Factors associated with participation by African Americans in a study of the genetics of glaucoma

ABSTRACT

Objective: African Americans have been historically underrepresented in research studies. Our aim was to evaluate factors influencing enrollment in the Primary Open-Angle African American Glaucoma Genetics (POAAGG) study.

Design: Patients approached to enroll in the POAAGG study were asked to complete a 15-item survey addressing demographic characteristics, knowledge of genetics and glaucoma, and opinions on human research. Survey responses were compared between subjects who enrolled (Enrollers) and did not enroll (Decliners) in the POAAGG study.

Results: Enrollers (N = 190) were 3.7 years younger (P = 0.007) and had similar gender, education, and income level to Decliners (N = 117). Knowledge about genetics and glaucoma was similar between groups. Enrollers were more comfortable providing DNA for research studies (93.1% vs 54.1%; P < 0.001) and more likely to have participated in prior studies (P = 0.003) and consider participating in future studies (P < 0.001). Among Decliners, lack of time was the primary reason given for not enrolling.

Conclusion: To increase participation of African Americans in genetic research studies, efforts should be made to raise comfort with DNA donation.

KEYWORDS:

• African Americans
• African American recruitment
• African American enrollment
• clinical studies
• genetic studies
• minority research
• glaucoma
• glaucoma genetics

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by National Eye Institute [grant number 1RO1EY023557-01]; The Paul MacKall and Evanina Bell MacKall Trust; F. M. Kirby Foundation; The UPenn Hospital Board of Women Visitors; Research to Prevent Blindness.