A qualitative study on aspects of consent for genomic research in communities with low literacy
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Date
2020
Authors
Journal Title
Journal ISSN
Volume Title
Publisher
BMC Medical Ethics
Abstract
Background: Low 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.
Methods: Using 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.
Results: Findings 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.
Conclusion: The 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.
Description
Keywords
Informed consent, Comprehension, Low literacy
Citation
Bukini, D., Mbekenga, C., Nkya, S., Purvis, L., McCurdy, S., Parker, M. and Makani, J., 2020. A qualitative study on aspects of consent for genomic research in communities with low literacy. BMC Medical Ethics, 21(1), pp.1-7.