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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For example, the activists challenged the methodology inof drug experiments as immoral, and forced scientists to generate some pioneering scientific research methods. 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 scientific 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 hierarchal 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 legal 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. However, 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 gain 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 credibility? 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 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 protest. It is a surprisingly quick response form the government 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 Veterans 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, Nov. 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 uterine 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 Department 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. 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 response 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 also 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, and so on. Again, like most other health-care-related groups, TAPWR used to striveing for legal reforms and de-stigmatization of women with certain medical and health conditions (such as abortion). When TAPWR debates with doctors in some public hearing, TAPWR mostly confronts with their practices and their behaviors toward women seeking medical userscare. However, in 1999, when TAPWR criticized the lagging legalization of RU486,; one of their targets was the way clinical trials were conductedundergone was one of their targets. This is was the first time that TAPWR attacked on the scientific methods itself.Not every attack that TAPWR launches gains that much attention. We have to note that Dr. Lius surgical method has been a controversy controversial among the in medical cyclecircles. Dr. Liu started his experiment since in March 1999. On the Mothers Day of that year, Dr. Liu already wrote an essay regarding the importance of womens womb, and reported his finding of already 16 cases with this new method. United Daily, p. 34, May 5, 1999. This shows his unusual preference of media reports compared to that of most of the other medical doctors. The norm of the science cycle circles is to report a new finding only after it is formally published in academic journals. Similar newspaper reports continued. The glamour of this new method reachesd its highest in October, 2000, when Dr. Liu won the best paper award on in the World Congress of Gynecological Endoscopy. Despite the media glamour of Lius achievement, the medical cycle has circles had some disputes. Some doctors overtly cast suspicion on the long-term effects of such surgery. For example, see United Daily, A4, Jan. 29, 2001. In a weekly meeting of an oby-gyn department that I sat in, some discussion regarding the serious consequences of such surgery were brought up. Most unusually, the Taiwanese Association of Gynecologic and Obstetric Endoscopist (TAGOE) issued a survey of 32 executive directors and supervisors, and some experienced endoscopists, and of whom 90% objected using such surgery as a first line treatment. Although such surgery remains controversial, no specific action was taken to prevent this experiment. When Dr. Liu won another best paper award for from the World Congress of Gynecological Endoscopy in the end of 2001, the international recognition seems seemed to have further glorify glorified and legitimate legitimized Dr. Lius practice. Then, this medical controversy reached to an end when the Department of Health classifiesd it as a human subject experiment, rather than a well-recognized practice. Still, only medical controversy itself would not lead to an end of a dispute. This case echoes what Epstein (1995) observes, that lay people most likely to gain their credibility when the science cycle scientific circles themselvesitself has have disputes. As not attacking colleagues becomes the norm among the medical profession, a woman patients interest becomes legitimate to disclose the dispute. The TAPWR, as a fair third party, representing women medical users care seekers, facilitates its their? credibility. An official request from such NGO gives the main-streamed- medicine-controlled Department of Health, which is controlled by main-stream medicine, legitimacy to solve the dispute. I can imagine that if it is a congress-person member of the Legislative Yuan who holds a media conference, as how the way most medical disputes gets revealed, the dispute would remain stay on the level of media war for a while before reaching the governmental medical ethic committee. It is the timely conjuncture of scientific controversy, the individual womans grievance, and the NGO protest that leads to the quick closure of this medical dispute. II. Criticizing Technology that “Creates” ProblemsIn an “ART (assisted reproductive technologies) counseling in practice” conference held by the Taiwanese Society for Reproductive Medicine (TSRM) in June, 2002, Executive Director Esther Lai of the Premature Baby Foundation of Taiwan (PBFT) co-chaired the conference with Dr.Kuo-Guang Li, the president of TSRM, for a section not clear! what kind of “section”? called “Minimizing the risk of multiple pregnancy.” In a seminar that in which only medical doctors gave lectures, Ms. Lais chairing position seems seemed quite unusual. Lay activists gave advice to doctors doing advanced medical technology and the advice was taken seriously? This shows that the Premature Baby Foundation has made the first success step to advise ob-gyns in Taiwan not to create more disabled premature children. What a breakthrough. While we have entered an age of controlling the quality of fetus through various medical technology, some “imperfect babies” are born because of medical technology as well (Landsman 1998). In-vitro fertilization (IVF) counts one. In 1998, among 2305 live births through IVF in Taiwan, 7.4% were weighed lower than 1500 grams, and 35.8% were between 1500 and 2500 grams, also qualified classified as premature babies. http:/www.doh.gov.tw/newdoh/90-org/org-4/900524-1.htm Most of these under-weight babies were twins and or multiplets. The proportion of IVF babies who are twins, triplets or other multiplets has increasesd from 30% in 1992 to 55% in 1996, two times that of the US. China Times, April 16, 2000. Since ob-gyns in Taiwan usually implant 3 to 5 embryos, such practice leads to this high rate of multiplets. Both women and babies may suffer from multiple pregnancy: Mothers face greater risk of premature labor and pre-eclampsia, abruption, and premature infants face various morbidity (Bronson 1997). It has raised heated Heated discussions were raised by in the leading medical journals like The New England Journal of Medicine and The Lancet, and regarding limiting the number of embryos implantation implanted (e.g.; Templeton and Morris 1998; Ozturk and Templeton 2002). Human Reproduction, one of the leading journals on IVF, even had two sequential debates in 1997 and 1998, involving medical scientists from UK, US and Belgium. Some debating article leading to debates starts hadwith provocative titles like “whos Whos afraid of single embryo transfer?” (Coetsier and Dhont 1998). The UK used to limit three embryos implantation per cycle, and the British Fertility Society further recommendsed in 1998 that “it should be the usual practice to transfer a maximum of two embryos in each treatment cycle” (Murdoch 1998: 2669). As early as in 1991, Germany strictly regulatesd that fertility workers can only fertilize less than three eggs recovered after follicular aspiration (Beier and Beckman 1991). The American Society of Reproductive Medicine offersed a more lenient guideline in 1999,; for example, that if the maternal age is over 40, no more than five embryos could be transferred. http:/www.asrm.org/Media/Practice/practice.html (Guidelines on Number of Embryos Transferred by American Society for Reproductive Medicine) Transferring three to five embryos is the most common practice according to the doctors we visited. A mother in Ping-TungPingtung gave birth to quintuplets after IVF in September, 2000, and the IVF clinic even held a media press for this event, showing they do not see multiple implantation as a controversycontroversial. United Daily, p. 10, September 19, 2000. Interestingly, responding to this unusual event, the doctor from a me