Sorbonne University, Paris, France.
National Scientific and Technical Research Council, Buenos Aires, Argentina.
Theor Med Bioeth. 2020 Dec;41(5-6):223-237. doi: 10.1007/s11017-020-09536-7. Epub 2021 Jan 18.
Medical practice is ideally based on robust, relevant research. However, the lack of disease-modifying treatments for Alzheimer's disease has motivated "innovative practice" to improve patients' well-being despite insufficient evidence for the regular use of such interventions in health systems treating millions of patients. Innovative or new non-validated practice poses at least three distinct ethical questions: first, about the responsible application of new non-validated practice to individual patients (clinical ethics); second, about the way in which data from new non-validated practice are communicated via the scientific and lay press (scientific communication ethics); and third, about the prospect of making new non-validated interventions widely available before more definitive testing (public health ethics). We argue that the authors of metabolic enhancement protocols for Alzheimer's disease have overstated the evidence in favor of these interventions within the scientific and lay press, failing to communicate weaknesses in their data and uncertainty about their conclusions. Such unmeasured language may create false hope, cause financial harm, undermine informed consent, and frustrate the production of generalizable knowledge necessary to face the societal problems posed by this devastating disease. We therefore offer more stringent guidelines for responsible innovation in the treatment of Alzheimer's disease.
医学实践理想上应以可靠、相关的研究为基础。然而,由于缺乏阿尔茨海默病的疾病修正治疗方法,因此尽管在治疗数百万名患者的卫生系统中常规使用此类干预措施的证据不足,但“创新实践”还是被用来改善患者的健康状况。创新或未经证实的新实践至少带来三个不同的伦理问题:第一,关于将新的未经证实的实践负责任地应用于个别患者(临床伦理);第二,关于通过科学和大众媒体传达新的未经证实的实践数据的方式(科学传播伦理);第三,关于在更明确的测试之前广泛提供新的未经证实的干预措施的前景(公共卫生伦理)。我们认为,阿尔茨海默病代谢增强方案的作者在科学和大众媒体中夸大了这些干预措施的证据,未能传达其数据的弱点和对其结论的不确定性。这种未测量的语言可能会产生虚假的希望,造成财务损害,破坏知情同意,并阻碍产生必要的可推广知识,以应对这种毁灭性疾病带来的社会问题。因此,我们为阿尔茨海默病的治疗提供了更严格的负责任创新指南。