The problem with race-based medicine | Dorothy Roberts

譯者: Ann Chen 審譯者: Regina Chu

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

15 年前我志願參加一項有關於

that involved a genetic test.

基因測試的研究調查。

When I arrived at the clinic to be tested,

當我到達門診準備接受測試時，

I was handed a questionnaire.

我拿到一張問卷表。

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

前面幾個問題之一 是要我勾選我的人種：

White, black, Asian, or Native American.

白人、黑人、 亞洲人、美洲原住民。

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

我不確定該如何回答這問題。

Was it aimed at measuring the diversity

它是否旨在衡量

of research participants' social backgrounds?

測試者社會背景的差異？

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

如果是那樣， 我就會用我的社會身份回答

and check the box for "black."

並勾選「黑人」。

But what if the researchers were interested in investigating

但如果是研究人員想調查

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

世系與某些基因特徵的風險 之關聯性呢？

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

如果是那樣，那他們不就是 要知道一些有關我世系的事情，

which is just as much European as African?

那既有歐洲的，也有非洲的。

And how could they make scientific findings about my genes

如果我寫我的社會身份是黑人婦女， 他們要怎樣根據我的基因下科學結論？

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

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

畢竟，我認為我自己是一位 有白人父親的黑人婦女，

rather than a white woman with a black mother

而不是一位有黑人母親的白人婦女，

entirely for social reasons.

完全基於社會的緣故。

Which racial identity I check

我勾選那個人種身份

has nothing to do with my genes.

和我的基因一點都不相干。

Well, despite the obvious importance of this question

儘管這問題對那項研究的 科學有效性十分重要，

to the study's scientific validity,

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

他們告訴我：「別擔心，

just put down however you identify yourself."

只要寫下你怎麼認定 你自己就可以。」

So I check "black,"

所以我勾了「黑人」，

but I had no confidence in the results of a study

但我對這研究結果實在毫無信心，

that treated a critical variable so unscientifically.

因為它對一個重要變項 處理得這麼不科學。

That personal experience with the use of race in genetic testing

這次在基因測試上 使用人種的個人經驗，

got me thinking:

讓我思考到：

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

在醫學還有那些地方是用到人種， 而作出錯誤的生物預測？

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

我發現在整個醫學應用上， 「人種」還涉入頗深的呢。

It shapes physicians' diagnoses,

它也影響醫生的診斷、

measurements, treatments,

測量、治療、

prescriptions,

用藥處方、

even the very definition of diseases.

甚至疾病的定義都有影響。

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

我發現越多就越覺得不安，

Sociologists like me have long explained

像我一樣的社會學家長久以來 闡明種族是一種社會結構。

that race is a social construction.

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

當我們將人區分為黑人、白人、 亞洲人、美洲原住民、拉丁美洲人，

we're referring to social groupings

這是在指隨時間改變 我們所劃分出來的社會群組，

with made up demarcations that have changed over time

and vary around the world.

而在世界各地劃分法也不同。

As a legal scholar, I've also studied

身為一個法律學者，我也研究了

how lawmakers, not biologists,

立法者──而不是生物學家──

have invented the legal definitions of races.

如何定義法律上的種族。

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

而這不只是社會學家的觀點而已。

You remember when the map of the human genome

你記得當人類基因組的圖譜，

was unveiled at a White House ceremony in June 2000?

於 2000 年六月 在白宮的典禮被公開時嗎？

President Bill Clinton famously declared,

比爾．克林頓總統著名的宣告：

"I believe one of the great truths

「我相信從長期 成功地研究人類基因組，

to emerge from this triumphant expedition

所得到的重大事實之一， 在基因方面來說，

inside the human genome

is that in genetic terms,

human beings, regardless of race,

人類──不分種族──

are more than 99.9 percent the same."

有超過 99.9% 是相同的。」

And he might have added

他也許還要再說：

that that less than one percent of genetic difference

「少於 1% 的基因差異，

doesn't fall into racial boxes.

不會落在人種這個框架裡。」

Francis Collins, who led the Human Genome Project

法蘭西斯．柯林斯領導了 「人類基因組計畫」，

and now heads NIH,

現為美國國立衛生研究院院長，

echoed President Clinton.

響應了克林頓總統：

"I am happy that today,

「我今天很高興，

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

因為我們今日所討論的 唯一人種就是人類。」

Doctors are supposed to practice evidence-based medicine,

醫生本應依照實證醫學進行診療，

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

要求他們參與基因組改革的 呼聲日漸增加，

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

但他們遠遠落後停在習慣性 以人種區分來治療病患。

Take the estimate

就拿評估

of glomerular filtration rate, or GFR.

腎小球濾過率（GFR）來說，

Doctors routinely interpret GFR,

醫生例行判讀腎小球濾過率

this important indicator of kidney function, by race.

為重要的腎功能指標， 但依人種而異。

As you can see in this lab test,

就如你現在看到這張檢驗報告，

the exact same creatinine level,

完全相同的肌酸酐數值，

the concentration in the blood of the patient,

也就是肌酸酐在血中濃度，

automatically produces a different GFR estimate

會自動產生不同的 GFR 預測值，

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

依病人是否為非裔美國人而定。

Why?

為什麼呢？

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

他們告訴我這是基於一種假設：

that African-Americans have more muscle mass

非裔美國人比其他人種的 肌肉量較多。

than people of other races.

But what sense does it make

但是醫師直接假設我比一位女性 健美員的肌肉量多，這是什麼道理？

for a doctor to automatically assume

I have more muscle mass than that female bodybuilder?

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

如果用目測來估計一個人的肌肉量， 不會來得更有根據、更準確嗎？

to determine the muscle mass of individual patients

just by looking at them?

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

醫生告訴我， 他們用人種當做一種捷徑，

It's a crude but convenient proxy

對一些比較重要的因素， 它是個粗略簡便的替代法，

for more important factors, like muscle mass,

例如肌肉量、酶的濃度、基因特徵，

enzyme level, genetic traits

they just don't have time to look for.

他們時間有限，無法一一去查。

But race is a bad proxy.

但人種是個很不好的替代法，

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

許多情況下， 人種根本不會增加相關資訊。

It's just a distraction.

它只會讓人轉移注意力而已。

But race also tends to overwhelm the clinical measures.

但人種往往會蓋過臨床評估，

It blinds doctors to patients' symptoms,

醫生因而疏忽病人症狀、

family illnesses,

家族病史、

their history, their own illnesses they might have --

病人病史、 病人自己可能有的疾病等，

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

這些都比病人的人種更有據可依。

Race can't substitute for these important clinical measures

人種不能取代這些重要的臨床評估，

without sacrificing patient well-being.

否則會犧牲病人的健康。

Doctors also tell me race is just one of many factors

醫生還告訴我，人種只是他們 考量的許多因素之一，

they take into account,

but there are numerous medical tests,

還有許多醫學檢驗

like the GFR,

如同 GFR 一樣

that use race categorically

使用人種分類，

to treat black, white, Asian patients differently

對黑人、白人、亞裔病人 以不同方式處理，

just because of their race.

只因為他們的種族。

Race medicine also leaves patients of color especially vulnerable

種族醫學也讓有色病患 特別容易遭到

to harmful biases and stereotypes.

有害的偏見與陳規。

Black and Latino patients are twice as likely

黑人和拉丁美洲病患 幾乎兩倍於白人，

to receive no pain medication as whites

面對相同疼痛的長骨骨折時， 沒有止痛藥治療；

for the same painful long bone fractures

because of stereotypes

因為陳舊觀念認為

that black and brown people feel less pain,

黑人及棕色皮膚病患較能忍受疼痛、

exaggerate their pain,

誇大他們的痛感、

and are predisposed to drug addiction.

及較傾向於有毒癮。

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

美國食品與藥物管理局甚至 許可使用一種特定種族用藥，

It's a pill called BiDil

這名叫 BiDil 的藥片

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

用在治療自稱為非裔美國人的 心臟衰竭患者。

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

研發這種藥的心臟科醫師 並沒有考慮人種或基因，

but it became convenient

但基於方便商業的理由

for commercial reasons

to market the drug to black patients.

將此藥銷售給黑人病患。

The FDA then allowed

那時 FDA 同意

the company, the drug company,

製藥公司

to test the efficacy in a clinical trial

做臨床實驗以測其藥效，

that only included African-American subjects.

而對象只用在非裔美國人身上。

It speculated

它推斷

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

人種可作為一些 未知基因因素的替代項目，

that affects heart disease

這未知因素會 影響心臟病或是對藥的反應。

or response to drugs.

But think about the dangerous message it sent,

但想想它傳遞的危險訊息，

that black people's bodies are so substandard,

黑人的身體 是低於標準的（很差的），

a drug tested in them

在他們身上試驗的藥物

is not guaranteed to work in other patients.

並不保證對其他病人也有效。

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

最後製藥公司的銷售計劃失敗了。

For one thing, black patients were understandably wary

不難了解，一個原因是黑人病患 對這只能用於黑人的藥十分機警。

of using a drug just for black people.

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

一位年長的黑人婦女 在一個社區會議站起來高喊：

"Give me what the white people are taking!"

「給我白人使用的藥！」

(Laughter)

（笑聲）

And if you find race-specific medicine surprising,

如果你對特定人種用藥很吃驚，

wait until you learn

那麼你會更訝異於

that many doctors in the United States

美國許多醫生 仍在用一種診斷方法，

still use an updated version

那是在奴隸時期 一位醫師所制定的更新版本。

of a diagnostic tool

that was developed by a physician during the slavery era,

a diagnostic tool that is tightly linked

這診斷方法與 「蓄奴的正當性」有密切關聯。

to justifications for slavery.

Dr. Samuel Cartwright graduated

賽繆爾．卡特賴特醫生畢業於

from the University of Pennsylvania Medical School.

賓夕法尼亞大學醫學院。

He practiced in the Deep South before the Civil War,

在南北戰爭前， 他執業於美國深南部，

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

他是當時所謂的「黑人醫學」名醫。

He promoted the racial concept of disease,

他發起了人種疾病的概念，

that people of different races suffer from different diseases

也就是不同人種感染的疾病也不同，

and experience common diseases differently.

連罹患一般疾病也相異。

Cartwright argued in the 1850s

在 1850 年代，卡特賴特辯稱

that slavery was beneficial for black people

基於醫學理由， 奴隷制度對黑人是有利的。

for medical reasons.

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

他宣稱因為黑人的肺活量比白人低，

forced labor was good for them.

強迫勞動對他們有好處。

He wrote in a medical journal,

他在醫學雜誌上寫道：

"It is the red vital blood sent to the brain

「在白人的控制下，紅而有力的 血液送到腦部，解放了他們的思想；

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

and it is the want of sufficiency of red vital blood

自由時，缺乏紅而有力的血液，所以 束縛他們的思想，導致無知和野蠻。」

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

To support this theory, Cartwright helped to perfect

為了支持這理論，卡特賴特協助製造

a medical device for measuring breathing called the spirometer

一種測量呼吸用的醫學儀器， 叫做「肺活量計」，

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

用以證明黑人的肺的確比較差。

Today, doctors still uphold Cartwright's claim

如今，醫師仍然 支持卡特賴特的說法，

the black people as a race

即黑人種族比白人肺活量低。

have lower lung capacity than white people.

Some even use a modern day spirometer

有些甚至使用一種現代肺活量計，

that actually has a button labeled "race"

上面竟然有標示「人種」的按鈕，

so the machine adjusts the measurement

能依據病人他或她的人種 而調整其測量。

for each patient according to his or her race.

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

這個著名的功能稱為「人種校正」。

The problem with race medicine extends far beyond misdiagnosing patients.

種族醫學的問題遠超過誤診病人，

Its focus on innate racial differences in disease

它注重疾病上的天生種族差異，

diverts attention and resources

轉移了社會決策者的注意 及可獲得的資源，

from the social determinants

that cause appalling racial gaps in health:

導致在醫療保健上 有極驚人的種族落差：

lack of access to high-quality medical care;

缺乏優質醫療照護、

food deserts in poor neighborhoods;

貧民區食物缺乏、

exposure to environmental toxins;

暴露於環境毒素、

high rates of incarceration;

監禁率高、

and experiencing the stress of racial discrimination.

以及承受種族歧視的壓力。

You see, race is not a biological category

你瞧！人種不是一種生物類別，

that naturally produces these health disparities

不會因基因不同 而導致健康上的差異。

because of genetic difference.

Race is a social category

人種是一種社會分類，

that has staggering biological consequences,

它已很嚴重地影響生物的後果，

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

只因為人民 醫療保健不均等的衝突所導致，

Yet race medicine pretends the answer to these gaps in health

種族醫學仍然假裝 醫療保健的落差

can be found in a race-specific pill.

可以利用種族特定用藥得到解決。

It's much easier and more lucrative

去銷售技術性修正 以解決醫療保健落差，

to market a technological fix

for these gaps in health

than to deal with the structural inequities that produce them.

比去處理製造落差的不均等架構， 更是簡單且有利可圖。

The reason I'm so passionate about ending race medicine

我熱衷於終止這種族醫學的原因

isn't just because it's bad medicine.

不只是因為它是個不好的醫學，

I'm also on this mission

我也有這個使命，

because the way doctors practice medicine

因為醫生執業行醫的方式

continues to promote a false and toxic view of humanity.

一直在助長 對人類錯誤及毒害的看法。

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

儘管我們在醫學上 已有許多前瞻性的突破，

there's a failure of imagination

但在人種方面仍是個失敗的想像。

when it comes to race.

Would you imagine with me, just a moment:

請和我一起想像一會兒：

What would happen if doctors stopped treating patients by race?

如果醫生不再依人種來對待病患， 你想將會怎麼樣？

Suppose they rejected

假使他們拒絕使用

an 18th-century classification system

18 世紀的分類系統，

and incorporated instead the most advanced knowledge

而是加入最先進的知識──

of human genetic diversity and unity,

──人類基因多樣化及獨特性，

that human beings cannot be categorized into biological races?

人是不能分類為生物人種， 你想將怎麼樣？

What if, instead of using race as a crude proxy

如果不用人種作為粗略的替代法

for some more important factor,

來處理一些比較重要因素，

doctors actually investigated and addressed that more important factor?

而是醫生真正去追查和注意 那更重要的因素，你覺得呢？

What if doctors joined the forefront

如果醫生加入活動的最前線，

of a movement to end the structural inequities

來終止這因為種族偏見而非基因差異 所導致的不均等架構，你想會怎樣？

caused by racism,

not by genetic difference?

Race medicine is bad medicine,

種族醫學是有害的醫學，

it's poor science

它是劣質科學，

and it's a false interpretation of humanity.

它是一種對人類錯誤的詮釋。

It is more urgent than ever

現在比以前更加刻不容緩

to finally abandon this backward legacy

須徹底停止這個落伍傳統， 藉著終結

and to affirm our common humanity

這真正分裂我們的社會不平等， 來肯定我們共同的人性。

by ending the social inequalities that truly divide us.

Thank you.

謝謝！

(Applause)

（掌聲）

Thank you. Thanks.

謝謝！謝謝！

Thank you.

謝謝！