中低收入国家的自闭症生物医学研究:南非的考虑因素。

IF 0.9 3区 哲学 Q3 ETHICS Developing World Bioethics Pub Date : 2024-02-26 DOI:10.1111/dewb.12446
Siobhan de Lange, Dee Muller, Chloe Dafkin
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引用次数: 0

摘要

自闭症谱系障碍(ASD)是一种以社交/沟通障碍和顽固行为为特征的神经发育疾病。虽然有关自闭症的研究近来蓬勃发展,但在非西方环境下对该疾病进行的研究却很少。在低收入和中等收入国家(LMICs),需要对自闭症进行生物医学研究,以更好地了解人群的需求,并制定适合当地情况的干预措施。然而,自闭症患者是一个易受伤害的研究群体,而中低收入国家又有各种不同的考虑因素。虽然自闭症的表现形式多种多样,但污名化是影响研究的常见社会后果。本文以南非的具体情况为背景,讨论了这些问题的伦理交叉点以及当前知情同意程序的局限性。建议将社区参与作为知情同意的辅助手段,以确保以更具包容性的方式开展生物医学研究。本文还提供了一些实用指南,以便为在开展生物医学研究的同时进行社区参与提供系统支持。
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Biomedical research on autism in low- and middle-income countries: Considerations from the South African context.

Autism Spectrum Disorder (ASD) is a neurodevelopmental condition characterized by social/communicative difficulties and perseverative behaviours. While research on autism has flourished recently, few studies have been conducted on the disorder in non-Western contexts. In low- and middle-income countries (LMICs), biomedical research on autism is required to better understand the needs of the population and to develop contextually appropriate interventions. However, autistic individuals are a vulnerable study population and LMICs present with various considerations. While the presentation of autism is heterogeneous, stigma is a common social consequence affecting research. Drawing specifically on the South African context, the ethical intersections of these issues are discussed, along with the limitations of the current informed consent process. Community engagement is recommended as an adjunct to informed consent to ensure that biomedical research is conducted in a more inclusive way. Practical pointers are provided for implementing systematic support for conducting community engagement alongside biomedical research.

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来源期刊
Developing World Bioethics
Developing World Bioethics 医学-医学:伦理
CiteScore
4.50
自引率
4.50%
发文量
48
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.
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