Yakubu Aminu, Adedeji Isaac, Jegede Ayodele, Mendoza-Carvantes Diana, Adebamowo Clement
Dev World Bioeth. 2024 Oct 9. doi: 10.1111/dewb.12465.
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.
我们使用阿克西和奥马利的框架进行了一项范围审查，以确定非洲痴呆症/老年痴呆症相关研究的伦理规范情况。我们从《国际人类研究标准汇编》中获取规范。我们纳入了1997年至2020年间14个国家发布的规范。适用于痴呆症/老年痴呆症研究的规范条款是更广泛的研究子条款的一部分，比如涉及法律上无行为能力者的研究。规范大多要求指定法定授权代表，作为对痴呆症/老年痴呆症患者的主要保护措施。分别只有五个国家和两个国家的规范中提供了支持能力评估和预先指示的条款。没有任何规范将《残疾人权利公约》作为其条款的基础文书引用。总之，非洲专门适用于痴呆症/老年痴呆症患者或其他认知障碍者研究的规范很少，现有规范中的条款大多缺乏实际执行的具体性。
