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

:本文针对具有脆弱性研究参与者(例如认知障碍者)的人种志研究开展过程中的伦理问题。该案例研究提出了七个道德问题,其中被诊断患有阿尔茨海默氏病的参与者希望在瑞士进行安乐死:(a)如何在保护参与者的自主权的同时,确保自己的决定不是由未治疗的抑郁症或可改变的社会因素引起的; (b)如何解释自我伤害; (c)如何保护研究小组成员的“法定报告人”地位; (d)如何抵消安乐死的录像带所具有的引人入胜的品质,这些录像描绘了容易遭受个人痛苦的情况; (e)如何找到一种更好的替代方法来代替向成人保护服务处报告自我伤害案件,然后将这些案件从研究中删除的普遍做法; (f)如何利用参与者的信任来解决这些问题; (g)研究人员是否应采取进一步措施,以解决类似情况下未满足的需求。

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