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15 years ago, I volunteered to participate in a research study
譯者: Ann Chen 審譯者: Regina Chu
that involved a genetic test.
15 年前我志願參加一項有關於
When I arrived at the clinic to be tested,
基因測試的研究調查。
I was handed a questionnaire.
當我到達門診準備接受測試時,
One of the very first questions asked me to check a box for my race:
我拿到一張問卷表。
White, black, Asian, or Native American.
前面幾個問題之一 是要我勾選我的人種:
I wasn't quite sure how to answer the question.
白人、黑人、 亞洲人、美洲原住民。
Was it aimed at measuring the diversity
我不確定該如何回答這問題。
of research participants' social backgrounds?
它是否旨在衡量
In that case, I would answer with my social identity,
測試者社會背景的差異?
and check the box for "black."
如果是那樣, 我就會用我的社會身份回答
But what if the researchers were interested in investigating
並勾選「黑人」。
some association between ancestry and the risk for certain genetic traits?
但如果是研究人員想調查
In that case, wouldn't they want to know something about my ancestry,
世系與某些基因特徵的風險 之關聯性呢?
which is just as much European as African?
如果是那樣,那他們不就是 要知道一些有關我世系的事情,
And how could they make scientific findings about my genes
那既有歐洲的,也有非洲的。
if I put down my social identity as a black woman?
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?
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,
他們告訴我:「別擔心,
I was told, "Don't worry about it,
只要寫下你怎麼認定 你自己就可以。」
just put down however you identify yourself."
所以我勾了「黑人」,
So I check "black,"
但我對這研究結果實在毫無信心,
but I had no confidence in the results of a study
因為它對一個重要變項 處理得這麼不科學。
that treated a critical variable so unscientifically.
這次在基因測試上 使用人種的個人經驗,
That personal experience with the use of race in genetic testing
讓我思考到:
got me thinking:
在醫學還有那些地方是用到人種, 而作出錯誤的生物預測?
Where else in medicine is race used to make false biological predictions?
我發現在整個醫學應用上, 「人種」還涉入頗深的呢。
Well, I found out that race runs deeply throughout all of medical practice.
它也影響醫生的診斷、
It shapes physicians' diagnoses,
測量、治療、
measurements, treatments,
用藥處方、
prescriptions,
甚至疾病的定義都有影響。
even the very definition of diseases.
我發現越多就越覺得不安,
And the more I found out, the more disturbed I became.
像我一樣的社會學家長久以來 闡明種族是一種社會結構。
Sociologists like me have long explained
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,
that race is a social construction.
這是在指隨時間改變 我們所劃分出來的社會群組,
When we identify people as black, white, Asian, Native American, Latina,
而在世界各地劃分法也不同。
we're referring to social groupings
身為一個法律學者,我也研究了
with made up demarcations that have changed over time
立法者──而不是生物學家──
and vary around the world.
如何定義法律上的種族。
As a legal scholar, I've also studied
而這不只是社會學家的觀點而已。
how lawmakers, not biologists,
你記得當人類基因組的圖譜,
have invented the legal definitions of races.
於 2000 年六月 在白宮的典禮被公開時嗎?
And it's not just the view of social scientists.
比爾.克林頓總統著名的宣告:
You remember when the map of the human genome
「我相信從長期 成功地研究人類基因組,
was unveiled at a White House ceremony in June 2000?
所得到的重大事實之一, 在基因方面來說,
President Bill Clinton famously declared,
人類──不分種族──
"I believe one of the great truths
有超過 99.9% 是相同的。」
to emerge from this triumphant expedition
他也許還要再說:
inside the human genome
「少於 1% 的基因差異,
is that in genetic terms,
不會落在人種這個框架裡。」
human beings, regardless of race,
法蘭西斯.柯林斯領導了 「人類基因組計畫」,
are more than 99.9 percent the same."
現為美國國立衛生研究院院長,
And he might have added
響應了克林頓總統:
that that less than one percent of genetic difference
「我今天很高興,
doesn't fall into racial boxes.
因為我們今日所討論的 唯一人種就是人類。」
Francis Collins, who led the Human Genome Project
醫生本應依照實證醫學進行診療,
and now heads NIH,
要求他們參與基因組改革的 呼聲日漸增加,
echoed President Clinton.
但他們遠遠落後停在習慣性 以人種區分來治療病患。
"I am happy that today,
就拿評估
the only race we're talking about is the human race."
腎小球濾過率(GFR)來說,
Doctors are supposed to practice evidence-based medicine,
醫生例行判讀腎小球濾過率
and they're increasingly called to join the genomic revolution.
為重要的腎功能指標, 但依人種而異。
But their habit of treating patients by race lags far behind.
就如你現在看到這張檢驗報告,
Take the estimate
完全相同的肌酸酐數值,
of glomerular filtration rate, or GFR.
也就是肌酸酐在血中濃度,
Doctors routinely interpret GFR,
會自動產生不同的 GFR 預測值,
this important indicator of kidney function, by race.
依病人是否為非裔美國人而定。
As you can see in this lab test,
為什麼呢?
the exact same creatinine level,
他們告訴我這是基於一種假設:
the concentration in the blood of the patient,
非裔美國人比其他人種的 肌肉量較多。
automatically produces a different GFR estimate
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?
depending on whether or not the patient is African-American.
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?
Why?
醫生告訴我, 他們用人種當做一種捷徑,
I've been told it's based on an assumption
對一些比較重要的因素, 它是個粗略簡便的替代法,
that African-Americans have more muscle mass
例如肌肉量、酶的濃度、基因特徵,
than people of other races.
他們時間有限,無法一一去查。
But what sense does it make
但人種是個很不好的替代法,
for a doctor to automatically assume
許多情況下, 人種根本不會增加相關資訊。
I have more muscle mass than that female bodybuilder?
它只會讓人轉移注意力而已。
Wouldn't it be far more accurate and evidence-based
但人種往往會蓋過臨床評估,
to determine the muscle mass of individual patients
醫生因而疏忽病人症狀、
just by looking at them?
家族病史、
Well, doctors tell me they're using race as a shortcut.
病人病史、 病人自己可能有的疾病等,
It's a crude but convenient proxy
這些都比病人的人種更有據可依。
for more important factors, like muscle mass,
人種不能取代這些重要的臨床評估,
enzyme level, genetic traits
否則會犧牲病人的健康。
they just don't have time to look for.
醫生還告訴我,人種只是他們 考量的許多因素之一,
But race is a bad proxy.
還有許多醫學檢驗
In many cases, race adds no relevant information at all.
如同 GFR 一樣
It's just a distraction.
使用人種分類,
But race also tends to overwhelm the clinical measures.
對黑人、白人、亞裔病人 以不同方式處理,
It blinds doctors to patients' symptoms,
只因為他們的種族。
family illnesses,
種族醫學也讓有色病患 特別容易遭到
their history, their own illnesses they might have --
有害的偏見與陳規。
all more evidence-based than the patient's race.
黑人和拉丁美洲病患 幾乎兩倍於白人,
Race can't substitute for these important clinical measures
面對相同疼痛的長骨骨折時, 沒有止痛藥治療;
without sacrificing patient well-being.
因為陳舊觀念認為
Doctors also tell me race is just one of many factors
黑人及棕色皮膚病患較能忍受疼痛、
they take into account,
誇大他們的痛感、
but there are numerous medical tests,
及較傾向於有毒癮。
like the GFR,
美國食品與藥物管理局甚至 許可使用一種特定種族用藥,
that use race categorically
這名叫 BiDil 的藥片
to treat black, white, Asian patients differently
用在治療自稱為非裔美國人的 心臟衰竭患者。
just because of their race.
研發這種藥的心臟科醫師 並沒有考慮人種或基因,
Race medicine also leaves patients of color especially vulnerable
但基於方便商業的理由
to harmful biases and stereotypes.
將此藥銷售給黑人病患。
Black and Latino patients are twice as likely
那時 FDA 同意
to receive no pain medication as whites
製藥公司
for the same painful long bone fractures
做臨床實驗以測其藥效,
because of stereotypes
而對象只用在非裔美國人身上。
that black and brown people feel less pain,
它推斷
exaggerate their pain,
人種可作為一些 未知基因因素的替代項目,
and are predisposed to drug addiction.
這未知因素會 影響心臟病或是對藥的反應。
The Food and Drug Administration has even approved a race-specific medicine.
但想想它傳遞的危險訊息,
It's a pill called BiDil
黑人的身體 是低於標準的(很差的),
to treat heart failure in self-identified African-American patients.
在他們身上試驗的藥物
A cardiologist developed this drug without regard to race or genetics,
並不保證對其他病人也有效。
but it became convenient
最後製藥公司的銷售計劃失敗了。
for commercial reasons
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。
to market the drug to black patients.
一位年長的黑人婦女 在一個社區會議站起來高喊:
The FDA then allowed
「給我白人使用的藥!」
the company, the drug company,
(笑聲)
to test the efficacy in a clinical trial
如果你對特定人種用藥很吃驚,
that only included African-American subjects.
那麼你會更訝異於
It speculated
美國許多醫生 仍在用一種診斷方法,
that race stood in as a proxy for some unknown genetic factor
那是在奴隸時期 一位醫師所制定的更新版本。
that affects heart disease
這診斷方法與 「蓄奴的正當性」有密切關聯。
or response to drugs.
賽繆爾.卡特賴特醫生畢業於
But think about the dangerous message it sent,
賓夕法尼亞大學醫學院。
that black people's bodies are so substandard,
在南北戰爭前, 他執業於美國深南部,
a drug tested in them
他是當時所謂的「黑人醫學」名醫。
is not guaranteed to work in other patients.
他發起了人種疾病的概念,
In the end, the drug company's marketing scheme failed.
也就是不同人種感染的疾病也不同,
For one thing, black patients were understandably wary
連罹患一般疾病也相異。
of using a drug just for black people.
在 1850 年代,卡特賴特辯稱
One elderly black woman stood up in a community meeting and shouted,
基於醫學理由, 奴隷制度對黑人是有利的。
"Give me what the white people are taking!"
他宣稱因為黑人的肺活量比白人低,
(Laughter)
強迫勞動對他們有好處。
And if you find race-specific medicine surprising,
他在醫學雜誌上寫道:
wait until you learn
「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 many doctors in the United States
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。」
still use an updated version
為了支持這理論,卡特賴特協助製造
of a diagnostic tool
一種測量呼吸用的醫學儀器, 叫做「肺活量計」,
that was developed by a physician during the slavery era,
用以證明黑人的肺的確比較差。
a diagnostic tool that is tightly linked
如今,醫師仍然 支持卡特賴特的說法,
to justifications for slavery.
即黑人種族比白人肺活量低。
Dr. Samuel Cartwright graduated
有些甚至使用一種現代肺活量計,
from the University of Pennsylvania Medical School.
上面竟然有標示「人種」的按鈕,
He practiced in the Deep South before the Civil War,
能依據病人他或她的人種 而調整其測量。
and he was a well-known expert on what was then called "Negro medicine."
這個著名的功能稱為「人種校正」。
He promoted the racial concept of disease,
種族醫學的問題遠超過誤診病人,
that people of different races suffer from different diseases
它注重疾病上的天生種族差異,
and experience common diseases differently.
轉移了社會決策者的注意 及可獲得的資源,
Cartwright argued in the 1850s
導致在醫療保健上 有極驚人的種族落差:
that slavery was beneficial for black people
缺乏優質醫療照護、
for medical reasons.
貧民區食物缺乏、
He claimed that because black people have lower lung capacity than whites,
暴露於環境毒素、
forced labor was good for them.
監禁率高、
He wrote in a medical journal,
以及承受種族歧視的壓力。
"It is the red vital blood sent to the brain
你瞧!人種不是一種生物類別,
that liberates their minds when under the white man's control,
不會因基因不同 而導致健康上的差異。
and it is the want of sufficiency of red vital blood
人種是一種社會分類,
that chains their minds to ignorance and barbarism when in freedom."
它已很嚴重地影響生物的後果,
To support this theory, Cartwright helped to perfect
只因為人民 醫療保健不均等的衝突所導致,
a medical device for measuring breathing called the spirometer
種族醫學仍然假裝 醫療保健的落差
to show the presumed deficiency in black people's lungs.
可以利用種族特定用藥得到解決。
Today, doctors still uphold Cartwright's claim
去銷售技術性修正 以解決醫療保健落差,
the black people as a race
比去處理製造落差的不均等架構, 更是簡單且有利可圖。
have lower lung capacity than white people.
我熱衷於終止這種族醫學的原因
Some even use a modern day spirometer
不只是因為它是個不好的醫學,
that actually has a button labeled "race"
我也有這個使命,
so the machine adjusts the measurement
因為醫生執業行醫的方式
for each patient according to his or her race.
一直在助長 對人類錯誤及毒害的看法。
It's a well-known function called "correcting for race."
儘管我們在醫學上 已有許多前瞻性的突破,
The problem with race medicine extends far beyond misdiagnosing patients.
但在人種方面仍是個失敗的想像。
Its focus on innate racial differences in disease
請和我一起想像一會兒:
diverts attention and resources
如果醫生不再依人種來對待病患, 你想將會怎麼樣?
from the social determinants
假使他們拒絕使用
that cause appalling racial gaps in health:
18 世紀的分類系統,
lack of access to high-quality medical care;
而是加入最先進的知識──
food deserts in poor neighborhoods;
──人類基因多樣化及獨特性,
exposure to environmental toxins;
人是不能分類為生物人種, 你想將怎麼樣?
high rates of incarceration;
如果不用人種作為粗略的替代法
and experiencing the stress of racial discrimination.
來處理一些比較重要因素,
You see, race is not a biological category
而是醫生真正去追查和注意 那更重要的因素,你覺得呢?
that naturally produces these health disparities
如果醫生加入活動的最前線,
because of genetic difference.
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?
Race is a social category
種族醫學是有害的醫學,
that has staggering biological consequences,
它是劣質科學,
but because of the impact of social inequality on people's health.
它是一種對人類錯誤的詮釋。
Yet race medicine pretends the answer to these gaps in health
現在比以前更加刻不容緩
can be found in a race-specific pill.
須徹底停止這個落伍傳統, 藉著終結
It's much easier and more lucrative
這真正分裂我們的社會不平等, 來肯定我們共同的人性。
to market a technological fix
謝謝!
for these gaps in health
(掌聲)
than to deal with the structural inequities that produce them.
謝謝!謝謝!
The reason I'm so passionate about ending race medicine
謝謝!
isn't just because it's bad medicine.
I'm also on this mission
because the way doctors practice medicine
continues to promote a false and toxic view of humanity.
Despite the many visionary breakthroughs in medicine we've been learning about,
there's a failure of imagination
when it comes to race.
Would you imagine with me, just a moment:
What would happen if doctors stopped treating patients by race?
Suppose they rejected
an 18th-century classification system
and incorporated instead the most advanced knowledge
of human genetic diversity and unity,
that human beings cannot be categorized into biological races?
What if, instead of using race as a crude proxy
for some more important factor,
doctors actually investigated and addressed that more important factor?
What if doctors joined the forefront
of a movement to end the structural inequities
caused by racism,
not by genetic difference?
Race medicine is bad medicine,
it's poor science
and it's a false interpretation of humanity.
It is more urgent than ever
to finally abandon this backward legacy
and to affirm our common humanity
by ending the social inequalities that truly divide us.
Thank you.
(Applause)
Thank you. Thanks.
Thank you.