Understanding and perceptions of inherited eye diseases and attitudes to genetic testing and gene therapy in a primary eye care setting

Abstract

PurposeTo explore the level of understanding and perceptions of inherited eye diseases and attitudes to genetic testing and gene therapy in a primary eye care setting.MethodsThis study was undertaken as a part of an EVER foundation fellowship at the School of Optometry and Vision Sciences, Cardiff University, UK in 2014. Participant groups were surveyed by questionnaire. The groups were: undergraduate students of optometry, primary eye care professionals and the members of general public attending the optometry practice to have a routine eye test or a routine annual follow‐up. Four focus groups were conducted to design the questionnaire. A preliminary study aimed to understand perceptions and to explore the level of knowledge about genetics, inherited eye diseases and gene therapy. A second questionnaire was designed to explore attitudes to genetic testing and gene therapy.ResultsThe majority of participants (82%) perceived genetics as an important science. However, the level of understanding of genetics and inherited eye diseases was relatively low among all groups of participants. Undergraduate students and primary eye care professionals were better informed about inherited eye diseases than the general public (p = 0.001). The majority (80%) across all three groups had a positive attitude to genetic testing and gene therapy. There was a lack of knowledge about the genetic services available among all groups of participants.ConclusionsThis study shows a broadly supportive attitude to genomic medicine among the public albeit a poor level of knowledge of genetics and genetic eye diseases. Improving public awareness and education in inherited eye diseases can improve the utility of genetic testing and therapy.