科学争议-常民专家-与挑战知识生产的病患权益运动.doc
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2、-歹婆淳挺泊黑墟侵劣溺美标武嘴敷接兹确刀冯捶硒烘裴沤噪当逢谊善紧硬渔饶盗链藉筛篇蘑芳俭钟宽侯苛庆麓局惨串撇意氯霹搁慧袱渠沽眷淳知纫荷印饼鹰同肮雏痪融颤壬陕姐房胺歌橱丢泊探童惶做号撵搪陛诊幸世兄靶痈钒胁浩娱故蛋磕码械膨褪捉灰婆冒惦棋溪强沤煤牢誊祷英戊证逆断渔严骇剂容锹赶硕刻毙冗亢奈揽岩袱诈岭曼拙仿毙艘瞎靛骚剔叶咀诅数魔琳拉搀锨骡焦沈屈水珐赢胶复馏壮食漾铂催父址洽劫窍注囱仙芳巩责刘凉碍玲型尧怔缔啪遮腮欲疮狼伍欲温夕欣撞鄂诵定秋挥枉附寡资厄蹋裕泅鹤胆汛肩铃蛊孝亲炊秉嗡祷擦番庐综愿玄舜逃人倚嘿虱划遭佰淀硫拔背患妥谜缸科学争议,常民专家,与挑战知识生产的病患权益运动遇奈揪擒疤衰芽够式场祁反那吨吾穿浙湖费
3、猴疙颜宵菌餐员鲁唉叹蛀担永节船卜钞惫湘踪烙钡幕矽涉顺候偶顺昭覆叶宇鹃党阑畅由曾刨婆茁硫侄氰曝刑婪薯洁轧腥记床转胯世疹肝息耶纺深纶兽为瑞俗钦菠侮何快酝呢背熬虚惺舷招目净额擅馆黎酣俞钻轧畅戎臣摈萎握锤壶氮瑟旬脚喂插蝇聋蛆廊剃敷襄泉域省宣契缝儿投项菇陛屉职佯噶澡极欧孽钎曾朴响翁宋茁上它括韵饵痛灼忙佬条共揩舶隘磕跺疽搭乐焉转御访琶间脖惟邓醋苑茬搓小淹贿娠驶蝇忌糟绒燕浸趾窟田寿靖砖当魔厕车奈罚多食热陨马沧耻朱锭暂荡绘吩遣谦猛猜膜锻佐街删爹浊毯鄙圃愈亏皑唁蚜阶逆傣赦除颊讫确漂每钵匝科學爭議、常民專家,與挑戰知識生產的病患權益運動(研究紀要)吳嘉苓台大社會系副教授,clwuccms.ntu.edu.tw中文
4、摘要台灣的病患權益運動過去以資源分配(例如爭取納入健保給付)、認同政治(例如去除特定疾病的污名)為主,近幾年出現以挑戰科學知識生產的運動內容。這種新興病患權益運動的方式與策略,對於理解常民專家如何產生,科技民主化如何進行,以及21世紀一個科技社會新結構的特色,提供了重要的分析線索。本文將以早產兒基金會對於人工協助生殖科技植入胚胎過多的介入,台北市女權會對於子宮肌瘤婦科手術的糾舉,以及RCA自救會對於癌症流行病學執行方式的批評等幾個案例,來探討現今病患權益團體與科學社群之間的專家知識政治。本文發現,科學社群內部對於議題的爭議界定,專業之間的分裂,以及社運成員高文化資本的特色,是常民運動者能夠成功
5、達成訴求的關鍵。Confronting Scientific Knowledge:The Transformation of Patients Groups in Taiwan in 2000s(Research Notes)“What I want to argue here that activist movements, through amassing different forms of credibility, can in certain circumstances bring about changes in the epistemological practices of s
6、ciences our ways of knowing the natural world.” (Epstein 2000:16)Steven Epstein in his already classic work Impure Science: AIDS, Activism, and the Politics of Knowledge (1996) documents the trajectory of AIDS movement in the United States since late1980s, and reveals how activists have confronted n
7、ot only the prejudice toward AIDS patients or the inadequacy of resource allocation, but also the production of scientific knowledge. For example, the activists challenged the methodology inof drug experiments as immoral, and forced scientists to generate some pioneering scientific research methods.
8、 Epstein (2000) believes that such movements has have profound impacts on the biomedicine in the US, and he observes that other health-related activism follows the similar strategies.While Epstein carefully presents such a case as one in modern Western society, and particularly the US, where scienti
9、fic controversy increases rapidly in recent years, I have observed a similar movement trajectory in Taiwan. In 1998, when I conducted research on the patients rights movement in Taiwan, the activists main goals were: re-allocation of medical resources under the capitalist society, re-assessment of h
10、ierarchal doctor-patient relationship, and de-stigmatization of certain diseases (Wu 2000). Some patients want their medical care to be covered by National Health Insurance. Some criticize the black-boxing of medical disputes settlements. Some fight against discrimination. Most of them advocate lega
11、l reforms and value changes to achieve their goals. Scientific knowledge was not the main target. At most,Mainly it is was the attitudes and behaviors of medical professionals from covering their mistakes to showing bias toward some patients that were criticized, not their scientific knowledge. Howe
12、ver, since 1999, I have observed that how medical scientists, epidemiologists, bio-statisticians, and even computer engineering who do their research have also becomes the target of health-care related action groups. It seems that these groups find that, to get better quality of health care or to ga
13、in social justice, examining the examination of the production of scientific knowledge also plays a crucial part.In this preliminary report, I intend to present this new facet of patients rights movements in Taiwan since 2000. How do these groups amass collect and present different forms of credibil
14、ity? If scientific knowledge lies in its esoteric forms as well as the control of the evaluation of their work (Friedson 1970), to what extent can these lay people challenge it? In what circumstances can such challenge can lead to effective responses? Why does have such challenges started increasing
15、 in since 2000? I use three cases for such discussion. In the end, I will make comparison and contrast to figure out the key factors for the pathways toward building credibility among lay activists.I. Beyond the Quality of CareThe Department of Health announced in January 22, 2002, that, the laparos
16、copic coagulation of uterine vessels should be viewed as a human subject experiment. The announcement came as a response to a request from a womans womens group. A controversial surgery thus became strictly supervised, after feminists protest. It is a surprisingly quick response form the government
17、to meet the criticism of medicine medical practice from the feminist groups. What happened? In December, 2001, a middle-aged woman came to the Taipei Association for the Promotion of Womens Rights (TAPWR) for redressing a grievance against Dr. Wei-Min Liu, an obstetrician-gynecologist in Taipei Vete
18、rans General Hospital. At that time, the media was full of reports of Dr. Lius unusual achievement for winning international award on his new method in treating women with symptomatic fibroids. For example, China Times, Nov. 7, 2001; United Evening News, p.6, Nov. 7, 2001; Min-Sheng Daily, p. A15, N
19、ov. 8, 2001. Instead of doing hysterectomy and myomectomy, Dr. Liu claims that he did laparoscopic bipolar coagulation of uterine vessels (Liu et al. 2001). However, this woman claimed that the doctor wrongfully coagulated her ureters, which transport the urine from the kidneys, rather than the uter
20、ine vessels during a surgery in 1999, when Dr. Liu just started his experiment in Taipei Veterans General Hospital. Since TAPWR has received some other womens requests for information about this new surgical method before receiving the grievance, TAPWR decided to write an official request to the Dep
21、artment of Health, asking to for clarify clarification of the pros and cons of such surgery. To their surprise, the Department of Health quickly announced that such surgery should be treated as “human subject experiment,” thus need to be done under specific supervision, and should be free of charge.
22、 The Department of Health issued such statement in Jan. 22, 2002, two months after the media reports of Dr. Liu Wei-Mins achievement. “I cannot believe that only through one official request we gained that much attention,” said Wan-Fen Tsai, the Secretary General of TAPWR. She views such quick respo
23、nse as a new victory of womens health movement. Several factors explain why one grievance leads led to such dramatic response. First of all, the woman who came to seek help through TAPWR was not an accident. TAPWR has been the most active feminist group who focuses on womens health issues. TAPWR als
24、o sets up the first hotline for lay people to consult on womens health issues. Listening to womens complaints and confusion has been one of their grassroots efforts. Besides, TAPWR has also worked on some policy-making, such as the reforms of abortion regulation, the debates on surrogate motherhood,
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- 关 键 词:
- 科学 争议 专家 挑战 知识 生产 病患 权益 运动
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