為什麼我們應該停止使用麻風這個名詞

 

為什麼我們應該停止使用麻風這個名詞

資料來源:www.thelancet.com/infection Vol 20 August 2020;財團法人台灣紅絲帶基金會編譯

帕特里夏·德普斯(Patricia Deps)和愛麗絲·克魯茲(Alice Cruz)認為,應當廢除麻風分枝桿菌引起的疾病之麻風病名稱,並說「在公眾意像中,它被用作去隱喻所有不純,不道德和可怕的事物」。

他們主張使用1975年在巴西正式採用的葡萄牙語名稱hanseníase「漢森病」(Hansen's disease)。德普斯和克魯茲認為,這種改變有助於在巴西減少一般公眾和醫學專業界的污名化。

與麻風病病患有關的組織渴望著去找到該疾病的替代名稱,以避免歷史上與麻風病名相關令人不愉快的圖像。麻風病的新名稱應該是中性的,並與世界衛生組織關於新疾病命名之最佳執行規範相一致,它並不鼓勵使用人名(或地名)名詞,而更傾向於描述病因或病理的名稱。德達普(Deps)和克魯茲(Cruz)認同這一點,並說「以不具人名或地理區別的名稱或採用正向的用語以取代人名名詞似乎是合理的,但是並未達成共識。」

1879年,格哈德·漢森(Gerhard Hansen)在其醫療照顧過程中不人道地對一名患者進行了實驗。他試圖在患有麻痺型麻風(少菌型麻風病,paucibacillary leprosy)的女性身上誘發結節形式的(贅瘤型,lepromatous)麻風病。儘管經過了抗議,他還是未經其同意使用了曾穿刺過另一例結節型麻風病人贅瘤的鋒利工具刺破了她的結膜。在牧師的協助下,她向醫院的監督委員會投訴,漢森因為對病人造成身體之傷害而被判有罪。他在實驗所在的挪威卑爾根麻風病醫院中失去了醫生的職位,並且必須支付法庭費用,但是他沒有被判入獄。他沒有表示後悔,並說他的行為在科學上是合理的。

羅特伯格(Rotberg)倡導將「漢森病」(Hansen’s disease)一詞用於人類疾病上和漢森分枝桿菌(Mycobacterium hansenii)用於細菌上,略去了漢森曾因犯有不人道人體實驗之判罪記錄。

反映該病的原因和臨床特徵的分枝桿菌神經性皮炎(mycobacterial neurodermatosis)一詞,是50年前所提出的,由於它符合WHO的標準,因此可能被該病之患者和醫學界所偏愛。

從麻風病到改變為漢森氏病,此一名詞的替代,似乎誤導為表彰其透過非人道實驗虐待患者的罪名。所以,中性的詞彙,分枝桿菌神經性皮炎將會是更好的選擇。

 

*辛西婭·露絲·布特林(Cynthia Ruth Butlin),戴安娜·南希(Diana Nancy),約翰娜·洛克伍德(Johanna Lockwood),drbutlin@yahoo.com

英格蘭和威爾斯麻風病協會(CRB),彼得伯勒PE2 5GZ,英國;倫敦衛生與熱帶醫學學院傳染病學系,倫敦,莢國(DNJL)。

 

 

 

 

 

 

 

 

 

 

 

 

 

Why we should stop using the word leprosy

www.thelancet.com/infection Vol 20 August 2020

Patricia Deps and Alice Cruz1 argue that the name leprosy for the disease caused by Mycobacterium leprae should be abolished, saying that “its use as a metaphor for all that is impure, immoral, and dreadful are still prevalent in public imagery”. They advocate using the Portuguese term hanseníase (Hansen’s disease), adopted officially in Brazil in 1975. Deps and Cruz argue that this change has helped reduce stigmatisation in Brazil in both the general public and medical professional community.

Organisations for people with leprosy are keen to find an alternative name for the disease, to avoid the unpleasant imagery historically associated with the word leprosy. A new term for leprosy should be a neutral one in line with WHO’s best practice guidelines for the naming of new diseases, which discourages eponyms, preferring terms describing cause or pathology. Deps and Cruz acknowledge this, saying “Substitution of the eponym for an anonymous or a positive term seems reasonable but is far from the consensus.”

In 1879, Gerhard Hansen unethically experimented on a patient in his care. He attempted to induce a nodular (lepromatous) form of leprosy in a woman with the anaesthetic form of the disease (paucibacillary leprosy). Using a sharp instrument which had been passed through the lepromatous nodule of another case, he pricked her conjunctiva without her consent and despite her protests. Assisted by her pastor, she complained to the hospital’s supervisory board and Hansen was found guilty of causing bodily harm to a patient. He lost his position as a physician at the Bergen Leprosy Hospital, Bergen, Norway, where the experiment had been done, and had to pay the court costs, but he was not jailed. He showed no remorse, saying his behaviour was justified in the cause of science.

Rotberg, who campaigned to use the term Hansen disease for the human disorder and for the bacteria, Mycobacterium hansenii, omits recording that Hansen was found guilty of unethical human

experimentation.

The term mycobacterial neurodermatosis, reflecting the cause and clinical features of the disease, which was suggested 50 years ago, might be preferred by people with the disease and by the medical community because it is in line with WHO criteria.

The change from leprosy to Hansen’s disease substitutes a word representing misconceptions with a term that honours a man guilty of abusing a patient by unethical experimentation. The neutral term

mycobacterial neurodermatosis would be a better choice.

 

*Cynthia Ruth Butlin, Diana Nancy, Johanna Lockwood. drbutlin@yahoo.com

The Leprosy Mission England & Wales, Peterborough PE2 5GZ, UK (CRB); and Department of Infectious Diseases, London School of Hygiene & Tropical Medicine, London, UK (DNJL)