Ethical Issues in Glaucoma Genomic Research: Perspectives and Preferences of Potential Research Participants in Enugu, Southeast Nigeria

Abstract

Genomic research is challenged by many ethical issues, especially in low-resource locations. To determine the views and perspectives of research participants regarding these ethical challenges, two hundred and eight potential research participants were interviewed. Views regarding basic genetic knowledge, return of research results and incidental findings and secondary data use were elicited. Overall, 87.5% of participants were aware of genomic research. About 95.7% of participants had poor basic genetic knowledge, while 15.4% had an understanding of the concept of genetic research. Most participants (92.3% and 82.2% respectively) expressed preference for return of research results and incidental findings. One hundred and forty-nine participants (71.6%) expressed reservation regarding future unspecified use of their blood sample and medical information while 76.4% expressed concern regarding data sharing with other researchers. Optimal consideration should be given to participants' preferences in the design of genomic research protocols.