Scoping review of the ethical regulations for Alzheimer's Disease and Alzheimer's Disease Related Dementia research in Africa.

IF 0.9 3区哲学 Q3 ETHICS Developing World Bioethics Pub Date : 2024-10-09 DOI:10.1111/dewb.12465

Aminu Yakubu, Isaac Adedeji, Ayodele Jegede, Diana Mendoza-Carvantes, Clement Adebamowo

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Abstract

We conducted a scoping review to ascertain the landscape of ethics regulations for AD/ADRD research in Africa using Arksey and O'Malley's framework. We sourced regulations from the International Compilation of Human Research Standards. We included regulations from 14 countries published between 1997 and 2020. Provisions in the regulations applicable to research in AD/ADRD were part of broader sub-provisions for research such as with persons under legal disability. Regulations mostly required the appointment of Legally Authorised Representatives, as a major protection for persons with AD/ADRD. Provisions supporting capacity assessment and advance directives were only provided in regulations from five and two countries respectively. No regulation cited the Convention on the Rights of Persons with Disabilities as a foundational instrument for its provisions. In conclusion, regulations specifically applicable to research among AD/ADRD or other cognitively impaired persons in Africa are scarce and provisions in existing regulations mostly lack specificity for practical implementation.

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对非洲阿尔茨海默病和阿尔茨海默病相关痴呆症研究伦理法规的范围审查。

我们采用 Arksey 和 O'Malley 的框架进行了一次范围审查，以确定非洲反兴奋剂/反药物滥用研究的伦理法规情况。我们从《国际人类研究标准汇编》中获取了相关法规。我们收录了 14 个国家在 1997 年至 2020 年间发布的法规。法规中适用于反歧视/反残疾研究的条款是更广泛的研究子条款的一部分，例如与法律上残疾的人进行的研究。法规大多要求任命法定授权代表，作为对注意力缺失/注意力缺陷患者的主要保护。只有五个国家和两个国家的条例分别规定了支持能力评估和预先指示的条款。没有一项法规援引《残疾人权利公约》作为其规定的基础文书。总之，专门适用于非洲注意力缺失患者/注意力缺失和行为障碍患者或其他认知障碍患者研究的法规很少，现有法规中的规定大多缺乏实际执行的具体性。

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来源期刊

Developing World Bioethics 医学-医学：伦理

CiteScore

4.50

自引率

4.50%

发文量

审稿时长

>12 weeks

期刊介绍： Developing World Bioethics provides long needed case studies, teaching materials, news in brief, and legal backgrounds to bioethics scholars and students in developing and developed countries alike. This companion journal to Bioethics also features high-quality peer reviewed original articles. It is edited by well-known bioethicists who are working in developing countries, yet it will also be open to contributions and commentary from developed countries'' authors. Developing World Bioethics is the only journal in the field dedicated exclusively to developing countries'' bioethics issues. The journal is an essential resource for all those concerned about bioethical issues in the developing world. Members of Ethics Committees in developing countries will highly value a special section dedicated to their work.