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Journal ArticleDOI

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

TL;DR: 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.

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Citations
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Journal ArticleDOI
01 Aug 2019-PLOS ONE
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.
Abstract: The purpose of this study was to investigate the association between gender and primary open-angle glaucoma (POAG) among African Americans and to assess demographic, systemic, and behavioral factors that may contribute to differences between genders. The Primary Open-Angle African American Glaucoma Genetics (POAAGG) study had a case-control design and included African Americans 35 years and older, recruited from the greater Philadelphia, Pennsylvania. Diagnosis of POAG was based on evidence of both glaucomatous optic nerve damage and characteristic visual field loss. Demographic and behavioral information, history of systemic diseases and anthropometric measurements were obtained at study enrollment. Gender differences in risk of POAG were examined using multivariate logistic regression. A total of 2,290 POAG cases and 2,538 controls were included in the study. The percentage of men among cases was higher than among controls (38.6% vs 30.3%, P<0.001). The subjects' mean age at enrollment was significantly higher for cases compared to controls (70.2±11.3 vs. 61.6±11.8 years, P<0.003). Cases had lower rates of diabetes (40% vs. 46%, P<0.001), higher rates of systemic hypertension (80% vs. 72%, P<0.001), and lower body mass index (BMI) (29.7±6.7 vs. 31.9±7.4, P<0.001) than controls. In the final multivariable model, male gender was significantly associated with POAG risk (OR, 1.64; 95% CI, 1.44-1.87; P<0.001), after adjusting for age, systemic hypertension, diabetes, and BMI. Within the POAAGG study, men were at higher risk of having POAG than women. Pending genetic results from this study will be used to better understand the underlying genetic variations that may account for these differences.

31 citations

Journal ArticleDOI
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.
Abstract: The underrepresentation of African American (AA) participants in medical research perpetuates racial health disparities in the United States. Open-ended phone interviews were conducted with 50 AA adults from Philadelphia who had previously participated in a genetic study of glaucoma that included complimentary ophthalmic screenings. Recruitment for the genetic study was done in partnership with a Black-owned radio station. Thematic analysis of interview transcripts, guided by the integrated behavior model (IBM), identified self-reported motivations for participating in this care-focused and community-promoted research program. Findings revealed that decisions to enroll were influenced by strong instrumental attitudes regarding learning more about personal health and contributing to future care options for others. Notable normative influences that factored into participants' decisions to enroll in the study included hearing about the study from a respected community media outlet, friends, and family. About one-third of respondents discussed past and current racial discrimination in medical research as an important sociocultural frame within which they thought about participation, suggesting that experiential attitudes play a continuing role in AA's decisions to enroll in medical research studies. Medical researchers seeking to recruit AA participants should collaborate with community partners, combine enrollment opportunities with access to health services, and emphasize the potential for new research to mitigate racial inequalities.

10 citations

Journal ArticleDOI
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.
Abstract: Minorities are underrepresented in genetic research. This study examined the attitudes, experiences, and willingness of persons of African descent related to participation in genetic research. A total of 272 persons of African descent completed a questionnaire about attitudes and experiences associated with genetic research. Descriptive, Chi-square, and logistic regression were used to examine the impact of attitudes and experiences in predicting the odds of willingness to participate in genetic research. A majority of participants (97%) indicated that they have never participated in genetic research; however, a majority also reported that they would be willing to participate in a genetic study specifically for the detection of risk factors for cancer (87%), diabetes (89%), alcohol use disorder (73%), and Alzheimer’s disease (88%). Participants who disagreed that “results from genetic research can explain why some diseases are found more often in some ethnic groups than others” were less likely to be willing to participate in studies related to cancer (OR = 0.16), diabetes (OR = .16), alcohol use disorder (OR = 0.27), and Alzheimer’s disease (OR = 0.27). Participants reported limited experiences engaging in genetic research; yet, they 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. Further research on the underlying reasons why persons of African descent choose to participate in genetic research should be explored and addressed to make research more inclusive and ethically sound.

4 citations

Journal ArticleDOI
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.
Abstract: Latinx populations are underrepresented in DNA-based research, and risk not benefiting from research if underrepresentation continues. Latinx populations are heterogenous; reflect complex social, migration, and colonial histories; and form strong global diasporas. We 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. Participants in the global study identified as Latinx (n=250) were classified as the following: (1) born/live outside of Latin America and the Caribbean (LAC), (2) born within/live outside LAC, and (3) born/live within LAC. Latinx were similarly likely to indicated they would participate DNA-based research as their non-Latinx counterparts (52.8% vs. 56.2%, respectively). Latinx born and living in LAC were significantly more willing to participate in DNA-based research than Latinx born and living outside of LAC (OR: 2.5; 95% CI: 1.3, 4.9, p<.01). Latinx indicating they would participate in genetic research were more likely to trust researchers (<.05), believe genetic research could lead to better understanding of disease (<.05), and that genetic research could lead to new treatments (p<.05) when compared with Latinx not interested in participating in genetic research. In summary, significant variation exists in genetic research interest among Latinx based on where they were born and live, suggesting that this context itself independently influences decisions about participation. Cultivating and investing in a research ecosystem that addresses, values, and respects Latinx priorities, circumstances, and researchers would likely increase research participation and, even more importantly, potentially impact the inequitable health disparities disproportionately represented in Latinx communities.

3 citations

References
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Journal ArticleDOI
TL;DR: Almost all interracial encounters are prone to microaggressions; this article uses the White counselor--client of color counseling dyad to illustrate how they impair the development of a therapeutic alliance.
Abstract: Racial microaggressions are brief and commonplace daily verbal, behavioral, or environmental indignities, whether intentional or unintentional, that communicate hostile, derogatory, or negative racial slights and insults toward people of color. Perpetrators of microaggressions are often unaware that they engage in such communications when they interact with racial/ethnic minorities. A taxonomy of racial microaggressions in everyday life was created through a review of the social psychological literature on aversive racism, from formulations regarding the manifestation and impact of everyday racism, and from reading numerous personal narratives of counselors (both White and those of color) on their racial/cultural awakening. Microaggressions seem to appear in three forms: microassault, microinsult, and microinvalidation. Almost all interracial encounters are prone to microaggressions; this article uses the White counselor--client of color counseling dyad to illustrate how they impair the development of a therapeutic alliance. Suggestions regarding education and training and research in the helping professions are discussed.

3,916 citations


"Factors associated with participati..." refers background in this paper

  • ...We believe it is unlikely that unintentional microaggression towards African Americans (Sue et al. 2007) played a role; the study team took great care to hire culturally sensitive CRCs of diverse backgrounds and monthly enrollment averages of 10 CRCs over the past 18 months did not differ among…...

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Journal ArticleDOI
TL;DR: Improvements in therapy consist of more effective and better-tolerated drugs to lower intraocular pressure, and more effective surgical procedures to directly treat and protect the retinal ganglion cells that are damaged in glaucoma.

1,843 citations

Journal ArticleDOI
TL;DR: This paper places the syphilis study within a broader historical and social context to demonstrate that several factors have influenced--and continue to influence--African American's attitudes toward the biomedical community.
Abstract: The Tuskegee Syphilis Study continues to cast its long shadow on the contemporary relationship between African Americans and the biomedical community. Numerous reports have argued that the Tuskegee Syphilis Study is the most important reason why many African Americans distrust the institutions of medicine and public health. Such an interpretation neglects a critical historical point: the mistrust predated public revelations about the Tuskegee study. This paper places the syphilis study within a broader historical and social context to demonstrate that several factors have influenced--and continue to influence--African American's attitudes toward the biomedical community.

1,137 citations


"Factors associated with participati..." refers background in this paper

  • ...Some suggest that African Americans are less willing than other races to join research studies primarily due to past abuses such as the Tuskegee Syphilis Study (Gamble 1997; Reverby 2001; Suite et al. 2007; Rencher and Wolf 2013)....

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Journal ArticleDOI
TL;DR: This work characterized the current state of this literature, discussing implications for future research needs and directions, and identified 95 studies published between January 1999 and April 2005 describing methods of increasing minority enrollment and retention in research studies.
Abstract: ▪ Abstract Our ability, as leaders in public health scholarship and practice, to achieve and measure progress in addressing racial/ethnic disparities in health status and health care is severely constrained by low levels of participation of racial/ethnic minority populations in health-related research. Confining our review to those minority groups federally defined as underrepresented (African Americans/blacks, Latinos/Hispanics, and Native Americans/American Indians), we identified 95 studies published between January 1999 and April 2005 describing methods of increasing minority enrollment and retention in research studies, more than three times the average annual output of scholarly work in this area during the prior 15-year period. Ten themes emerged from the 75 studies that were primarily descriptive. The remaining 20 studies, which directly analyzed the efficacy or effectiveness of recruitment/retention strategies, were examined in detail and provided useful insights related to four of the ten factor...

1,098 citations


"Factors associated with participati..." refers background in this paper

  • ...African American churches and rolemodels havebeen shown to be essential to the recruitment of this population (Frew et al. 2008, 2015; Langford, Resnicow, and Beasley 2015) and outreach is particularly important for study retention (Yancey, Ortega, and Kumanyika 2006)....

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Journal ArticleDOI
TL;DR: African-American participants in this study described distrust of the medical community as a prominent barrier to participation in clinical research.
Abstract: OBJECTIVE: To describe barriers to participation of African Americans in research. DESIGN: Focus group interviews conducted in 1997. PATIENTS: Thirty-three African-American adults presenting to an urban public hospital for outpatient medical care participated in one of five focus groups. MEASUREMENTS AND MAIN RESULTS: African-American patients' attitudes toward medical research were measured. Mistrust of doctors, scientists, and the government was reported consistently by the participants. Many participants described concerns about the ethical conduct of clinicians and investigators when poor or minority patients are involved and cited examples of exploitation as supporting evidence for their mistrust of the medical establishment. While participants were clear about the violation of human rights in the Tuskegee Syphilis Study, all were misinformed of the historical facts of the study. Few participants understood the concept of informed consent. Participants saw signing the document as relinquishing their autonomy and as a legal protection for physicians. Despite these concerns, participants gave recommendations to improve minority participation in research. CONCLUSIONS: African-American participants in this study described distrust of the medical community as a prominent barrier to participation in clinical research. Participants described real and perceived examples of exploitation to support their distrust of researchers. The goal of the consent process, to inform patients of risks and benefits so as to facilitate self-determination, was misinterpreted by these participants. Understanding the importance of interpersonal trust within the clinical relationship may prove to be a significant factor in enhancing participation in clinical trials.

994 citations


"Factors associated with participati..." refers result in this paper

  • ...Other non-genetic studies, however, reported positive associations between higher educational attainment and enrollment (Harris et al. 1996; Corbie-Smith et al. 1999; O’Malley et al. 2005; Blumenthal et al. 2010) and both higher (Sengupta et al. 2000; Advani et al. 2003) and lower (Gorelick et al.…...

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