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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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 laparoscopic 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 protes

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