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协调医学研究、医疗实践和患者世界的规范与价值观——罕见病医学领域循证医学的伦理问题

Coordinating the norms and values of medical research, medical practice and patient worlds-the ethics of evidence based medicine in orphaned fields of medicine.

作者信息

Vos R, Willems D, Houtepen R

机构信息

Health Ethics and Philosophy, Department of Health Care Studies, University of Maastricht, Maastricht, The Netherlands.

出版信息

J Med Ethics. 2004 Apr;30(2):166-70. doi: 10.1136/jme.2003.007153.

Abstract

Evidence based medicine is rightly at the core of current medicine. If patients and society put trust in medical professional competency, and on the basis of that competency delegate all kinds of responsibilities to the medical profession, medical professionals had better make sure their competency is state of the art medical science. What goes for the ethics of clinical trials goes for the ethics of medicine as a whole: anything that is scientifically doubtful is, other things being equal, ethically unacceptable. This particularly applies to so called orphaned fields of medicine, those areas where medical research is weak and diverse, where financial incentives are lacking, and where the evidence regarding the aetiology and treatment of disease is much less clear than in laboratory and hospital based medicine. Examples of such orphaned fields are physiotherapy, psychotherapy, medical psychology, and occupational health, which investigate complex syndromes such as RSI, whiplash, chronic low back pain, and chronic fatigue syndrome. It appears that the primary ethical problem in this context is the lack of attention to the orphaned fields. Although we agree that this issue deserves more attention as a matter of potential injustice, we want to argue that, in order to do justice to the interplay of heterogeneous factors that is so typical of the orphaned fields, other ethical models than justice are required. We propose the coordination model as a window through which to view the important ethical issues which relate to the communication and interaction of scientists, health care workers, and patients.

摘要

循证医学理所当然地处于当前医学的核心位置。如果患者和社会信任医疗专业人员的能力,并基于这种能力将各种责任委托给医疗行业,那么医疗专业人员最好确保他们的能力是最先进的医学科学。临床试验的伦理适用于整个医学伦理:在其他条件相同的情况下,任何科学上存疑的事情在伦理上都是不可接受的。这尤其适用于所谓的医学冷门领域,即那些医学研究薄弱且多样、缺乏经济激励、疾病病因和治疗证据远不如基于实验室和医院的医学明确的领域。这类冷门领域的例子包括物理治疗、心理治疗、医学心理学和职业健康,它们研究诸如重复性劳损、挥鞭样损伤、慢性下背痛和慢性疲劳综合征等复杂综合征。在这种情况下,主要的伦理问题似乎是对冷门领域缺乏关注。尽管我们一致认为,作为一个潜在的不公正问题,这个问题值得更多关注,但我们想指出的是,为了公正地对待冷门领域所特有的异质因素的相互作用,需要采用正义之外的其他伦理模式。我们提出协调模式,作为一个窗口,通过它可以审视与科学家、医护人员和患者的沟通与互动相关的重要伦理问题。

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