ArticleJournal of empirical research on human research ethics : JERHRE2019
Walking the Tightrope between Study Participant Autonomy and Researcher Integrity: The Case Study of a Research Participant with Alzheimer's Disease Pursuing Euthanasia in Switzerland.
Article in Journal of empirical research on human research ethics : JERHRE, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
6 citing papers in PubMed.
- What medical conditions lead to a request for euthanasia? A rapid scoping review.Health science reports · 2024Article
- Perceptions of the Role of Living Alone in Providing Services to Patients With Cognitive Impairment.JAMA network open · 2023Article
- Addressing Suicide Risk in Patients Living With Dementia During the COVID-19 Pandemic and Beyond.The Gerontologist · 2022Article
- The Living Alone with Cognitive Impairment Project's Policy Advisory Group on Long-Term Services and Supports: Setting a Research Equity Agenda.International journal of environmental research and public health · 2022Article
- Expectations and Concerns of Older Adults With Cognitive Impairment About Their Relationship With Medical Providers: A Call for Therapeutic Alliances.Qualitative health research · 2020Article
- Difficulty and help with activities of daily living among older adults living alone with cognitive impairment.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2020Article
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Authors and funding
5 authors.
Funding
Abstract
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.