Perspective and Experiences of Researchers regarding Informed Consent for Biorepositories in Ethiopia: A Qualitative Study
| dc.contributor.advisor | Belachew,Ayele(Ass.Prof.) | |
| dc.contributor.advisor | Minwuyelet,Lealem(MSc) | |
| dc.contributor.advisor | Solomon,Kalkidan(Ass.Prof.) | |
| dc.contributor.author | Abdella,Siham Mohammed | |
| dc.date.accessioned | 2024-11-28T09:50:36Z | |
| dc.date.available | 2024-11-28T09:50:36Z | |
| dc.date.issued | 2024-07 | |
| dc.description.abstract | Background: Informed consent in biorepository-based research is a highly debated issue in the scientific community. Unlike one-time consent for a specific study, broad consent is required for future use of biospecimens. However, providing sufficient information about future research poses ethical challenges, making informed consent complex. Additionally, the use of complex procedures and terminology can make it difficult for individuals to fully comprehend the scope of their consent. As a result, the question of whether informed consent can be considered valid is a contentious and multifaceted issue. Given the significant increase in genomics and biorepository-based studies in Ethiopia, it is crucial to gain insight into the perspectives and experiences of researchers, sample donors, ethics committees, and other stakeholders involved in biorepositories. Objective: This study aims to explore and understand the perspective and experiences of researchers concerning informed consent for biorepository-based studies in Ethiopia. Methods: A qualitative study was conducted among 15 participants recruited using purposive intensity sampling. Face-to-face and virtual in-depth interviews were conducted with the study participants are well-experienced in biomedical research that involved collecting and storing human biospecimens from Addis Ababa University, College of Health Sciences, Ethiopian Public Health Institute, and Armauer Hansen Research Institute. Data were organized using NVivo version 20 and analyzed thematically. Results: The study reveals that while information is clearly stated on the information sheet, the informed consent process is not flawless, due to complexity of the study, lack of scientific knowledge, traditional beliefs, and communication flaws during information delivery. Moreover, the absence of a standardized informed consent model specifically tailored to genetics and other biorepository-based research emerged as another primary challenge. Conclusion: Overall, the researchers viewed the informed consent paper positively, yet the consent process was perceived negatively due to participants' poor comprehension. This informs the need for testing comprehension levels before obtaining consent. Future multi-site studies shall be conducted to generate evidence on the opinions and experiences of ethics committees, study participants, and other key stakeholders on informed consent for biorepositories. | |
| dc.identifier.uri | https://etd.aau.edu.et/handle/123456789/3702 | |
| dc.language.iso | en_US | |
| dc.publisher | Addis Ababa University | |
| dc.subject | Consent models | |
| dc.subject | Informed consent process | |
| dc.subject | Biorepository | |
| dc.subject | Genetics | |
| dc.subject | Researchers | |
| dc.subject | Ethiopia | |
| dc.title | Perspective and Experiences of Researchers regarding Informed Consent for Biorepositories in Ethiopia: A Qualitative Study | |
| dc.type | Thesis |