This article addresses ethical issues in the conduct of ethnographic research with vulnerable study participants, such as individuals with cognitive impairment. Seven ethical issues emerged from this case study, in which a participant diagnosed with Alzheimer's disease wished to pursue euthanasia in Switzerland: (a) How to protect the participant's autonomy while ensuring his decision had not resulted from untreated depression or modifiable social factors; (b) How to interpret self-harm; (c) How to protect the research team members' "mandated reporter" status; (d) How to counteract the attractive qualities of pro-euthanasia videos depicting an easy end to personal suffering; (e) How to find a better alternative to the common practice of reporting self-harm cases to Adult Protective Services and then removing these cases from studies; (f) How to leverage a participant's trust to address these issues; and (g) Whether researchers should do anything further to help address unmet needs in similar situations.

译文

本文针对弱势研究参与者 (例如患有认知障碍的人) 进行人种学研究时的道德问题。这个案例研究中出现了七个伦理问题,其中被诊断患有阿尔茨海默氏病的参与者希望在瑞士寻求安乐死 :( a) 如何保护参与者的自主权,同时确保他的决定不是由未经治疗的抑郁症或可改变的社会因素造成的; (b) 如何解释自我伤害; (c) 如何保护研究小组成员的 “法定记者” 身份; (d) 如何抵消有利于安乐死的视频的吸引力,这些视频描绘了轻松结束个人痛苦; (e) 如何找到一种更好的替代办法,即向成人保护机构报告自残案件,然后将这些案件从研究中删除; (f) 如何利用参与者的信任来解决这些问题; 以及 (g) 研究人员是否应该进一步采取任何措施来帮助解决类似情况下未满足的需求。

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