日期:2018-05-15 10:21





Hari Sreenivasan: The National Institutes of Health held events in seven cities and online today, all to sign up one million Americans who will voluntarily share personal medical information. The project is called "All of Us," and it is raising privacy concerns, but among the ambitious goals: To expand the use of precision genetic medicine and to include more minorities and women, traditionally underrepresented groups in medical research. Joining me now from Washington, D.C. is Lenny Bernstein who is covering the story for the "Washington Post." Give us an idea of how big this project is and what they’re trying to accomplish.

Lenny Bernstein: Sure. This project is probably the most ambitious effort to compile a repository of medical data that’s ever been undertaken. They want a million people to give them various forms of information, everything from filling out a survey to allowing them to sequence your entire genome. And they want people from all walks of life, all over the country, from different racial groups, ethnic groups and they’re taking all kinds of steps to make sure they get it.

Hari Sreenivasan: So what happens with that information once they get it, what are the applications, what are the uses, what do they hope they can get from that?

Lenny Bernstein: The applications are sort of endless at this point. The idea is to foster the growth of precision medicine, and precision medicine is tailoring therapies, but also preventions and cures hopefully to your particular set of needs. So the idea would be that we would have this giant repository of information that various researchers could delve into and examine and use to come up with approaches to all kinds of diseases. It is most easily understood right now in terms of cancer. But maybe we’ll discover something about asthma or maybe we’ll discover something about Parkinson’s disease that we never knew before we could examine all this data.


Hari Sreenivasan: In the wake of the Cambridge Analytica scandal that Facebook is facing and other data breaches all over the country and the world,how does the N.I.H. and the U.S. government plan to protect the information that perhaps a million people will give them?

Lenny Bernstein: From the examples that you just mentioned, we know that nothing is completely safe. Everything can be hacked. However, they have taken extraordinary precautions to protect this, in their reservoirs of data. They also are assuring you that it can never be used in a law enforcement situation. It can never be used in a judicial situation. They-- congress passed a law, with the eye towards this database of-- and they’ve included these certificates of confidentiality. So no matter what happens, even if the information goes online illegally, law enforcement can’t use it.

Hari Sreenivasan: So this is just weeks after the golden state killer was caught using D.N.A. evidence right?

Lenny Bernstein: It is. And I think that that is where people are going to have to make their own decisions. It’s really going to be a personal kind of situation. Some people say to themselves, I give away more information to Facebook every single day and what do I get for it? Nothing. I get ads and I get to be on Facebook. So if they want my whole genome and they want to give me back the result that may be worth it. Other people might say, you know, we’re talking about my electronic medical records, we’re talking about my genome, we’re talking about my activities, we’re talking about my environment and I’m just going to err on the side of caution and not go for it.

Hari Sreenivasan: Is there any assurance that the U.S. government’s going to give that says we are not going to share this information with any third party, no sort of private corporations or grant institutions that want to have a little peek even at the aggregate sets of data even if it’s anonymous?

Lenny Bernstein: I think that would defeat the purpose. I think those certificates of confidentiality and the protections that were put in place by the U.S. congress are supposed to keep that from happening. This is supposed to be information that’s available to researchers and to the people who participate.

Hari Sreenivasan: All right, Lenny Bernstein of the "Washington Post," thank you so much.

Lenny Bernstein: Thank you.




1.sign up 签约
He signed up as a steward with P&O Lines.


2.come up with 想出
Several of the members have come up with suggestions of their own.


3.in the wake of 紧随
In the wake of developments in science and technology, man has become more capable of conquering nature.
4.give away 捐赠
He was giving his collection away for nothing.
5.on the side of 站在一边
Some of the younger people seem to be on the side of reform.



哈里·斯雷尼瓦桑:今天美国国立卫生研究院在七座城市举行签愿活动,希望召集一百万名美国人签署协议,承诺自愿分享个人医疗信息e2SPh9%9=!2,X6O-vI3。线上活动同期举行*VFDB8eq.q[o69w。这个项目名为“All of Us”,此举引发了人们对隐私问题的关注,但其中一些目标颇具雄心:包括扩大精密遗传医学应用,以及扩大少数民族及妇女,这些传统上代表性不足的群体,在医学领域的研究UHB~^WtoT*sFFcIfX。《华盛顿邮报》负责此事报道的记者伦尼·伯恩斯坦从华盛顿特区与我们连线_gaPX,;&agQbmh。请告诉我们这个项目的规模以及目标lQGgR,@6yA!gdFJj(8z




哈里·斯雷尼瓦桑:Cambridge Analytica丑闻刚过,脸谱网又发生全国乃至全球的数据泄露丑闻,N.I.H.和美国政府计划如何保护这可能有一百万人的信息?