Factors associated with participation by African Americans in a study of the genetics of glaucoma.
Rupin N. Parikh,Laura O'Keefe,Rebecca Salowe,Makayla McCoskey,Wei Pan,Prithvi S. Sankar,Eydie Miller-Ellis,Victoria Addis,Amanda Lehman,Maureen G. Maguire,Joan M. O'Brien +10 more
TLDR
To increase participation of African Americans in genetic research studies, efforts should be made to raise comfort with DNA donation.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.read more
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Primary Open-Angle African American Glaucoma Genetics (POAAGG) Study: gender and risk of POAG in African Americans.
Naira Khachatryan,Maxwell Pistilli,Maureen G. Maguire,Rebecca Salowe,Raymond Fertig,Tanisha Moore,Harini V. Gudiseva,Venkata R M Chavali,David W. Collins,Ebenezer Daniel,Windell Murphy,Jeffrey D Henderer,Amanda Lehman,Qi N. Cui,Victoria Addis,Prithvi S. Sankar,Eydie Miller-Ellis,Joan M. O'Brien +17 more
TL;DR: Men were at higher risk of having POAG than women within the POAAGG study, and pending genetic results from this study will be used to better understand the underlying genetic variations that may account for these differences.
Journal ArticleDOI
Learning from Black/African American Participants: Applying the Integrated Behavioral Model to Assess Recruitment Strategies for a Glaucoma Genetic Study.
Ava Kikut,Mohima Sanyal,Marquis Vaughn,Katherine E. Ridley-Merriweather,Katharine J. Head,Rebecca Salowe,Sara Lomax-Reese,Monica Lewis,Ahmara G. Ross,Qi N. Cui,Victoria Addis,Prithvi S. Sankar,Eydie Miller-Ellis,Joan M. O'Brien +13 more
TL;DR: For example, the authors conducted phone interviews with 50 African American adults from Philadelphia who had previously participated in a genetic study of glaucoma that included complimentary ophthalmic screenings.
Journal ArticleDOI
Attitudes and experiences regarding genetic research among persons of African descent
Denise M. Scott,Veronica G. Thomas,Jane Otado,Faun Rockcliffe,Omotomilade Olopoenia,Dietrich Johnson,Shawneequa L. Callier +6 more
TL;DR: People of African descent overwhelmingly acknowledged the importance of genetic research and expressed willingness to participate in multifactorial genetic studies despite concerns about genetic discrimination, stigma, and/or a potentially poor prognosis.
Journal ArticleDOI
Participation in genetic research among Latinx populations by Latin America birth-residency concordance: a global study.
Timothy D. Dye,Zahira Quinones Tavarez,José G. Pérez Ramos,Isabel Diana Fernandez,Carmen Vélez Vega,Denisse Vega Ocasio,Esteban Avendaño,Nancy R. Cardona Cordero,Carmen DiMare Hering,Ann Dozier,Susan W. Groth +10 more
TL;DR: For instance, the authors conducted a global study using a survey tool (Amazon's Mechanical Turk portal) to ascertain willingness to participate in genetic research by Latin America birth-residency concordance.
References
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Journal ArticleDOI
Primary open-angle glaucoma.
Robert N. Weinreb,Christopher Kai-Shun Leung,Jonathan G Crowston,Felipe A. Medeiros,David S. Friedman,Janey L. Wiggs,Keith R Martin +6 more
TL;DR: Primary open-angle glaucoma (POAG) is the most common type and management of POAG includes topical drug therapies and surgery to reduce IOP, although new therapies targeting neuroprotection of RGCs and axonal regeneration are under development.
Journal ArticleDOI
Are racial and ethnic minorities less willing to participate in health research
David Wendler,Raynard Kington,Jennifer H. Madans,Gretchen Van Wye,Heidi Christ-Schmidt,Laura A. Pratt,Otis W. Brawley,Cary P. Gross,Ezekiel J. Emanuel +8 more
TL;DR: These findings, based on the research enrollment decisions of over 70,000 individuals, the vast majority from the US, suggest that racial and ethnic minorities in the US are as willing as non-Hispanic whites to participate in health research.
Book
The African Americans
David Cohen,Charles M. Collins +1 more
TL;DR: The following statistics, taken from various sources, illustrate the extent and serious nature of this disease and its effect on these populations.
Journal ArticleDOI
Why are African Americans under-represented in medical research studies? Impediments to participation.
TL;DR: Well-designed, relevant, ethical research in conjunction with an appreciation of the many barriers to participation are paramount to increasing African American presence in clinical research.
Journal Article
Why African Americans may not be participating in clinical trials.
TL;DR: Four major barriers to participation in clinical trials were identified: lack of awareness about trials, economic factors, communication issues, and mistrust.