疾病因果網絡的重構及病人的雙重消失:DDS如何成為臺灣漢生病藥物

作者資訊
洪意凌
國立交通大學通識中心/人文社會學系
  自十九世紀末醫學研究者確認漢生病的病型和自然病程以來,於二十世紀中期開始使用的 diamino-diphenyl sulfone(DDS)是醫生們首次握有的能影響漢生病病程的藥物。本文從醫療工作的社會學(Sociology of Medical Work)觀點,探討這個化學物質如何藉由取得一個社會腳本而成為治療藥物。我利用這一個例子來說明,醫療社群對疾病的了解及實作如何與醫療科技物相互建構。
  本文主要論點是,DDS 成為漢生病治療藥物的過程,同時伴隨著漢生病醫療技術物網絡的重構以及(樂生院院民所經歷的)病人的雙重消失。我檢視 DDS 於台灣開始使用前後的漢生病醫療實作,及這些實作所鑲嵌於其中的台灣醫療脈絡,發現 DDS 所代表的疾病因果論提供了以預防為目的的漢生病醫療技術物網絡一個理論基礎。此外,DDS 也提供了一個組構既有技術物及人員的方式。DDS 使用方便、價格便宜,適合發放給大量患者,因此能配合大眾防治的一套基本結構(infrastructure),包括標準化的皮膚抹片檢查、巡檢隊和地方診所。如此,DDS 串聯起一個以特定疾病因果論為核心的漢生病醫療技術物網絡。這個網絡促成兩個層次上病人的消失。第一,病人作為人的整體消失在醫療世界觀之中。第二,漢生病疾病歷史的消失。在此雙重消失之情形下,病人被外加一個與其疾病歷程並不相符的疾病定義,且被課予對自己疾病的責任。
  本文說明藥物的社會效果:DDS 促使漢生病醫療技術物網絡環繞著特定的疾病因果論而重構,且課予生病的人一個特定的病人角色和義務。正是這個網絡積極向外指認病人,使疾病歷程不符合其疾病觀的病人逐漸消失在網絡之中。
 
Reconstitution of a Disease Causality Network and the Double Disappearance of Patients: How DDS Became a Cure for Hansen’s Disease in Taiwan
  
      Medical researchers identified Hansen’s disease (HD) in the late 19th century, but it wasn’t until the mid-20th century that physicians utilized diamino-diphenyl sulphone (DDS). Drawing on the sociology of medical work, this article discusses how medical communities’ understandings of and practices regarding a disease shaped and were shaped by a medical object. In becoming a cure for HD, DDS facilitated changes to the existing HD medical network and the double disappearance of a group of patients (in particular, the group living in the Losheng Sanatorium). Examining medical practices in the context of Taiwan before and after the introduction of DDS, I found that the disease causality behind the use of DDS provided a way of conceptualizing HD within a prevention framework and a way to reconfigure the medical network’s technologies and personnel. Cheap and easy to use, DDS facilitated the establishment of an infrastructure that included standardized slit skin examinations, prevention outreach, and skin clinics. This network facilitated the disappearance of patients in two senses: patients as persons disappeared from the cosmology of HD medicine, and the history of HD disappeared. Under this double disappearance, patients were assigned a disease category that does not correspond with their experiences and were implicated in their own illness. The paper specifies the social effects of the adoption of DDS by illustrating that it was the same medical network that was reconfigured by DDS that marginalized patients whose experiences deviate from the medical views of the network.
引用: 
《科技、醫療與社會》,第23期,頁017-07,2016年10月出版