Ugly History: The U.S. Syphilis Experiment - Susan M. Reverby

譯者: Lilian Chiu 審譯者: Amanda Zhu

In the 1930s, the United States was ravaged by syphilis.

1930 年代，美國境內梅毒肆虐。

This sexually transmitted infection afflicted nearly 1 in 10 Americans,

透過性行為傳播， 近十分之一的美國人被感染，

producing painful sores and rashes that persisted for roughly two years.

感染後會產生持續約兩年的 疼痛的潰瘍和疹子。

After these initial symptoms, late-stage syphilis was known to cause organ damage,

在這些初期症狀之後， 梅毒後期還會造成器官損傷、

heart and brain disorders, and even blindness.

心臟及腦部疾病，甚至失明。

It was incredibly difficult to slow the disease’s spread.

當時很難減緩梅毒的傳播。

Experts cautioned against unprotected sex,

專家警告性行為要做好保護，

but the infection could also be passed during childbirth.

但產婦也可能把感染傳給孩子。

Worse still, existing treatments like mercury and bismuth

更糟的是，既有的治療方法， 如比使用汞和鉍，

were considered unreliable at best and potentially harmful at worst.

不只是不可靠而已， 最糟的狀況則可能造成傷害。

Today these heavy metals are classified as toxic,

現今，這些重金屬 被歸類為有毒物質，

but at the time, doctors were still uncovering their dangerous side effects.

但在當時，醫生都還在探究 它們的危險副作用。

Amidst the uncertainty, health care professionals had two key questions.

在這不確定性中， 醫護專業人員有兩個關鍵問題。

Did late-stage syphilis warrant the risks of existing treatments?

晚期梅毒就是冒險使用 既有治療方式的正當理由嗎？

And, did the infected individual’s race change how the disease progressed?

以及，疾病在體內的發展 是否因種族而異？

Many physicians were convinced syphilis affected

許多醫生相信，

梅毒會影響白人的神經系統

the neurological systems of white patients

and the cardiovascular systems of Black patients.

以及黑人的心血管系統。

There was little evidence for this theory,

這個理論的證據很少，

but the U.S. Public Health Service was determined to investigate further.

但美國的公共衛生局 決心要進一步調查。

In 1932 they launched a massive experiment in Tuskegee, Alabama.

一九三二年，他們在阿拉巴馬州 塔斯基吉啟動了一項大型實驗。

The town had already possessed a small hospital,

該鎮已經有一間小醫院，

and the area was home to a large population of potential participants.

且這個地區的居民中 有許多都有可能成為受試者。

The PHS collaborated with local doctors and nurses

公共衛生局和當地 醫生及護理師合作，

to recruit roughly 400 Black men presumed to have noncontagious late-stage syphilis,

招募了約四百名被認為是無傳染力的 晚期梅毒的黑種病人，

as well as 200 non-syphilitic Black men for their control group.

另以兩百名未感染梅毒的 黑人作為控制組。

But their recruitment plan centered on a lie.

但他們的招募計畫 卻是建構在謊言上。

While the researchers planned to observe how syphilis

研究者的規劃是要觀察在最少 治療的情況下梅毒會如何發展，

would progress with minimal treatment,

participants were told they would receive free drugs and care for their condition.

但卻告知受試者，他們能得到 治療該疾病的免費藥品和照護。

At first, researchers gave the men existing treatments,

一開始，研究者用既有的方式 來治療予受試者，

but these were soon replaced with placebos.

但很快就用安慰劑來取代。

Under the false pretense of providing a special remedy,

假藉提供特殊療法的名義，

researchers performed painful and invasive spinal taps

研究者開始進行痛苦 且侵入性的脊椎穿刺，

to investigate the disease’s neurological consequences.

來研究梅毒對神經系統有什麼影響。

When patients died, the PHS would swoop in to study the body

當病人死亡時，公共衛生局 立刻前來研究屍體，

by funding funerals in exchange for autopsies.

以資助葬禮的方式來交換解剖。

In their published studies, they listed the men as volunteers

在刊載出來的研究中， 這些人被列為自願者，

to obscure the circumstances under which they’d been recruited.

以掩飾招募他們時的實際情況。

Outside Alabama, syphilis treatment was advancing.

在阿拉巴馬以外的地方， 梅毒的治療正在進步。

A decade after the study began,

此研究開始後十年，

clinical trials confirmed that penicillin effectively cured the disease

臨床實驗證實了在梅毒前期，

in its early stages.

盤尼西林的治療很有效。

But in Tuskegee, researchers were determined to keep pursuing

但在塔斯基吉， 研究者堅決要繼續進行

what they considered vital research.

他們認為十分重要的研究。

They had yet to confirm their theories about racial difference,

他們關於種族差異的理論 尚未得到證實，

and they believed they would never have another opportunity

且他們相信他們不會再有其他機會

to observe the long-term effects of untreated syphilis.

可以觀察到梅毒若未治療， 會有什麼長期影響。

The study’s leadership decided to withhold knowledge of new treatments

研究的領導階層決定向受試者 隱瞞新治療方式的資訊。

from their subjects.

During World War II, researchers convinced the local draft board

第二次世界大戰期間， 研究者說服當地的兵役委員會

to exempt men from their study,

豁免參與研究的受試者，

preventing them from enlisting and potentially accessing penicillin.

避免他們入伍時 有機會取得盤尼西林。

The study even continued through the 1950s

1950 年間，已證實盤尼西林 有助於治療晚期梅毒，

when penicillin was shown to help manage late-stage syphilis.

該研究卻仍然持續進行。

By today’s bioethical standards,

以現今的生物倫理標準來看，

withholding treatment in a research study without a patient’s informed consent

在研究中，在沒有病人 知情同意的情況下

不讓病人接受治療， 在道德上十分令人深惡痛絕。

is morally abhorrent.

But for a large part of the 20th century, this practice was not uncommon.

但在二十世紀的大半， 這種做法並不罕見。

In the 1940s, US led studies in Guatemala infected

1940 年代，美國 在瓜地馬拉進行研究，

numerous prisoners, sex workers, soldiers, and mental health patients

刻意讓許多囚犯、性工作者、士兵， 及患有精神疾病者受到性病感染，

with sexually transmitted infections to study potential treatments.

以便研究可能的治療方式。

And other studies throughout the 50s and 60s

在五零和六零年代的其他研究中，

saw doctors secretly infecting patients with viral hepatitis or even cancer cells.

也可以發現有醫生偷偷讓病人 感染病毒性肝炎或甚至癌症。

Eventually, researchers began objecting to these unjust experiments.

最終，研究者開始反對 這些不公義的實驗。

In the late 1960s, an STI contact tracer named Peter Buxtun

1960 年代末，進行 性病接觸者追蹤的彼得布克斯頓

convinced the PHS to consider ending the study.

說服了公共衛生局終止研究。

But after leadership decided against it, Buxtun sent his concerns to the press.

領導階層決定不接受之後， 布克斯頓把他的擔憂告訴媒體。

In July of 1972, an exposé of the Tuskegee study made headlines across the country.

一九七二年七月，

塔斯基吉研究被揭發， 上了全國的頭條。

Following public outcry, a federal investigation, and a lawsuit,

在大眾強烈抗議、聯邦調查，

以及法律訴訟之後， 該研究終於在一九七二年終止——

the study was finally shut down in 1972— 40 years after it began

已是研究開始的四十年之後，

and 30 after a treatment for syphilis had been found.

梅毒的治療方式 被發現的三十年之後。

No evidence of any racial difference was discovered.

沒有找到任何證據證明梅毒 會因種族而有不同的表現。

When the study ended, only 74 of the original 600 men were alive.

研究終止時，原本的六百位受試者 只剩下七十四位還活著。

40 of their wives and 19 of their children had contracted syphilis,

他們的家人中有四十位妻子 和十九位孩子染上梅毒，

presumably from their husbands and fathers.

推測都是被他們的丈夫和父親感染。

In the wake of this tragedy, and concerns about similar experiments,

在這場悲劇之後， 出於擔心會有類似的實驗，

Congress passed new regulations for ethical research and informed consent.

國會通過了關於研究倫理 及知情同意的新規定。

But systemic racism continues to permeate medical care and research

但在全美各地，制度性種族主義

仍然持續彌漫在 醫療照護和研究領域中。

throughout the US.

To truly address these issues,

若要真正處理這些議題，

the need for structural change, better access to care,

急需的是結構性的改變、 讓醫療照護資源更容易取得，

and transparency in research remains urgent.

以及研究的透明化。