Forlini Cynthia
ARC DECRA Research Fellow, Centre for Values, Ethics and the Law in Medicine, The University of Sydney, Sydney, Australia.
J Alzheimers Dis. 2017;59(1):11-12. doi: 10.3233/JAD-170328.
Robillard and Feng highlight incongruence between patient preferences and the procedural aspects of research ethics as they relate to protocols for dementia research. Their findings break ground for a reassessment of how research ethics, researchers, and participants (including patients and caregivers) approach participation in dementia research. However, it is unclear whether patient preferences may also herald a normative gap between how dementia research is being conducted and how it should be done. This response uses one of Robillard and Feng's findings to illustrate how descriptive empirical data might be reinterpreted into normative questions that reframe current practices in the context of dementia research.
罗比拉德和冯强调了患者偏好与痴呆症研究伦理程序方面之间的不一致，这些方面与痴呆症研究方案相关。他们的研究结果为重新评估研究伦理、研究人员以及参与者（包括患者和护理人员）如何参与痴呆症研究开辟了道路。然而，尚不清楚患者偏好是否也预示着痴呆症研究的实际开展方式与应有的开展方式之间存在规范差距。本回应利用罗比拉德和冯的一项研究结果来说明描述性实证数据如何可能被重新解释为规范性问题，从而在痴呆症研究背景下重新构建当前的实践。
