ArticleBMC medical ethics2020
A qualitative study on aspects of consent for genomic research in communities with low literacy.
Article in BMC medical ethics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 1 of them a synthesis that pooled it.
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Who cites it
16 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Informed consent in genetic and genomic studies in Sub-Saharan Africa: a systematic review of bioethical issues.BMC medical ethics · 2025Pooled it
- Acceptability and effectiveness of a study information video in improving the research consent process for youth: a non-inferiority trial.BMJ global health · 2025Trial
- Ethical Challenges of Obtaining Informed Consent: Qualitative Research on the Perspectives of Tuberculosis Patients Participating in Human Genomic Research in Ethiopia.Developing world bioethics · 2026Article
- "I Know that One Day I Will Be Cured": Perspectives on Acceptability of Curative Therapies for Sickle Cell Disease in Tanzania.Public health genomics · 2026Article
- Community and bioethicists' perspectives on iPSC research with biobanked samples collected using broad consent.Stem cell reports · 2025Review
- Article
- "ItResearch ethics · 2025Article
- Next generation sequencing in dilated cardiomyopathy: utility and challenges in the African context.Frontiers in cardiovascular medicine · 2025Review
- Patients' perceptions and understanding of preoperative informed consent: A qualitative thematic analysis from Tanzania.SAGE open medicine · 2025Article
- Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa.PloS one · 2025Article
- Ethical considerations for genetic research in low-income countries: perceptions of informed consent, data sharing, and expectations in Nicaragua.European journal of human genetics : EJHG · 2024Article
- 'Research ethics · 2024Article
- All you Need is Trust? Public Perspectives on Consenting to Participate in Genomic Research in the Sri Lankan District of Colombo.Asian bioethics review · 2024Article
- Perceptions and beliefs of community gatekeepers about genomic risk information in African cleft research.BMC public health · 2024Article
- Beyond translations, perspectives for researchers to consider to enhance comprehension during consent processes for health research in sub-saharan Africa: a scoping review.BMC medical ethics · 2023Article
- Prevalence of Hemoglobin-S and Baseline Level of Knowledge on Sickle Cell Disease Among Pregnant Women Attending Antenatal Clinics in Dar-Es-Salaam, Tanzania.Frontiers in genetics · 2022Article
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Authors and funding
7 authors.
Funding
Abstract
backgroundLow literacy of study participants in Sub - Saharan Africa has been associated with poor comprehension during the consenting process in research participation. The concerns in comprehension are far greater when consenting to participate in genomic studies due to the complexity of the science involved. While efforts are made to explore possibilities of applying genomic technologies in diseases prevalent in Sub Saharan Africa, we ought to develop methods to improve participants' comprehension for genomic studies. The purpose of this study was to understand different approaches that can be used to seek consent from individuals with low literacy in Sub-Saharan African countries in genomic research to improve comprehension.
methodsUsing qualitative study design, we conducted focus-group discussions, in-depth interviews and participant observations as data collection methods. This study was embedded in a hospital based genomic study on Sickle Cell Disease at Muhimbili National Hospital in Tanzania. Thematic content analysis was used to analyse the transcripts and field notes.
resultsFindings from this study show that literacy level has little influence on understanding the research details. According to the participants of this study, the methods used to provide information, the language, and time spent with the study participants were the key factors influencing understanding. The availability of group sessions held before individual consent to allow for a detailed questions and answers format was agreed to be the best method to facilitate the comprehension.
conclusionThe quality of the consenting process of participants will be influence by a number of factors. The type of research consented for, where the research will be implemented and who are the potential study participants are amongst the factors that need to be assessed during the consenting. Measures to improve participants' comprehension need to be developed when consenting participants with low literacy level in genomic studies.
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