Investigation of African Americans’ Opinions and Understanding of Glaucoma Genetics Research

Abstract

Purpose : It is currently unclear whether demographic factors or understanding of genetics research contributes to subjects’ willingness to participate in a genetics research study. This prospective study examined a subset of patients who were approached to enroll in the Primary Open-Angle African American Glaucoma Genetics (POAAGG) study and surveyed their demographic information, understanding of glaucoma and genetics, and opinion on the ethical basis of genetics research.

Methods : The POAAGG study is a 5-year study that investigates the genetic and other risk factors that underlie primary open-angle glaucoma in African Americans. Eligible participants were given a ten-question survey after choosing to enroll or not enroll in the POAAGG study. The survey included questions about demographic information (including age, gender, income, and education level), basic understanding of glaucoma and genetics, and perspectives on the ethical basis of genetics research. A subset of previously enrolled POAAGG subjects was called to answer the survey questions over the phone.

Results : A subset of patients eligible for the POAAGG study were approached and given the 10-question survey. Responses from the surveys were then compiled into an excel sheet and the differences between the two groups were analyzed. We hypothesize that a difference exists between individuals who choose to and choose not to enroll in POAAGG and that these differences may influence their participation in genetics research.

Conclusions : Identifying a difference between subjects who enrolled and did not enroll in POAAGG will help to better understand factors that influence enrollment in this study, which can be extended to other large genetic studies. The findings will also help to identify strategies to increase enrollment, such as more extensive education on genetics research or the disease being studied during subject recruitment.

This is an abstract that was submitted for the 2016 ARVO Annual Meeting, held in Seattle, Wash., May 1-5, 2016.