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Background
Genomic research advances the understanding of human health and disease. It also drives both the discovery of salient genetic association(s) as well as targeted screening, diagnostic and therapeutic strategies. Human subject participation is crucial for the success of genomic research.
Methods
This is a cross sectional analytical study conducted at two tertiary centers in Enugu Southeast Nigeria. Semi structured questionnaires were administered to eligible consenting participants. Data on their demographics, willingness to participate in genomic research and motivation for participation were obtained. Data was analyzed using Stata version 17 and summarized using median, frequencies and interquartile range(IQR). Associations between covariates were evaluated with Chi square test and multivariable logistic regression.
Results
Among 228 glaucoma subjects who participated in our study,119(52.2%) were female and 109(47.8%) were male. The median age was 64 years(IQR = 50–76). Although 219 (96.0%) participants expressed willingness to participate in a glaucoma genetic study, only 27(11.9%) of them will be willing to participate if there will not be feedback of results to participants (χ2 = 18.59, P<0.001). No participant expressed willingness to submit ocular tissue samples. Majority (96.2%) of subjects will not participate if the intended research required submission of body samples after death. Desire to know more about glaucoma (63%) was the most common reason for participation. In a multivariable logistic model, subjects between 61–90 years (p = 0.004, OR = 7.2) were 7 times more likely to express willingness to participate in glaucoma genetic research after adjusting for other covariates when compared to subjects aged 41–60 years. Other covariates did not influence participants’ willingness.
Conclusion
Glaucoma subjects are more likely to be willing to participate in genetic research, if they would receive feedback of results. Willingness to participate in genetic research is significantly associated with age.
Limitations
We did not evaluate the salient options for feedback of results to participants in our study.