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迈向以患者为中心的痴呆症风险研究结果反馈:多元、建设性的拓展。

Toward a person-centered return of research results of dementia risk: A pluralistic, constructive expansion.

作者信息

Irfan Bilal, Wiseman Elijah, Boyd J Wesley, Reader Jonathan, Rahman-Filipiak Annalise

机构信息

Center for Bioethics, Harvard Medical School, Boston, MA, USA.

Center for Surgery and Public Health, Brigham and Women's Hospital, Boston, MA, USA.

出版信息

J Alzheimers Dis. 2025 Jul;106(2):540-546. doi: 10.1177/13872877251343319. Epub 2025 Jul 1.

DOI:10.1177/13872877251343319
PMID:40368121
Abstract

Graham et al.'s article offers a thoughtful account of why disclosing modifiable dementia risk factors to cognitively unimpaired research participants may be ethically defensible. In this Ethics Response, we seek to engage constructively with their arguments, affirming value in a person-centered approach, while also expanding on how cultural, communal, and religious contexts can further illuminate the ethics of returning individual research results. Drawing on emerging ethical issues and examples from diverse settings, this response highlights how stigmatization, religious worldviews, family care traditions, and broader socioeconomic factors may influence the perceived meaning and impact of dementia risk communication.

摘要

格雷厄姆等人的文章深入探讨了为何向认知未受损的研究参与者披露可改变的痴呆症风险因素在伦理上可能是合理的。在这篇伦理回应文章中,我们试图与他们的观点进行建设性互动,肯定以个人为中心的方法的价值,同时进一步阐述文化、社区和宗教背景如何能更清晰地阐明反馈个人研究结果的伦理问题。借鉴新出现的伦理问题以及来自不同背景的实例,本回应强调了污名化、宗教世界观、家庭护理传统以及更广泛的社会经济因素可能如何影响痴呆症风险信息传达的感知意义和影响。

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Perceptions about brain health among the United Arab Emirates population using the global brain survey: a cross-sectional study.使用全球脑部调查对阿拉伯联合酋长国人群脑部健康认知的横断面研究。
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Systematic review of what people know about brain health.关于人们对大脑健康了解程度的系统综述。
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Informing cognitively healthy research participants of modifiable dementia risk factors: Ethical implications.
向认知健康的研究参与者告知可改变的痴呆症风险因素:伦理意义。
J Alzheimers Dis. 2024 Dec;102(4):891-896. doi: 10.1177/13872877241292370. Epub 2024 Nov 8.
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Religion and mental health: an Eastern Mediterranean region perspective.宗教与心理健康:东地中海地区视角
Front Psychol. 2024 Aug 7;15:1441560. doi: 10.3389/fpsyg.2024.1441560. eCollection 2024.
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Alzheimer's Disease and Related Dementias in Muslim Women: Recommendations for Culturally Sensitive Care.穆斯林女性的阿尔茨海默病及相关痴呆症:文化敏感护理的建议。
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A Pragmatic, Investigator-Driven Process for Disclosure of Amyloid PET Scan Results to ADNI-4 Research Participants.向ADNI-4研究参与者披露淀粉样蛋白PET扫描结果的实用、研究者驱动的流程。
J Prev Alzheimers Dis. 2024;11(2):294-302. doi: 10.14283/jpad.2024.33.
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The Good, the Bad, and the Ugly of Faith Healers and Psychiatric Illnesses: A Systematic Review of the Literature in the Arab World.信仰疗愈者与精神疾病的好坏与丑陋:阿拉伯世界文献的系统性回顾。
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