
Turns out that the Supreme最高 Court法庭
75
230266
1732
其实,(美国)最高法院
通过一系列的判例
已经清楚地表明,
04:04
has made制作 clear明确
through通过 a long line线 of cases,
76
232022
3114
有些东西是不能申请专利的。
04:07
that certain某些 things
are not patent专利 eligible合格.
77
235160
2786
04:10
You can't patent专利 products制品 of nature性质 --
78
238925
2374
你不能为自然界的产物申请专利——
04:14
the air空气, the water, minerals矿物质,
elements分子 of the periodic定期 table.
79
242148
4209
空气、水、矿产、周期表里的元素。
04:19
And you can't patent专利 laws法律 of nature性质 --
80
247170
2112
你也不能为自然规律申请专利——
04:22
the law of gravity重力, E = mcMC2.
81
250193
2279
引力定律,E=mc2 (质能方程),
04:24
These things are just too fundamental基本的
and must必须 remain free自由 to all
82
252909
4806
这些东西太基础了,
必须对所有人免费开放,
不该被任何人独自占有。
04:29
and reserved保留的 exclusively to none没有.
83
257739
1823
04:32
It seemed似乎 to us that DNA脱氧核糖核酸,
84
260348
2147
对我们来说,似乎 DNA,
生命最本质的结构,
04:34
the most fundamental基本的 structure结构体 of life,
85
262519
2516
掌控所有蛋白质生产的编码,
04:37
that codes代码 for the production生产
of all of our proteins蛋白质,
86
265059
2656
既是自然界的产物,
也是自然规律,
04:39
is both a product产品 of nature性质
and a law of nature性质,
87
267739
3226
无论它是在我们的体内,
04:42
regardless而不管 of whether是否 it's in our bodies身体
88
270989
2702
还是沉在一根试管底部。
04:45
or sitting坐在 in the bottom底部 of a test测试 tube.
89
273715
2038
04:48
As we delved钻研 into this issue问题,
90
276523
1455
我们不断深入这个问题,
在国内四处奔波,
和许多专家交流——
04:50
we traveled旅行 all over the country国家
to speak说话 with many许多 different不同 experts专家 --
91
278002
3908
04:54
scientists科学家们, medical professionals专业人士,
lawyers律师, patent专利 lawyers律师.
92
282588
3713
科学家、医疗专家、
律师、专利律师。
04:58
Most of them agreed同意 that we were right
as a matter of policy政策,
93
286753
3910
绝大多数都同意,
在政策层面我们是正确的,
并且在法律层面,
至少在理论上是正确的。
05:02
and, at least最小 in theory理论,
as a matter of law.
94
290687
2785
05:06
All of them thought
95
294313
1155
但他们全都认为
我们挑战基因专利授权的成功概率
05:07
our chances机会 of winning胜利
a gene-patent基因专利 challenge挑战
96
295492
2570
几乎为零。
05:10
were about zero.
97
298086
1867
05:13
Why is that?
98
301628
1363
为什么呢?
因为专利局签发这些专利
05:15
Well, the patent专利 office办公室
had been issuing发行 these patents专利
99
303015
3087
已经超过 20 年了。
05:18
for more than 20 years年份.
100
306126
1701
05:20
There were literally按照字面 thousands数千
of patents专利 on human人的 genes基因.
101
308686
2880
毫不夸张地说,现在已经
有上千个人类基因专利。
05:24
The patent专利 bar酒吧 was deeply
entrenched根深蒂固 in the status状态 quo现状,
102
312843
2941
专利律师已经深陷其中,
05:28
the biotech生物技术 industry行业 had grown长大的 up
around this practice实践,
103
316581
3623
生物技术产业已经
通过这个司法实践壮大,
禁止基因专利的立法提案
05:32
and legislation立法 to ban禁止 gene基因 patents专利
had been introduced介绍
104
320228
3119
年年在国会被提出,
05:35
year after year in Congress国会,
105
323371
1398
但很显然根本没出国会的门。
05:36
and had gone走了 absolutely绝对 nowhere无处.
106
324793
1791
05:39
So the bottom底部 line线:
107
327401
1214
所以归根结底:
05:41
courts法院 just weren't going to be willing愿意
to overturn颠覆 these patents专利.
108
329027
3175
法院就是不愿意去推翻这些专利。
05:44
Now, neither也不 Chris克里斯 nor也不 I were the type类型
to shy害羞 away from a challenge挑战,
109
332916
4595
只不过,我和克里斯都不是
那种遇到挑战就退缩的人,
听到“站在正义一边还不够,”
05:49
and hearing听力, "Being存在 right
just isn't enough足够,"
110
337535
3144
这就更值得我们去为此战斗。
05:52
seemed似乎 all the more reason原因
to take on this fight斗争.
111
340703
2530
05:56
So we set out to build建立 our case案件.
112
344311
1935
所以我们着手准备自己的案件。
05:59
Now, patent专利 cases tend趋向 to be:
Company公司 A sues起诉 Company公司 B
113
347494
3490
现在,专利案通常是:
公司 A 起诉公司 B,
只针对一些非常局限、
隐晦的技术问题。
06:03
over some really narrow狭窄,
obscure朦胧 technical技术 issue问题.
114
351008
3183
06:06
We weren't really interested有兴趣
in that kind of case案件,
115
354822
2365
我们对那种案件并不十分感兴趣,
我们认为这个案件
要比那些重大得多。
06:09
and we thought this case案件
was much bigger than that.
116
357211
2389
这个案件关乎科学自由,医疗进步,
06:11
This was about scientific科学 freedom自由,
medical progress进展,
117
359624
2488
患者权利。
06:14
the rights权利 of patients耐心.
118
362136
1459
所以我们决定要做和你们通常看到的
06:15
So we decided决定 we were going
to develop发展 a case案件
119
363619
3103
专利案不同的事情——
06:18
that was not like
your typical典型 patent专利 case案件 --
120
366746
2518
06:21
more like a civil国内 rights权利 case案件.
121
369645
1882
它更像是针对公民权利的申诉。
06:24
We set out to identify鉴定
a gene-patent基因专利 holder持有人
122
372756
2842
我们着手寻找
这样一个基因专利持有者:
他要非常强硬地推行专利;
06:27
that was vigorously大力 enforcing强制执行 its patents专利
123
375622
2785
然后组织一个广泛的原告和专家联盟
06:30
and then to organize组织 a broad广阔 coalition联盟
of plaintiffs原告 and experts专家
124
378431
3294
来告诉法庭
06:33
that could tell the court法庭
125
381749
1890
这些专利侵害病人、
阻碍创新的种种劣迹。
06:35
about all the ways方法 that these patents专利
were harming汉宁波 patients耐心 and innovation革新.
126
383663
4389
06:41
We found发现 the prime主要 candidate候选人
to sue起诉 in Myriad无数的 Genetics遗传学,
127
389404
3122
我们发现 Myriad Genetics
可以作为起诉的主要目标。
这是一家总部设在
犹他州盐湖城的公司。
06:44
a company公司 that's based基于
in Salt Lake City, Utah犹他州.
128
392550
2855
06:48
Myriad无数的 held保持 patents专利 on two genes基因,
129
396718
2250
Myriad 持有两个基因的专利,
BRCA1 和 BRCA2 基因。
06:50
the BRCABRCA1 and the BRCABRCA2 genes基因.
130
398992
3321
06:55
Women妇女 with certain某些 mutations突变
along沿 these genes基因
131
403150
2734
携带有这两个基因某些变异的女性
罹患乳腺癌和卵巢癌的风险
会显著升高。
06:57
are considered考虑 to be
at a significantly显著 increased增加 risk风险
132
405908
2626
07:00
of developing发展 breast乳房 and ovarian卵巢 cancer癌症.
133
408558
1945
07:03
Myriad无数的 had used its patents专利 to maintain保持
134
411834
1880
Myriad 公司使用他们的专利来维持
美国境内化验 BRCA 的全面垄断地位。
07:05
a complete完成 monopoly垄断 on BRCABRCA testing测试
in the United联合的 States状态.
135
413738
4209
07:10
It had forced被迫 multiple labs实验室
that were offering BRCABRCA testing测试 to stop.
136
418544
4188
他们强行叫停了数个
提供 BRCA化验的实验室。
他们对化验收取高额费用——
07:14
It charged带电 a lot of money for its test测试 --
137
422756
2159
超过三千美元。
07:16
over 3,000 dollars美元.
138
424939
1683
07:19
It had stopped停止 sharing分享 its clinical临床 data数据
139
427089
2335
他们停止向国际科学界共享临床数据。
07:21
with the international国际
scientific科学 community社区.
140
429448
2287
07:24
And perhaps也许 worst最差 of all,
141
432522
1903
还有可能最糟糕的,
曾经有几年,
07:26
for a period of several一些 years年份,
142
434449
2436
Myriad 拒绝在他们的化验中增加
07:28
Myriad无数的 refused拒绝 to update更新 its test测试
to include包括 additional额外 mutations突变
143
436909
3713
由法国的一个研究团队
鉴别出来的新变异类型。
07:32
that had been identified确定
by a team球队 of researchers研究人员 in France法国.
144
440646
3621
07:36
It has been estimated预计
that during that period,
145
444974
2508
据估计,在此期间,
数年间,
07:39
for several一些 years年份,
146
447506
1373
有近 12% 接受化验的女性
07:40
as many许多 as 12 percent百分 of women妇女
undergoing经历 testing测试
147
448903
3752
得到了错误的结果——
07:44
received收到 the wrong错误 answer回答 --
148
452679
2402
07:48
a negative test测试 result结果
that should have been positive.
149
456377
3769
也就是本应该是阳性的
阴性结果(假阴性)。
07:53
This is Kathleen凯瑟琳 Maxian麻线.
150
461485
1741
这是卡瑟琳·马克西安。
07:56
Kathleen's凯瑟琳的 sister妹妹 Eileen艾琳
developed发达 breast乳房 cancer癌症 at age年龄 40
151
464172
3257
卡瑟琳的姐姐艾琳 40 岁得了乳腺癌。
她曾做过 Myriad 的化验,
07:59
and she was tested测试 by Myriad无数的.
152
467453
1840
08:02
The test测试 was negative.
153
470032
1726
结果是阴性。
这家人松了口气。
08:03
The family家庭 was relieved安心.
154
471782
1526
这说明艾琳的癌症
很可能不会在家族中重现。
08:05
That meant意味着 that Eileen's艾琳的 cancer癌症
most likely容易 didn't run in the family家庭,
155
473332
3788
她的家人也不需要再接受化验。
08:09
and that other members会员 of her family家庭
didn't need to be tested测试.
156
477144
3015
08:12
But two years年份 later后来,
157
480843
1230
但是两年后,
卡瑟琳被诊断出晚期卵巢癌。
08:14
Kathleen凯瑟琳 was diagnosed确诊
with advanced-stage晚期 ovarian卵巢 cancer癌症.
158
482097
4060
08:18
It turned转身 out that Kathleen's凯瑟琳的 sister妹妹
was among其中 the 12 percent百分
159
486927
3872
原来卡瑟琳的姐姐就是那 12%
得到了假阴性结果的病人之一。
08:22
who received收到 a false-negative假阴性 test测试 result结果.
160
490823
2869
08:26
Had Eileen艾琳 received收到 the proper正确 result结果,
161
494347
3089
如果艾琳得到了正确的化验结果,
卡瑟琳就也会去做化验,
08:29
Kathleen凯瑟琳 would have then been tested测试,
162
497460
2373
她的卵巢癌就可能得到预防。
08:31
and her ovarian卵巢 cancer癌症
could have been prevented防止.
163
499857
2913
08:36
Once一旦 we settled安定 on Myriad无数的,
164
504818
1264
我们确定目标为 Myriad 后,
就需要组建一个
08:38
we then had to form形成 a coalition联盟
of plaintiffs原告 and experts专家
165
506106
3885
能够陈述这些问题的原告和专家团。
08:42
that could illuminate照亮 these problems问题.
166
510015
2088
我们找到了 20 位非常积极的原告:
08:44
We ended结束 up with 20
highly高度 committed提交 plaintiffs原告:
167
512127
2572
08:47
genetic遗传 counselors心理咨询师,
168
515325
1538
遗传学咨询顾问,
收到叫停信件的遗传学家:
08:48
geneticists遗传学家 who had received收到
cease停止 and desist断念 letters,
169
516887
3359
08:52
advocacy拥护 organizations组织,
170
520905
1849
支持我们的组织,
08:55
four major重大的 scientific科学 organizations组织
that collectively represented代表
171
523532
3065
四个主要科学组织,集中代表了
超过 15 万名科学工作者和医疗专家,
08:58
more than 150,000 scientists科学家们
and medical professionals专业人士,
172
526621
3530
09:02
and individual个人 women妇女 who either
couldn't不能 afford给予 Myriad'sMyriad的 test测试,
173
530755
3297
以及无力支付 Myriad 的检测
或者希望有其他选择,
但因为专利原因
09:06
or who wanted to obtain获得
a second第二 opinion意见 but could not,
174
534076
3004
无法实现的女性个体。
09:09
as a result结果 of the patents专利.
175
537104
1744
09:12
One of the major重大的 challenges挑战
we had in preparing准备 the case案件
176
540315
3440
我们在准备案件期间
遇到的主要挑战是,
搞清楚如何最有效地阐述科学观点。
09:15
was figuring盘算 out how best最好
to communicate通信 the science科学.
177
543779
2866
09:19
So in order订购 to argue争论 that what Myriad无数的 did
was not an invention发明,
178
547079
3831
所以,为了辩明
Myriad 的成果并不属于创新,
以及离体的 BRCA 基因
是自然界的产物,
09:22
and that isolated孤立 BRCABRCA genes基因
were products制品 of nature性质,
179
550934
3277
09:27
we had to explain说明 a couple一对
of basic基本 concepts概念, like:
180
555124
2713
我们必须解释一些基本概念,比如:
基因是什么?DNA 是什么?
09:29
What's a gene基因? What's DNA脱氧核糖核酸?
181
557861
2144
如何分离 DNA,
以及为什么这不是创新?
09:32
How is DNA脱氧核糖核酸 isolated孤立,
and why isn't that an invention发明?
182
560029
3716
09:37
We spent花费 hours小时 and hours小时
with our plaintiffs原告 and experts专家,
183
565168
3862
我们和原告以及专家团
花费了无数日夜,
努力寻找能够简洁又不失准确地
解释这些概念的方式。
09:41
trying to come up with ways方法
of explaining说明 these concepts概念
184
569054
2936
09:44
simply只是 yet然而 accurately准确.
185
572014
1543
09:46
And we ended结束 up relying依托 heavily严重
on the use of metaphors隐喻,
186
574306
3332
我们最终非常依赖比喻,
比如说黄金。
09:49
like gold.
187
577662
1156
09:51
So isolating隔离 DNA脱氧核糖核酸 --
188
579789
2284
因此,分离 DNA ——
就像从大山中挖出黄金,
09:54
it's like extracting提取 gold from a mountain
189
582097
2500
09:57
or taking服用 it out of a stream bed.
190
585105
2016
或者从溪流河床里淘出黄金。
你或许可以为
采集黄金的流程申请专利,
09:59
You might威力 be able能够 to patent专利
the process处理 for mining矿业 the gold,
191
587145
3674
但你不能为黄金本身申请专利。
10:02
but you can't patent专利 the gold itself本身.
192
590843
2081
10:05
It might've可能已经 taken采取 a lot
of hard work and effort功夫
193
593929
2743
你可能要靠无数艰辛努力
才能从山中挖到黄金;
10:08
to dig the gold out of the mountain;
194
596696
1860
10:11
you still can't patent专利 it,
it's still gold.
195
599127
2281
但你仍旧不能为它申请专利,
黄金还是黄金。
而黄金,一旦被挖掘出来,
10:13
And the gold, once一旦 it's extracted提取,
196
601432
1756
显然可以被用于各种
10:15
can clearly明确地 be used
for all sorts排序 of things
197
603212
2088
它藏在山中时不能实现的用途;
10:17
that it couldn't不能 be used
for when it was in the mountain;
198
605324
2736
比如,你可以把它做成珠宝——
10:20
you can make jewelry首饰
out of it for example --
199
608084
2182
但仍然不能为金子申请专利,
金子还是金子。
10:22
still can't patent专利 the gold,
it's still gold.
200
610290
2165
10:25
So now it's 2009,
and we're ready准备 to file文件 our case案件.
201
613364
3854
然后就到了 2009 年,
我们准备起诉了。
10:30
We filed提交 in federal联邦 court法庭
in the Southern南部的 District of New York纽约,
202
618286
3495
我们向纽约南区的联邦法庭递交了诉讼,
10:34
and the case案件 was randomly随机 assigned分配
to Judge法官 Robert罗伯特 Sweet.
203
622355
3366
然后案子被随机分配给了
法官罗伯特·斯威特。
10:38
In March游行 2010, Judge法官 Sweet
issued发行 his opinion意见 --
204
626599
3200
2010 年 3 月,斯威特法官
宣布了他的判决意见。
10:42
152 pages网页 --
205
630569
1858
152 页。
10:44
and a complete完成 victory胜利 for our side.
206
632834
2252
我方完胜。
10:47
In reading the opinion意见,
207
635964
1431
在判决意见里,
我们对他在案子中
如此雄辩地陈述科学事实激动不已。
10:49
we could not get over how eloquently雄辩地
he described描述 the science科学 in the case案件.
208
637419
4715
10:54
I mean, our brief简要 --
it was pretty漂亮 good,
209
642504
2771
我是说,我们的简述——
挺不错的,
但没有这么出彩。
10:57
but not this good.
210
645299
1567
10:59
How did he develop发展 such这样 a deep
understanding理解 of this issue问题
211
647778
3377
他是如何在这么短的时间内
做出如此深刻的理解?
11:03
in such这样 a short time?
212
651179
1160
我们真的无法想象
一切是怎么发生的。
11:04
We just could not comprehend理解
how this had happened发生.
213
652363
3608
后来我们才发现,
11:07
So it turned转身 out,
214
655995
1264
当时斯威特法官手下的助手
11:09
Judge法官 Sweet's甜的 clerk书记
working加工 for him at the time,
215
657283
3310
不仅仅是一个律师——
11:12
was not just a lawyer律师 --
216
660617
1480
他还是个科学家。
11:14
he was a scientist科学家.
217
662121
1714
他又不仅仅是个科学家——
11:15
He was not just a scientist科学家 --
218
663859
1598
他是分子生物学博士。
11:17
he had a PhD博士 in molecular分子 biology生物学.
219
665481
3146
(笑声)
11:20
(Laughter笑声)
220
668651
1751
我们真是太走运了!
11:22
What an incredible难以置信 stroke行程 of luck运气!
221
670426
2575
11:26
Myriad无数的 then appealed上诉
222
674058
1300
Myriad 随后
向美国联邦巡回上诉法庭上诉。
11:27
to the US Court法庭 of Appeals上诉
for the Federal联邦 Circuit电路.
223
675382
2495
11:30
And here things got really interesting有趣.
224
678496
2016
然后事情就变得非常有意思了。
11:33
First, in a pivotal关键的 moment时刻 of this case案件,
225
681465
3060
首先,本案中的一个关键时刻,
11:37
the US government政府 switched交换的 sides双方.
226
685187
2631
美国政府倒戈了。
11:40
So in the district court法庭 the government政府
submitted提交 a brief简要 on Myriad'sMyriad的 side.
227
688739
3749
在地区法庭上,
政府递交了一份简述支持 Myriad。
但是这回美国政府
直接反对了它自己的专利局,
11:44
But now in direct直接 opposition反对
to its own拥有 patent专利 office办公室,
228
692512
5128
政府递交了一份摘要声明,
11:49
the US government政府 files a brief简要
that states状态 that is has
229
697664
2708
他们基于地区法庭的判决,
重新考虑了问题,
11:52
reconsidered重新考虑 this issue问题
in light of the district court's法院 opinion意见,
230
700396
3688
并认定离体 DNA
不具备申请专利的条件。
11:56
and has concluded总结 that isolated孤立 DNA脱氧核糖核酸
is not patent专利 eligible合格.
231
704108
3186
11:59
This was a really big deal合同,
232
707818
1811
这件事意义非凡,
完全出人意料。
12:01
totally完全 unexpected意外.
233
709653
1562
12:04
The Court法庭 of Appeals上诉
for the Federal联邦 Circuit电路
234
712773
2080
联邦巡回上诉法庭
受理过所有的专利案例,
12:06
hears就听 all patent专利 cases,
235
714877
1683
对专利持坚决支持态度
也是众所周知。
12:08
and it has a reputation声誉 for being存在
very, very pro-patent亲专利.
236
716584
3158
12:12
So even with this remarkable卓越 development发展,
237
720305
2426
所以即使取得了如此长足的进步,
我们仍然觉得会败诉。
12:14
we expected预期 to lose失去.
238
722755
1679
我们是败诉了。
12:16
And we did.
239
724458
1347
12:18
Sort分类 of.
240
726389
1152
差不多吧。
12:20
Ends up split分裂 decision决定, 2 to 1.
241
728357
2587
结果是 2 比 1 的意见。
12:23
But the two judges法官 who ruled统治 against反对 us,
242
731743
2496
但是两位反对我们的法官
选择了完全不同的理由。
12:26
did so for completely全然 different不同 reasons原因.
243
734263
2241
12:29
The first one, Judge法官 LourieLourie,
244
737275
1826
第一位,法官洛里,
胡编乱造了他自己的生物理论 ——
12:31
made制作 up his own拥有 novel小说,
biological生物 theory理论 --
245
739125
3015
完全是胡说八道。
12:34
totally完全 wrong错误.
246
742164
1168
(笑声)
12:35
(Laughter笑声)
247
743356
1011
他觉得 Myriad 制造了
一种新化学物质 ——
12:36
He decided决定 Myriad无数的 had created创建
a new chemical化学 --
248
744391
2218
驴唇不对马嘴。
12:38
made制作 absolutely绝对 no sense.
249
746633
1865
Myriad 竟然对这一点没有争议,
真是令人大跌眼镜。
12:40
Myriad无数的 didn't even argue争论 this,
so it came来了 out of the blue蓝色.
250
748522
2786
12:43
The other, Judge法官 Moore穆尔,
251
751632
1977
另一位,法官莫尔,
说她基本同意我们说的
离体 DNA 是自然界的产物。
12:45
said she basically基本上 agreed同意 with us
that isolated孤立 DNA脱氧核糖核酸 is a product产品 of nature性质.
252
753633
3878
12:49
But she's like, "I don't want
to shake up the biotech生物技术 industry行业."
253
757987
3333
但是她声称“我不想动摇
生物技术产业的根基”,等等。
12:54
The third第三, Judge法官 Bryson布赖森,
254
762248
2572
第三位,法官布里森,
12:57
agreed同意 with us.
255
765233
1216
同意我们。
12:59
So now we sought追捧 review评论
by the Supreme最高 Court法庭.
256
767750
2531
于是我们申请最高法院复审。
当你向最高法院情愿时,
13:02
And when you petition请愿 the Supreme最高 Court法庭,
257
770305
2703
你需要提出一个
希望法院回应的问题。
13:05
you have to present当下 a question
that you want the Court法庭 to answer回答.
258
773032
3122
13:08
Usually平时 these questions问题 take the form形成
of a super-long超长 paragraph,
259
776534
3727
通常这些问题都是长长的一段话,
从句套从句,可以写满一页,
13:12
like a whole整个 page long
with lots and lots of clauses条款,
260
780285
3023
“其中包括”、“由此得知”,等等。
13:15
"wherein其中, this" and "therefore因此 that."
261
783332
2457
13:18
We submitted提交 perhaps也许
the shortest最短 question presented呈现 ever.
262
786294
3907
我们提交了可能是
有史以来最短的问题。
13:23
Four words:
263
791312
1213
四个词:
13:26
Are human人的 genes基因 patentable申请专利?
264
794220
2051
能否授予人类基因专利?
13:28
Now when Chris克里斯 first asked me
what I thought of these words,
265
796922
2824
克里斯第一次问我
觉得这个问题靠不靠谱时,
我说,“我不知道。
13:31
I said, "Well, I don't know.
266
799770
1374
我想你可能得说,
‘能否授予离体 DNA 专利?’”
13:33
I think you have to say,
'Is“是 isolated孤立 DNA脱氧核糖核酸 patentable申请专利?'"
267
801168
3167
13:36
"Nope.
268
804968
1169
“非也。
13:38
I want the justices法官 to have
the very same相同 reaction反应 that I had
269
806487
4621
我希望大法官的反应能和我在七年前
你跟我提这个问题时一模一样。”
13:43
when you brought this issue问题
to me seven years年份 ago."
270
811132
3087
13:46
Well, I certainly当然 couldn't不能
argue争论 with that.
271
814896
2157
好吧,我当然没理由反驳。
13:49
The Supreme最高 Court法庭 only hears就听
about one percent百分
272
817981
2883
最高法院只受理大约 1%
收到的案件,
13:52
of the cases that it receives收到,
273
820888
1666
他们接受了我们的。
13:54
and it agreed同意 to hear ours我们的.
274
822578
1591
13:57
The day of the oral口服 argument论据 arrives到达,
and it was really, really exciting扣人心弦 --
275
825772
4127
口头辩论那天到来时,
真的是太激动人心了——
法庭外排起了长队,
14:01
long line线 of people outside,
276
829923
1435
人们从凌晨 2:30 起就开始排队,
14:03
people had been standing常设 in line线
since以来 2:30 in the morning早上
277
831382
2764
希望能挤进法庭。
14:06
to try to get into the courthouse法院.
278
834170
1734
两个乳腺癌的组织,
14:07
Two breast乳房 cancer癌症 organizations组织,
279
835928
1971
乳腺癌行动组织和 FORCE,
14:09
Breast乳房 Cancer癌症 Action行动 and FORCE,
280
837923
1668
在法庭台阶上组织声援。
14:11
had organized有组织的 a demonstration示范
on the courthouse法院 steps脚步.
281
839615
2701
14:15
Chris克里斯 and I satSAT quietly悄悄 in the hallway门厅,
282
843232
2870
克里斯和我坐在走廊里一声不响,
14:18
moments瞬间 before he was to walk步行 in and argue争论
283
846776
3014
随后他走进法庭,
为他职业生涯中最重要的案件辩护。
14:21
the most important重要 case案件 of his career事业.
284
849814
2316
14:24
I was clearly明确地 more nervous紧张 than he was.
285
852765
2379
我显然比他更紧张。
14:28
But any remaining其余 panic恐慌 subsided消退
as I walked into the courtroom法庭
286
856096
4760
但是当我走进法庭时,
所有的慌张都不见了。
我看到周围都是熟悉的面孔:
14:32
and looked看着 around
at a sea of friendly友善 faces面孔:
287
860880
2813
14:36
our individual个人 women妇女 clients客户
288
864059
1765
我们的一位位女性客户,
她们毫无保留地分享了
自己的亲身经历;
14:37
who had shared共享 their
deeply personal个人 stories故事,
289
865848
2441
14:41
the geneticists遗传学家 who had taken采取 huge巨大 chunks
of time out of their busy careers职业生涯
290
869210
3626
有在百忙之中抽出大量时间
投身于这场斗争的遗传学家,
14:44
to dedicate奉献 themselves他们自己 to this fight斗争
291
872860
1825
14:47
and representatives代表 from a diverse多种 array排列
292
875122
2579
还有来自许多不同领域的代表:
医疗、患者救助、
14:49
of medical, patient患者 advocacy拥护,
293
877725
1887
环保和宗教组织,
14:51
environmental环境的 and religious宗教 organizations组织,
294
879636
2076
以及本案中向法院递交摘要的朋友。
14:53
who had submitted提交 friend朋友 of the court法庭
briefs内裤 in the case案件.
295
881736
3532
14:58
Also in the room房间 were three leaders领导者
of the Human人的 Genome基因组 Project项目,
296
886609
3025
同时在场的还有
三位人类基因组计划的先驱者,
包括 DNA 的发现者之一,
15:01
including包含 the co-discoverer共同发现者
of DNA脱氧核糖核酸 himself他自己,
297
889658
2672
詹姆斯·沃森。
15:04
James詹姆士 Watson沃森,
298
892354
1290
他也向法庭递交了简述,
15:05
who had submitted提交 a brief简要 to the court法庭,
299
893668
2146
其中他指出基因专利是“疯子行为”。
15:07
where he referred简称
to gene基因 patenting专利 as "lunacy疯狂行为."
300
895838
3511
(笑声)
15:11
(Laughter笑声)
301
899373
1848
出席法庭的群体背景之广,
15:13
The diversity多样 of the communities社区
represented代表 in this room房间
302
901245
3637
以及他们中每一位
为实现这一天而做出的贡献,
15:16
and the contributions捐款 each had made制作
to make this day a reality现实
303
904906
3441
都为我们岌岌可危的局势
打了一剂了强心针。
15:20
spoke volumes to what was at stake赌注.
304
908371
2297
15:23
The argument论据 itself本身 was riveting.
305
911386
2213
辩论本身非常有说服力。
15:26
Chris克里斯 argued争论 brilliantly出色.
306
914205
1663
克里斯出色地完成了辩论。
但是对我而言,
15:27
But for me,
307
915892
1245
最激动人心的一刻是
看着最高法院的大法官
15:29
the most thrilling惊险 aspect方面 was watching观看
the Supreme最高 Court法庭 justices法官 grapple抓钩
308
917161
3764
为离体 DNA 激烈争论,
15:32
with isolated孤立 DNA脱氧核糖核酸,
309
920949
1569
换着花样打比方,
激烈地交换意见,
15:34
through通过 a series系列 of colorful华美 analogies类比
and feisty易怒的 exchanges交流,
310
922542
3226
就和我们的法律团队
15:37
very much the same相同 way
as our legal法律 team球队 had doneDONE
311
925792
3340
过去七年中所做的一样。
15:41
for the past过去 seven years年份.
312
929156
1690
15:43
Justice正义 Kagan卡根 likened比喻 isolating隔离 DNA脱氧核糖核酸
313
931666
2656
大法官卡根把离体 DNA 比作
从亚马孙雨林中提取医疗植物。
15:46
to extracting提取 a medicinal药用 plant
from the Amazon亚马逊.
314
934346
2776
15:50
Justice正义 Roberts罗伯茨 distinguished杰出的 it
from carving雕刻 a baseball棒球 bat蝙蝠 from a tree.
315
938516
4010
大法官罗伯茨把它比作
把树木雕成棒球棒。
15:55
And in one of my absolutely绝对
favorite喜爱 moments瞬间,
316
943995
2482
以及绝对是我最喜欢的一个瞬间,
大法官索托马约尔宣称
离体 DNA “就是自然存在的”。
15:58
Justice正义 Sotomayor索托马约尔 proclaimed宣称的 isolated孤立 DNA脱氧核糖核酸
to be "just nature性质 sitting坐在 there."
317
946501
5269
(笑声)
16:03
(Laughter笑声)
318
951794
1100
16:05
We felt pretty漂亮 confident信心
leaving离开 the courtroom法庭 that day,
319
953318
2875
我们那天离开法庭时信心满满,
但我从未奢望这样的结局:
16:08
but I could never have
anticipated预期 the outcome结果:
320
956217
3006
16:12
nine to zero.
321
960574
1507
九比零。
16:15
"A naturally自然 occurring发生 DNA脱氧核糖核酸 segment分割
is a product产品 of nature性质,
322
963025
3722
“一段自然形成的 DNA 片段
是自然界的产物,
并不因为它被分离出体外
就可以被授予专利。
16:18
and not patent-eligible专利资格 merely仅仅 because
it has been isolated孤立.
323
966771
3047
16:22
And furthermore此外,
324
970394
1347
另外,
Myriad 并没有创造任何东西。”
16:23
Myriad无数的 did not create创建 anything."
325
971765
2545
16:28
Within 24 hours小时 of the decision决定,
326
976160
1996
判决生效后 24 小时内,
就有五个实验室宣布
16:30
five labs实验室 had announced公布
327
978180
1392
他们将开始提供 BRCA 基因的检测服务。
16:31
that they would begin开始 to offer提供 testing测试
for the BRCABRCA genes基因.
328
979596
3014
16:35
Some of them promised许诺 to offer提供 the tests测试
at a lower降低 price价钱 than Myriad'sMyriad的.
329
983149
3483
他们有些承诺检测的价格
将比 Myriad 的要低。
16:39
Some promised许诺 to provide提供
a more comprehensive全面 test测试
330
987142
2920
有些承诺将提供更全面的检测,
比 Myriad 提供的更多。
16:42
than the one Myriad无数的 was offering.
331
990086
1683
16:44
But of course课程 the decision决定
goes far beyond Myriad无数的.
332
992490
2838
不过显然,
这个决定远远不止影响 Myriad。
它终结了美国境内 25 年来
允许授予人类基因专利的行为。
16:47
It ends结束 a 25-year-年 practice实践
of allowing允许 patents专利 on human人的 genes基因
333
995352
4396
16:51
in the United联合的 States状态.
334
999772
1207
16:53
It clears清零 a significant重大 barrier屏障
to biomedical生物医药 discovery发现 and innovation革新.
335
1001383
4693
它为生物医疗领域的发现和创新
扫除了一个重要的障碍。
16:58
And it helps帮助 to ensure确保 that patients耐心
like Abigail阿比盖尔, Kathleen凯瑟琳 and Eileen艾琳
336
1006484
4901
它也有助于保证
像阿比盖尔、卡瑟琳和艾琳这样的患者
能够获得她们所需要的检测。
17:03
have access访问 to the tests测试 that they need.
337
1011409
2156
17:06
A few少数 weeks after the court法庭
issued发行 its decision决定,
338
1014991
3215
最高法院宣判几周之后,
我收到了一个邮件小包。
17:10
I received收到 a small package in the mail邮件.
339
1018230
2260
17:13
It was from Bob短发 Cook-Deegan库克 - 迪根,
340
1021246
1607
是鲍勃·库克-德根寄来的,
他是杜克大学的教授,
17:14
a professor教授 at Duke公爵 University大学
341
1022877
2269
是我和克里斯开始考虑
是否要开始准备此案时
17:17
and one the very first people
Chris克里斯 and I went to visit访问
342
1025170
3224
最先拜访的人之一。
17:20
when we started开始 to consider考虑
whether是否 to bring带来 this case案件.
343
1028418
2699
17:24
I opened打开 it up to find
a small stuffed填充的 animal动物.
344
1032033
2809
我打开包裹,
里面是一个小小的毛绒玩具。
17:28
(Laughter笑声)
345
1036344
2959
(笑声)
17:33
We took a big risk风险 in taking服用 this case案件.
346
1041568
2328
为了这个案件,
我们冒了很大的风险。
17:36
Part部分 of what gave us the courage勇气
to take that risk风险
347
1044722
2510
给予我们勇气面对风险的部分原因
是我们知道我们在做正确的事。
17:39
was knowing会心 that we were doing
the right thing.
348
1047256
2438
17:42
The process处理 took nearly几乎 eight years年份
from the start开始 to finish,
349
1050079
3730
从开始到结束,
整个过程将近八年,
经历了许多曲折和反复。
17:45
with many许多 twists曲折 and turns along沿 the way.
350
1053833
2221
17:48
A little luck运气 certainly当然 helped帮助,
351
1056578
1691
当然还借助了一点点运气,
17:50
but it was the communities社区
that we bridged桥接,
352
1058888
2812
但正是我们牵线拉到一起的群体,
正是我们创造的同盟,
17:53
the alliances联盟 that we created创建,
353
1061724
2091
让猪也飞上了天。
17:55
that made制作 pigs fly.
354
1063839
1420
17:57
Thank you.
355
1065802
1156
谢谢。
(掌声)
17:58
(Applause掌声)
356
1066982
5514
Translated by Luyao Zou
Reviewed by Edith Yang

▲Back to top

ABOUT THE SPEAKER
Tania Simoncelli - Policy expert
Tania 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.

More profile about the speaker
Tania Simoncelli | Speaker | TED.com