The problem with race-based medicine | Dorothy Roberts

翻译人员: Hancheng Li 校对人员: Yinchun Rui

15 years ago, I volunteered to participate in a research study

15年前，我作为志愿者 参加了一个涉及

基因检测的学术研究。

that involved a genetic test.

When I arrived at the clinic to be tested,

当我到了医院，准备接受检测时，

I was handed a questionnaire.

有人给了我一份问卷。

One of the very first questions asked me to check a box for my race:

最开头的几个问题中 有一个让我选择自己的种族：

White, black, Asian, or Native American.

白人、黑人、亚洲人还是印第安人。

I wasn't quite sure how to answer the question.

我不是很确定如何回答这个问题。

Was it aimed at measuring the diversity

它是为了衡量受试者的社会背景

of research participants' social backgrounds?

多样化程度有多高吗？

In that case, I would answer with my social identity,

这样的话，我就会写上我的社会身份，

and check the box for "black."

在“黑人”那一栏里打个勾。

But what if the researchers were interested in investigating

但是假如研究者感兴趣的是

some association between ancestry and the risk for certain genetic traits?

调查血统和某些基因特质之间的关系呢？

In that case, wouldn't they want to know something about my ancestry,

那样的话，他们大概就想知道我的血统，

which is just as much European as African?

也就是欧洲和非洲血统了吧？

那么他们会对我的基因有怎样的研究结果，

And how could they make scientific findings about my genes

if I put down my social identity as a black woman?

如果我写上了"黑人女性"的社会身份？

After all, I consider myself a black woman with a white father

毕竟，我把自己当成 一个有着白人父亲的黑人女性，

rather than a white woman with a black mother

而不是当成 一个有着黑人母亲的白人女性。

entirely for social reasons.

这完全是因为社会原因。

Which racial identity I check

我选择哪一个种族身份

has nothing to do with my genes.

与我的基因是毫无关联的。

Well, despite the obvious importance of this question

好吧，虽然这个问题

to the study's scientific validity,

明明对这个研究的科学有效性很重要，

I was told, "Don't worry about it,

但有人告诉我，“别在意这个，

just put down however you identify yourself."

你怎么看待自己，你就怎么选。”

So I check "black,"

所以我就填上了“黑人”，

but I had no confidence in the results of a study

但是我对这个研究的结果是没有信心的，

that treated a critical variable so unscientifically.

因为它以如此不严谨的方式 对待一个关键的变量。

That personal experience with the use of race in genetic testing

这次把种族因素加入基因检测的个人经历

got me thinking:

让我不禁思考起来：

Where else in medicine is race used to make false biological predictions?

医药领域还有没有其他地方利用 种族差异来做出错误的生物学推测结果？

Well, I found out that race runs deeply throughout all of medical practice.

我发现，种族问题在整个医药行业 都有很深的影响。

它会影响医生的诊断结果、

It shapes physicians' diagnoses,

measurements, treatments,

检测结果、医疗过程、

prescriptions,

处方，

even the very definition of diseases.

甚至连疾病的定义都有所不同。

And the more I found out, the more disturbed I became.

当我发现得越多，我就变得越不安。

Sociologists like me have long explained

我们社会学家一直以来

that race is a social construction.

都把种族解释为一种社会架构。

When we identify people as black, white, Asian, Native American, Latina,

当我们把人们分为黑人、白人、亚洲人、

印第安人、拉丁美洲人，

we're referring to social groupings

我们指的是一种社会团体，

with made up demarcations that have changed over time

它们有划定的界限， 但也随时间推移而改变，

and vary around the world.

而且界限在世界各地有所不同。

As a legal scholar, I've also studied

作为一个法学学者，我同样研究了

how lawmakers, not biologists,

立法者，而不是生物学家，

have invented the legal definitions of races.

是如何发明出种族的法律定义的。

And it's not just the view of social scientists.

这还不只是社会科学家的观点。

You remember when the map of the human genome

大家还记得人类基因组图

was unveiled at a White House ceremony in June 2000?

在2000年6月在白宫的一次典礼上 初次展出的时候吗？

President Bill Clinton famously declared,

比尔·克林顿总统的那句著名的声明，

"I believe one of the great truths

“我相信，从这次对 人类基因组的成功探索中

to emerge from this triumphant expedition

得出的一个伟大真理，

inside the human genome

is that in genetic terms,

就是在基因的角度上，

human beings, regardless of race,

全人类，不论种族的差异，

are more than 99.9 percent the same."

有超过99.9%是完全相同的。”

And he might have added

其实他本应该加一句，

that that less than one percent of genetic difference

那不到0.1%的基因组差异

doesn't fall into racial boxes.

并不属于种族的范畴。

Francis Collins, who led the Human Genome Project

弗朗西斯·柯林斯， 人类基因组计划的领导者，

and now heads NIH,

现在是美国国家卫生研究院院长，

echoed President Clinton.

也附和了克林顿总统。

"I am happy that today,

“我非常高兴，

the only race we're talking about is the human race."

我们今天讨论的唯一种族 是人类这个种族。”

Doctors are supposed to practice evidence-based medicine,

医生们应该提供基于 客观事实的诊疗方案，

and they're increasingly called to join the genomic revolution.

越来越多医生也加入了 基因组研究的革命。

But their habit of treating patients by race lags far behind.

但是他们依据种族差异 对待病人的坏习惯拖了后腿。

Take the estimate

举个例子，

of glomerular filtration rate, or GFR.

肾小球滤过率，简称GFR。

Doctors routinely interpret GFR,

医生们常常把GFR的数值，

this important indicator of kidney function, by race.

这个反映肾功能的重要指标， 用种族加以解读。

As you can see in this lab test,

正如你们在这次实验报告里看到的，

the exact same creatinine level,

完全一样的肌酸酐水平，

the concentration in the blood of the patient,

也就是病人血液中肌酸酐的浓度，

automatically produces a different GFR estimate

会自动产生不同的GFR估计值，

depending on whether or not the patient is African-American.

取决于病人是否是非裔美国人。

Why?

为什么啊？

I've been told it's based on an assumption

有人告诉过我，这是基于一种假设，

that African-Americans have more muscle mass

非裔美国人的肌肉总质量

than people of other races.

比其他种族的人要多。

But what sense does it make

但是这又是什么道理？

for a doctor to automatically assume

一个医生自然而然地就假设

I have more muscle mass than that female bodybuilder?

我比一个女健身爱好者有更多的肌肉？

Wouldn't it be far more accurate and evidence-based

要想以更准确、更基于客观事实的方式

to determine the muscle mass of individual patients

来判断每个病人的肌肉质量，

just by looking at them?

直接看一眼不就可以了吗？

Well, doctors tell me they're using race as a shortcut.

医生们告诉我，他们把种族当作一种捷径。

It's a crude but convenient proxy

这是一个相对粗糙但很方便的替代方式，

for more important factors, like muscle mass,

它可以代表其它更重要的因素， 比如肌肉质量、

enzyme level, genetic traits

酶水平、基因特质，

they just don't have time to look for.

而这些都是他们没时间去检测的。

But race is a bad proxy.

但是种族是个很差的替代品。

In many cases, race adds no relevant information at all.

在很多情况下，种族根本不能 提供任何相关的信息。

It's just a distraction.

这只是个分散注意力的东西罢了。

But race also tends to overwhelm the clinical measures.

但是种族倾向于取代临床检测的数据。

It blinds doctors to patients' symptoms,

它让医生对病人的症状视而不见，

family illnesses,

还包括家族疾病、

their history, their own illnesses they might have --

病人病史， 还有自身可能患有的疾病的问题——

all more evidence-based than the patient's race.

这些都比病人的种族要更加客观。

Race can't substitute for these important clinical measures

种族是不可以代替 这些重要的临床数据的，

without sacrificing patient well-being.

否则牺牲的是病人的健康。

Doctors also tell me race is just one of many factors

医生同样告诉我，种族只是

他们考虑的许多因素中的一个，

they take into account,

but there are numerous medical tests,

但是仍有很多的医学检测，

like the GFR,

正如GFR一样，

that use race categorically

是利用种族作为分类标准，

to treat black, white, Asian patients differently

以不同方式诊疗黑人、白人、亚洲病人，

just because of their race.

唯独因为他们种族不同。

Race medicine also leaves patients of color especially vulnerable

基于种族的药物也让有色人种 特别容易受到

偏见与陈规陋习的伤害。

to harmful biases and stereotypes.

Black and Latino patients are twice as likely

黑人和拉丁美洲病人，

不被给予止痛药物的几率是白人的两倍，

to receive no pain medication as whites

for the same painful long bone fractures

即便都要承受同样的长骨骨折的痛苦。

这都是因为一种成见，

because of stereotypes

认为黑人和棕色皮肤的人 痛感相对更弱，

that black and brown people feel less pain,

而且会夸大自己的痛感，

exaggerate their pain,

and are predisposed to drug addiction.

或者是容易对药物产生依赖性。

The Food and Drug Administration has even approved a race-specific medicine.

美国食品药监局甚至通过了 一种针对特定种族的药品。

它是一种叫做BiDil的胶囊，

It's a pill called BiDil

to treat heart failure in self-identified African-American patients.

专门治疗自我认定为非裔美国人 心脏衰竭的问题。

A cardiologist developed this drug without regard to race or genetics,

一位心脏学家开发出这种药品

是没有考虑种族和基因问题的，

but it became convenient

但是从商业角度来看，这样做很方便，

for commercial reasons

可以更容易地把药品销售给黑人。

to market the drug to black patients.

The FDA then allowed

食品药监局后来又同意了

the company, the drug company,

那个制药公司，

to test the efficacy in a clinical trial

在临床试验中测试药品的功效，

that only included African-American subjects.

但是受试对象只有非裔美国人。

It speculated

根据实验结果推测，

that race stood in as a proxy for some unknown genetic factor

种族可作为替代品 是因为存在某种未知的基因因素

that affects heart disease

会影响心脏疾病，

or response to drugs.

或者是让人对药品产生不同反应。

But think about the dangerous message it sent,

但是想想，这传递的是多么危险的信号：

that black people's bodies are so substandard,

黑人的身体标准是如此的低，

a drug tested in them

在他们身上测试过的药品

is not guaranteed to work in other patients.

都不能保证能在其他人身上起作用。

In the end, the drug company's marketing scheme failed.

结果，那个制药公司的营销策略失败了。

For one thing, black patients were understandably wary

原因就是，黑人们对 一种只有黑人能用的药品

of using a drug just for black people.

是非常警惕的，这很容易理解。

有一位年长的黑人女性 在社区集会上站起来大喊，

One elderly black woman stood up in a community meeting and shouted,

“把白人吃的药给我拿过来！”

"Give me what the white people are taking!"

(Laughter)

(笑声)

And if you find race-specific medicine surprising,

如果你觉得针对种族的药品很令人惊讶，

wait until you learn

那么你还要知道

that many doctors in the United States

美国有很多的医生

都仍在使用一种改进版的

still use an updated version

of a diagnostic tool

诊断方法，

最早是由奴隶社会时期的 一位外科医生所发明的，

that was developed by a physician during the slavery era,

a diagnostic tool that is tightly linked

这种诊断方法跟奴役的合法化

to justifications for slavery.

有着非常紧密的联系。

Dr. Samuel Cartwright graduated

塞缪尔·卡特赖特医生毕业于

from the University of Pennsylvania Medical School.

宾夕法尼亚大学医学院。

He practiced in the Deep South before the Civil War,

他在美国内战之前在美国东南部工作，

是当时称作“黑奴药品”领域的 一位著名专家。

and he was a well-known expert on what was then called "Negro medicine."

他推广了疾病的种族概念，

He promoted the racial concept of disease,

that people of different races suffer from different diseases

声称不同的种族会遭受不同的疾病，

而且对普通疾病的感受也有所不同。

and experience common diseases differently.

Cartwright argued in the 1850s

卡特赖特在19世纪50年代曾表示，

that slavery was beneficial for black people

奴役对黑人来说其实是有益的，

for medical reasons.

这是有医学依据的。

He claimed that because black people have lower lung capacity than whites,

他声称，因为黑人的肺活量低于白人，

forced labor was good for them.

所以强制劳动对他们有好处。

He wrote in a medical journal,

他在一本医学日志中写道，

“当他们受白人奴役， 至关重要的新鲜血液流经大脑时，

"It is the red vital blood sent to the brain

that liberates their minds when under the white man's control,

他们的思想才能获得解放，

and it is the want of sufficiency of red vital blood

而当他们自由时， 大脑得不到充足的新鲜血液，

that chains their minds to ignorance and barbarism when in freedom."

会让他们变得无知和野蛮。”

To support this theory, Cartwright helped to perfect

为了支持这个理论， 卡特赖特协助完善了

a medical device for measuring breathing called the spirometer

一个称为肺活量计的 用于监测呼吸的医学仪器，

to show the presumed deficiency in black people's lungs.

试图展现黑人肺部所谓的“缺陷”。

Today, doctors still uphold Cartwright's claim

现在，医生们依然支持卡特赖特的理论，

the black people as a race

认为黑人整个种族

都比白人肺活量更低。

have lower lung capacity than white people.

Some even use a modern day spirometer

有些人使用的一种现代的肺活量计，

that actually has a button labeled "race"

仪器上竟然有一个标着“种族”的按钮，

so the machine adjusts the measurement

让仪器根据每个病人的种族

来调整检测的结果。

for each patient according to his or her race.

It's a well-known function called "correcting for race."

这是个有名的功能，叫做“种族校正”。

The problem with race medicine extends far beyond misdiagnosing patients.

种族药物的危害远不止对病人的误诊。

Its focus on innate racial differences in disease

它对疾病先天性、种族性差异的强调，

diverts attention and resources

使得对其他社会决定因素的 注意力和资源发生了转移，

from the social determinants

而这些因素都

that cause appalling racial gaps in health:

导致了种族间医疗水平的惊人差异：

lack of access to high-quality medical care;

高水平医疗的匮乏；

food deserts in poor neighborhoods;

贫困社区的食物紧缺问题；

exposure to environmental toxins;

与环境中的毒素的接触；

high rates of incarceration;

极高的监禁率；

and experiencing the stress of racial discrimination.

还有种族歧视的种种压力。

You see, race is not a biological category

可以看到，种族不属于生物学分类，

that naturally produces these health disparities

它不会因为基因差异

because of genetic difference.

自然地导致医疗水平的差异。

Race is a social category

种族应该是一个社会学分类，

that has staggering biological consequences,

却在生物学领域产生了非常严重的后果，

but because of the impact of social inequality on people's health.

社会不平等问题 会对民众健康造成直接冲击。

Yet race medicine pretends the answer to these gaps in health

然而种族药品让我们误以为 这些健康差异问题

can be found in a race-specific pill.

只需一粒指定种族的胶囊来解决。

It's much easier and more lucrative

更简单、更有利可图的方式

to market a technological fix

是把解决医疗差异的技术问题

for these gaps in health

通过市场营销来解决，

than to deal with the structural inequities that produce them.

而不是对付真正产生差异的 社会架构不平等问题。

The reason I'm so passionate about ending race medicine

我如此热衷于禁止种族药物的工作，

isn't just because it's bad medicine.

绝不仅是因为它是一种不好的药物。

I'm also on this mission

我执行这个使命

because the way doctors practice medicine

是因为医生们从事医药行业的方式，

continues to promote a false and toxic view of humanity.

一直在宣传一种错误、有害的人道观念。

Despite the many visionary breakthroughs in medicine we've been learning about,

除去我们所了解的 那么多富有远见的医药学突破，

there's a failure of imagination

在涉及种族问题的时候，

when it comes to race.

人们的想象力突然丧失了。

Would you imagine with me, just a moment:

大家跟我一起想象一下：

What would happen if doctors stopped treating patients by race?

如果医生不再依据种族来给病人看病， 会发生什么事呢？

Suppose they rejected

假如，他们不再采用

an 18th-century classification system

一个18世纪的分类系统，

and incorporated instead the most advanced knowledge

而是利用当今最先进的知识，

of human genetic diversity and unity,

有关人类基因多样性和统一性的知识，

that human beings cannot be categorized into biological races?

最终得出人类不能被 简单分类成生物学种族的结论？

What if, instead of using race as a crude proxy

假如，我们不再用种族来粗糙地替代

for some more important factor,

其它更为重要的因素，

doctors actually investigated and addressed that more important factor?

而且医生也开始仔细检测和采纳 那些更为重要的因素，会怎么样呢？

What if doctors joined the forefront

又假如，医生们都加入了革命的前线，

of a movement to end the structural inequities

去终结由种族歧视，

caused by racism,

而非基因导致的

not by genetic difference?

社会结构的不平等性，又会如何呢？

Race medicine is bad medicine,

种族药品是很拙劣的药品，

it's poor science

它是一种伪科学，

and it's a false interpretation of humanity.

而且是对人道的一种错误解读。

It is more urgent than ever

迫在眉睫的是，

to finally abandon this backward legacy

要彻底摒弃这些落后的历史遗留产物，

and to affirm our common humanity

并且让我们的人道主义思想深深扎根，

by ending the social inequalities that truly divide us.

打破人与人之间真正的壁垒—— 即社会的不平等现象。

谢谢。

Thank you.

(Applause)

(鼓掌)

Thank you. Thanks.

谢谢大家。谢谢。

Thank you.

谢谢你们。