{"title":"研究伦理委员会对参与埃塞俄比亚人类基因组研究的挑战的看法。","authors":"Herani Sahlu Dembu, Hailemichael Getachew, Polly J Price, Jessica Sales, Liya Wassie","doi":"10.1177/15562646251339221","DOIUrl":null,"url":null,"abstract":"<p><p>Human Genomic Research (HGR) has contributed to public health advancement by identifying disease susceptibility and resistance. However, HGR is surrounded by several ethical, legal, and societal concerns. This qualitative research study explored the perspectives of REC members in Ethiopia on the ethical challenges of HGR. Two focus group discussions consisting of nine REC members were conducted on November 24, 2022, and March 22, 2023. A thematic analysis was conducted using MAXQDA Analysis Software. The study highlighted several important ELSIs related to HGR, including the inadequacy of HGR literacy at all levels: research participants, researchers, and RECs; unsatisfactory quality of consent; the vulnerability of HGR participants; and the lack of a legal framework to govern the acquisition, storage, use, and sharing of genomic data. Therefore, improving HGR literacy at all levels and introducing a legal framework to govern the protection of research participants of HGR is urgently needed.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"15562646251339221"},"PeriodicalIF":1.7000,"publicationDate":"2025-05-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Perspectives of Research Ethics Committees on the Challenges of Human Genomic Research Participation in Ethiopia.\",\"authors\":\"Herani Sahlu Dembu, Hailemichael Getachew, Polly J Price, Jessica Sales, Liya Wassie\",\"doi\":\"10.1177/15562646251339221\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>Human Genomic Research (HGR) has contributed to public health advancement by identifying disease susceptibility and resistance. However, HGR is surrounded by several ethical, legal, and societal concerns. This qualitative research study explored the perspectives of REC members in Ethiopia on the ethical challenges of HGR. Two focus group discussions consisting of nine REC members were conducted on November 24, 2022, and March 22, 2023. A thematic analysis was conducted using MAXQDA Analysis Software. The study highlighted several important ELSIs related to HGR, including the inadequacy of HGR literacy at all levels: research participants, researchers, and RECs; unsatisfactory quality of consent; the vulnerability of HGR participants; and the lack of a legal framework to govern the acquisition, storage, use, and sharing of genomic data. Therefore, improving HGR literacy at all levels and introducing a legal framework to govern the protection of research participants of HGR is urgently needed.</p>\",\"PeriodicalId\":50211,\"journal\":{\"name\":\"Journal of Empirical Research on Human Research Ethics\",\"volume\":\" \",\"pages\":\"15562646251339221\"},\"PeriodicalIF\":1.7000,\"publicationDate\":\"2025-05-13\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Empirical Research on Human Research Ethics\",\"FirstCategoryId\":\"98\",\"ListUrlMain\":\"https://doi.org/10.1177/15562646251339221\",\"RegionNum\":4,\"RegionCategory\":\"哲学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"ETHICS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Empirical Research on Human Research Ethics","FirstCategoryId":"98","ListUrlMain":"https://doi.org/10.1177/15562646251339221","RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"ETHICS","Score":null,"Total":0}
Perspectives of Research Ethics Committees on the Challenges of Human Genomic Research Participation in Ethiopia.
Human Genomic Research (HGR) has contributed to public health advancement by identifying disease susceptibility and resistance. However, HGR is surrounded by several ethical, legal, and societal concerns. This qualitative research study explored the perspectives of REC members in Ethiopia on the ethical challenges of HGR. Two focus group discussions consisting of nine REC members were conducted on November 24, 2022, and March 22, 2023. A thematic analysis was conducted using MAXQDA Analysis Software. The study highlighted several important ELSIs related to HGR, including the inadequacy of HGR literacy at all levels: research participants, researchers, and RECs; unsatisfactory quality of consent; the vulnerability of HGR participants; and the lack of a legal framework to govern the acquisition, storage, use, and sharing of genomic data. Therefore, improving HGR literacy at all levels and introducing a legal framework to govern the protection of research participants of HGR is urgently needed.
期刊介绍：
The Journal of Empirical Research on Human Research Ethics (JERHRE) is the only journal in the field of human research ethics dedicated exclusively to empirical research. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. The journal''s distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality double-blind peer-reviewed original articles.
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