美国国家公共电台 NPR Researchers Gather Health Data For 'All Of Us'

 

LAUREN FRAYER, HOST:

Now to a story about a big data approach to medicine with a big price tag - hundreds of millions of taxpayer¹ dollars. It's called the All of Us Precision Medicine Initiative. It's an effort to gather blood samples, medical information and fitness readouts from a million Americans. The goal - to create a huge pool of data for scientists to mine for clues about health and disease. Proponents² hope All of Us will be revolutionary. Critics aren't so sure, as NPR's Richard Harris reports.

RICHARD HARRIS, BYLINE³: The plan is to recruit a million Americans to sign up for a program that will not only gather all sorts of medical data about them, but follow them for at least a decade, possibly much longer. Their electronic medical records will end up in huge databases. The physical samples of blood and urine will end up in an industrial park in Rochester, Minn.

MINE CICEK: This used to be an old warehouse⁴, but when we moved in three, four years ago, we really built a laboratory, and that's in the space, so when you go in, you'll really see.

HARRIS: Mine Cicek is an assistant professor at the Mayo Clinic, which runs this cavernous lab. The warehouse roof covers an acre and a half of floor space. Power cords drop down from the ceiling to lab benches and robotic instruments lined up row after row - these will process blood and urine samples collected from around the country, which will ultimately end up in freezers. At the moment, the program is just running pilot studies.

CICEK: But when we really launch and up to speed, it's going to be close to, maybe even more than, a thousand participants.

HARRIS: Every day?

CICEK: Every day.

HARRIS: Cicek leads us into another part of the warehouse filled not only with ordinary-looking freezers, but one behemoth, 74 feet long and more than 15 feet wide.

CICEK: So this is the back of the freezer. So we'll go around so you'll have a appreciation⁵ of how big this is.

HARRIS: It's bigger than a railroad boxcar. We loop around to the front, which has a glowing green slit⁶.

CICEK: The green light that you see, it has a door. If you want to come this way...

HARRIS: Samples get fed through this door. Inside, robots pick up the samples, read bar codes stamped on them and store them in individual freezers hidden inside.

Do people ever go in there?

CICEK: Well, in an emergency, we have a red button in front. When you push that red button, everything stops, including the robotics because everything is in minus 80. And there's a section where it's only minus 20. But again, it's minus 20. You don't want to be in there unless you really, really want to go in there.

HARRIS: When the system is fully⁷ up and running, she says, the incoming tubes of blood will be processed by a fully automated⁸ system. So all she'll have to do is pick up boxes of samples and feed them into this freezer. And the scientific output for this enterprise - that's less tangible⁹ at the moment.

ERIC DISHMAN: It's really a research resource that we're building for the whole country, and if not the whole world.

HARRIS: Eric Dishman runs the National Institutes of Health's All of Us Research Program from another anonymous¹⁰ building, this one in the Washington, D.C., suburb of Rockville, Md. His job is to build it and then make the data widely available to top biomedical researchers on down.

DISHMAN: In fact, we want to work really hard to make that resource available to community colleges and even high school curriculums so sort of the brainpower per problem across the country is greater than what it is today.

HARRIS: It's kind of like the original effort to sequence the human genome. It's not an end in itself. It's a tool. And the hope is to bring the big data revolution that has reshaped online commerce and social media and apply it to science.

DISHMAN: We keep looking at diseases in isolation¹¹, and the All of Us Research Program is really trying to bring a diversity of people, a diversity of health conditions and a diversity of data sets to try to understand us more in our complexity¹² and not simplify everything as just one single disease.

HARRIS: Scientists might scour¹³ this pile of data for unexpected patterns or dive into it looking for answers to specific questions. Dishman himself has lived through a 23-year odyssey¹⁴ with kidney disease and kidney cancer and uses his experience as an example.

DISHMAN: I had $6 million of care. Now, looking back at it, scientists tell me that 90 percent of everything we ever did to me was destined¹⁵ to be wrong.

HARRIS: Medicine is often a matter of trial and error, so that's not so unusual. But Dishman also had the DNA¹⁶ in his tumor¹⁷ deciphered, and that gave scientists yet one more clue about what to do and lead to an effective treatment, though even that process wasn't entirely¹⁸ scientific.

DISHMAN: I'm nervous about sharing this story because it is both hopeful, but I also know there was a lot of science, but also a lot of luck that this worked for me.

HARRIS: Dishman regards his story as a lesson about what could be.

DISHMAN: We are in the early days of precision medicine. And this is exactly why we need to accelerate the science and the discovery so there's an evidence base for the decisions and choices that we're making for you as an individual, as well as the general population.

HARRIS: Among those skeptical¹⁹ about the big talk and big investment behind precision medicine is Ken²⁰ Weiss, who recently retired²¹ from his post as a genetics professor at Penn State.

KENNETH WEISS: I think there will be some progress, but I also think this is as much of a slogan to get funding as it is a serious promise.

HARRIS: Gathering²³ huge data sets may be useful for merchants trying to suss out your spending patterns, but he cautions that in biology, it may lead to more confusion rather than clarity. That's because many health conditions involve hundreds of genes²⁴, and the pattern is different in every individual. As it is, the more scientists look, the more variants²⁵ they find. So think about what that will look like when they have gathered a million samples.

WEISS: And bigger and bigger samples will just identify more and more very rare or very weak effects.

HARRIS: When the human genome was sequenced, many scientists hoped they would quickly be able to identify the common genes that are responsible for common diseases, like diabetes²⁶, heart disease, high blood pressure and so on. That simply didn't pan out. There were no such variants. Weiss says it's time to cut our losses pursuing that concept.

WEISS: I think we're already at the diminishing-returns point for many of the complex traits that are important to our society in terms of health.

HARRIS: The solutions to those common conditions lie largely in changing diets, exercise habits and tobacco addiction²⁷. Focusing genetic²² resources on diseases that do have strong genetic components²⁸ does make a lot of sense, he says.

WEISS: But pouring more and more investment into these huge studies based on the idea that if you search enough computer data, you will get an answer, I think is a false promise.

HARRIS: Why not plunk down a couple hundred million dollars a year and see where this takes us?

WEISS: Why not plunk down that couple hundred million dollars a year to work on genetic therapies for known genetic traits? And once those are developed, which I think they will be because I think humans are very good at engineering, then we can extend to the less clear-cut genetic traits.

HARRIS: Given all the momentum²⁹ built up behind the Precision Medicine Initiative, Weiss is not voicing a popular point of view. But the retired geneticist says he has no axe³⁰ to grind and no brilliant insights about what would actually lead to medical breakthroughs. His concern is that biomedical research is all-in on this idea because they have a tool they are eager to use, not because they have a clear path ahead. Richard Harris, NPR News.

1 taxpayer   

n.纳税人

参考例句：

• The new scheme will run off with a lot of the taxpayer's money.这项新计划将用去纳税人许多钱。
• The taxpayer are unfavourably disposed towards the recent tax increase.纳税者对最近的增加税收十分反感。

2 proponents   

n.（某事业、理论等的）支持者，拥护者( proponent的名词复数 )

参考例句：

• Reviewing courts were among the most active proponents of hybrid rulemaking procedures. 复审法院是最积极的混合型规则制定程序的建议者。 来自英汉非文学 - 行政法
• Proponents of such opinions were arrested as 'traitors. ' 提倡这种主张的人马上作为“卖国贼”逮捕起来。 来自辞典例句

3 byline   

n.署名；v.署名

参考例句：

• His byline was absent as well.他的署名也不见了。
• We wish to thank the author of this article which carries no byline.我们要感谢这篇文章的那位没有署名的作者。

4 warehouse   

n.仓库；vt.存入仓库

参考例句：

• We freighted the goods to the warehouse by truck.我们用卡车把货物运到仓库。
• The manager wants to clear off the old stocks in the warehouse.经理想把仓库里积压的存货处理掉。

5 appreciation   

n.评价；欣赏；感谢；领会，理解；价格上涨

参考例句：

• I would like to express my appreciation and thanks to you all.我想对你们所有人表达我的感激和谢意。
• I'll be sending them a donation in appreciation of their help.我将送给他们一笔捐款以感谢他们的帮助。

6 slit   

n.狭长的切口；裂缝；vt.切开，撕裂

参考例句：

• The coat has been slit in two places.这件外衣有两处裂开了。
• He began to slit open each envelope.他开始裁开每个信封。

7 fully   

adv.完全地，全部地，彻底地；充分地

参考例句：

• The doctor asked me to breathe in,then to breathe out fully.医生让我先吸气，然后全部呼出。
• They soon became fully integrated into the local community.他们很快就完全融入了当地人的圈子。

8 automated   

a.自动化的

参考例句：

• The entire manufacturing process has been automated. 整个生产过程已自动化。
• Automated Highway System (AHS) is recently regarded as one subsystem of Intelligent Transport System (ITS). 近年来自动公路系统(Automated Highway System,AHS)，作为智能运输系统的子系统之一越来越受到重视。

9 tangible   

adj.有形的，可触摸的，确凿的，实际的

参考例句：

• The policy has not yet brought any tangible benefits.这项政策还没有带来任何实质性的好处。
• There is no tangible proof.没有确凿的证据。

10 anonymous   

adj.无名的；匿名的；无特色的

参考例句：

• Sending anonymous letters is a cowardly act.寄匿名信是懦夫的行为。
• The author wishes to remain anonymous.作者希望姓名不公开。

11 isolation   

n.隔离，孤立，分解，分离

参考例句：

• The millionaire lived in complete isolation from the outside world.这位富翁过着与世隔绝的生活。
• He retired and lived in relative isolation.他退休后，生活比较孤寂。

12 complexity   

n.复杂(性)，复杂的事物

参考例句：

• Only now did he understand the full complexity of the problem.直到现在他才明白这一问题的全部复杂性。
• The complexity of the road map puzzled me.错综复杂的公路图把我搞糊涂了。

13 scour   

v.搜索；擦，洗，腹泻，冲刷

参考例句：

• Mother made me scour the family silver.母亲让我擦洗家里的银器。
• We scoured the telephone directory for clues.我们仔细查阅电话簿以寻找线索。

14 odyssey   

n.长途冒险旅行；一连串的冒险

参考例句：

• The march to Travnik was the final stretch of a 16-hour odyssey.去特拉夫尼克的这段路是长达16小时艰险旅行的最后一程。
• His odyssey of passion, friendship,love,and revenge was now finished.他的热情、友谊、爱情和复仇的漫长历程，到此结束了。

15 destined   

adj.命中注定的；(for)以…为目的地的

参考例句：

• It was destined that they would marry.他们结婚是缘分。
• The shipment is destined for America.这批货物将运往美国。

16 DNA   

(缩)deoxyribonucleic acid 脱氧核糖核酸

参考例句：

• DNA is stored in the nucleus of a cell.脱氧核糖核酸储存于细胞的细胞核里。
• Gene mutations are alterations in the DNA code.基因突变是指DNA密码的改变。

17 tumor   

n.（肿）瘤，肿块(英)tumour

参考例句：

• He was died of a malignant tumor.他死于恶性肿瘤。
• The surgeons irradiated the tumor.外科医生用X射线照射那个肿瘤。

18 entirely   

ad.全部地，完整地；完全地，彻底地

参考例句：

• The fire was entirely caused by their neglect of duty. 那场火灾完全是由于他们失职而引起的。
• His life was entirely given up to the educational work. 他的一生统统献给了教育工作。

19 skeptical   

adj.怀疑的，多疑的

参考例句：

• Others here are more skeptical about the chances for justice being done.这里的其他人更为怀疑正义能否得到伸张。
• Her look was skeptical and resigned.她的表情是将信将疑而又无可奈何。

20 ken   

n.视野，知识领域

参考例句：

• Such things are beyond my ken.我可不懂这些事。
• Abstract words are beyond the ken of children.抽象的言辞超出小孩所理解的范围.

21 retired   

adj.隐退的，退休的，退役的

参考例句：

• The old man retired to the country for rest.这位老人下乡休息去了。
• Many retired people take up gardening as a hobby.许多退休的人都以从事园艺为嗜好。

22 genetic   

adj.遗传的，遗传学的

参考例句：

• It's very difficult to treat genetic diseases.遗传性疾病治疗起来很困难。
• Each daughter cell can receive a full complement of the genetic information.每个子细胞可以收到遗传信息的一个完全补偿物。

23 gathering   

n.集会，聚会，聚集

参考例句：

• He called on Mr. White to speak at the gathering.他请怀特先生在集会上讲话。
• He is on the wing gathering material for his novels.他正忙于为他的小说收集资料。

24 genes   

n.基因( gene的名词复数 )

参考例句：

• You have good genes from your parents, so you should live a long time. 你从父母那儿获得优良的基因，所以能够活得很长。 来自《简明英汉词典》
• Differences will help to reveal the functions of the genes. 它们间的差异将会帮助我们揭开基因多种功能。 来自英汉非文学 - 生命科学 - 生物技术的世纪

25 variants   

n.变体( variant的名词复数 )；变种；变型；（词等的）变体

参考例句：

• Those variants will be preserved in the'struggle for existence". 这些变异将在“生存竞争”中被保留下来。 来自辞典例句
• Like organisms, viruses have variants, generally called strains. 与其他生物一样，病毒也有变种，一般称之为株系。 来自辞典例句

26 diabetes   

n.糖尿病

参考例句：

• In case of diabetes, physicians advise against the use of sugar.对于糖尿病患者，医生告诫他们不要吃糖。
• Diabetes is caused by a fault in the insulin production of the body.糖尿病是由体內胰岛素分泌失调引起的。

27 addiction   

n.上瘾入迷，嗜好

参考例句：

• He stole money from his parents to feed his addiction.他从父母那儿偷钱以满足自己的嗜好。
• Areas of drug dealing are hellholes of addiction,poverty and murder.贩卖毒品的地区往往是吸毒上瘾、贫困和发生谋杀的地方。

28 components   

（机器、设备等的）构成要素，零件，成分； 成分( component的名词复数 )； [物理化学]组分； [数学]分量； （混合物的）组成部分

参考例句：

• the components of a machine 机器部件
• Our chemistry teacher often reduces a compound to its components in lab. 在实验室中化学老师常把化合物分解为各种成分。

29 momentum   

n.动力，冲力，势头；动量

参考例句：

• We exploit the energy and momentum conservation laws in this way.我们就是这样利用能量和动量守恒定律的。
• The law of momentum conservation could supplant Newton's third law.动量守恒定律可以取代牛顿第三定律。

30 axe   

n.斧子；v.用斧头砍，削减

参考例句：

• Be careful with that sharp axe.那把斧子很锋利，你要当心。
• The edge of this axe has turned.这把斧子卷了刃了。