Background Genetic and genomic research is revolutionizing precision medicine; however, addressing ethical and cultural aspects is crucial to ensure ethical conduct and respect for community values and beliefs. This study explored the beliefs, perceptions and concerns of the Aari community in South Ethiopia regarding genetic concepts, hereditary diseases and ethical research practices related to sample collection, storage and sharing. Methods In-depth interviews and focus group discussions were conducted with community elders, health officials, tuberculosis patients and apparently healthy individuals. Data were thematically analysed using MAXQDA software. Results Participants identified diseases such as podoconiosis, leprosy, goitre and epilepsy as hereditary and perceived some as ‘curses’ due to generational impact and social stigma. Disease susceptibility was attributed to divine intervention or factors such as malnutrition and sanitation. Although hereditary diseases were considered unavoidable, in some cases environmental factors were acknowledged. Participants shared personal examples to demonstrate inheritance concepts. Blood held cultural significance, and concerns about its potential misuse resulted in scepticism towards giving samples. Conclusions This study emphasizes the significance of comprehending local beliefs and perceptions and stresses the need to establish effective communication, build trust and address underlying causes of hesitancy to improve recruitment and ensure ethical conduct.

中文翻译：

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埃塞俄比亚南奥莫地区 Aari 社区的公众对基因组研究和遗传性疾病的看法

背景 遗传和基因组研究正在彻底改变精准医学；然而，解决道德和文化方面的问题对于确保道德行为和尊重社区价值观和信仰至关重要。这项研究探讨了埃塞俄比亚南部 Aari 社区对遗传概念、遗传性疾病以及与样本收集、储存和共享相关的伦理研究实践的信念、看法和担忧。方法对社区老年人、卫生官员、结核病患者和表面健康个体进行深度访谈和焦点小组讨论。使用 MAXQDA 软件对数据进行主题分析。结果 参与者将足部病、麻风病、甲状腺肿和癫痫等疾病视为遗传性疾病，并认为某些疾病是由于代际影响和社会耻辱而造成的“诅咒”。疾病易感性归因于神的干预或营养不良和卫生条件等因素。尽管遗传性疾病被认为是不可避免的，但在某些情况下，环境因素也得到承认。参与者分享个人例子来展示继承概念。血液具有文化意义，对其潜在滥用的担忧导致人们对提供样本持怀疑态度。结论 本研究强调了理解当地信仰和看法的重要性，并强调需要建立有效的沟通、建立信任并解决犹豫的根本原因，以改善招聘并确保道德行为。在某些情况下，环境因素得到承认。参与者分享个人例子来展示继承概念。血液具有文化意义，对其潜在滥用的担忧导致人们对提供样本持怀疑态度。结论 本研究强调了理解当地信仰和看法的重要性，并强调需要建立有效的沟通、建立信任并解决犹豫的根本原因，以改善招聘并确保道德行为。在某些情况下，环境因素得到承认。参与者分享个人例子来展示继承概念。血液具有文化意义，对其潜在滥用的担忧导致人们对提供样本持怀疑态度。结论 本研究强调了理解当地信仰和看法的重要性，并强调需要建立有效的沟通、建立信任并解决犹豫的根本原因，以改善招聘并确保道德行为。