Public perceptions of genomic studies and hereditary diseases in Aari community, South Omo Zone, Ethiopia.

Autor:	Tilahun M; Armauer Hansen Research Institute, Addis Ababa, Ethiopia.; Department of Biology, College of Natural and Computational Sciences, Arba Minch University, Arba Minch, Ethiopia., Gebresilase TT; Armauer Hansen Research Institute, Addis Ababa, Ethiopia.; Institute of Biotechnology, Addis Ababa University, Addis Ababa, Ethiopia., Aseffa A; Armauer Hansen Research Institute, Addis Ababa, Ethiopia., Haile K; Armauer Hansen Research Institute, Addis Ababa, Ethiopia., Wogayehu T; Department of Biology, College of Natural and Computational Sciences, Arba Minch University, Arba Minch, Ethiopia., Murale MT; Department of Psychology, Jinka University, Jinka, Ethiopia., Yntiso H; South Aari Woreda Administration, Gazer, South Omo, Ethiopia., Munung NS; Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa., Bobosha K; Armauer Hansen Research Institute, Addis Ababa, Ethiopia., Kaba M; School of Public Health, Addis Ababa University, Addis Ababa, Ethiopia.
Jazyk:	angličtina
Zdroj:	Transactions of the Royal Society of Tropical Medicine and Hygiene [Trans R Soc Trop Med Hyg] 2024 Jan 02; Vol. 118 (1), pp. 51-60.
DOI:	10.1093/trstmh/trad051
Abstrakt:	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. (© The Author(s) 2023. Published by Oxford University Press on behalf of Royal Society of Tropical Medicine and Hygiene.)
Databáze:	MEDLINE
Externí odkaz:	Zobrazit plný text záznamu