Genetic Testing for the Susceptibility to Alcohol Dependence: Interest and Concerns in an African American Population

Scott, Denise M.; Nwulia, Evaristus; Kwagyan, John; Cain, Gloria; Marshall, Vanessa; Kalu, Nnenna; Ewing, Altovise; Taylor, Robert E.

doi:10.1089/gtmb.2013.0417

Cited by 10 publications

(23 citation statements)

References 33 publications

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“…After identification, the studies were coded and thematically analyzed in an effort to reduce the data into condensed and meaningful categories related to facilitators and perceived barriers of racially/ethnically diverse groups about participation in genetic research studies. Preliminary coding categories were derived from 10 high‐relevance studies (with high relevance defined as studies that addressed alcohol genetic research and/or provided explicit attention to perceptions of racially/ethnically diverse groups as a substantive focus of the article) . The remaining studies were unitized, or divided into meaningful data segments, coded using preliminary code categories, and thematically analyzed.…”

Section: Methodsmentioning

confidence: 99%

“…There is thus a need to understand the barriers and facilitators that Latinos perceive about participation in alcohol genetics research and to create more responsive recruitment and follow‐up efforts based on this knowledge . Moreover, given the paucity of data on the recruitment and participation of Latinos in alcohol research collecting biological samples, an understanding of the extant literature on racial/ethnic minority participation in genetics research would help to provide a knowledge base to inform further research specific to Latinos in this area.…”

Section: Introductionmentioning

confidence: 99%

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Learning from Latino voices: Focus Groups’ Insights on Participation in Genetic Research

et al. 2017

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Background and Objectives There is a paucity of genetics research examining alcohol use among Latinos. The purpose of this study is to examine Latino perceptions of participation in alcohol studies that collect biological samples, an important precursor to increasing their participation in genetics research. Methods A synthesis of the literature addressing participation of racial/ethnic minorities in alcohol genetics research was undertaken. We developed a framework of themes related to barriers and facilitators for participation, which we then used to analyze two focus groups held with 18 Latino participants. Results From the literature review, we identified nine themes related to facilitators of and barriers to participation. They are, on continua: curiosity to disinterest; trust to mistrust; understanding to confusion; safety to danger; inclusion to exclusion; sense of connection to disconnection; hope to despair; ease to hassle; and benefit to cost. Another theme emerged from the focus groups: previous experience to no previous experience with health research. Conclusions Applying the themes from the literature review to Latino perspectives on providing biological samples for alcohol research helps expand their definition and applicability. Consideration of these themes when designing recruitment/retention materials and strategies may encourage Latino participation in alcohol genetics research. Scientific Significance An understanding of these themes and their significance for Latinos is offered in the form of “guiding questions” for researchers to consider as we strive for more inclusive research. Focus group participants were Mexican American; future research should further explore perspectives of this heterogeneous demographic group by studying other Latino subgroups.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Learning from Latino voices: Focus Groups’ Insights on Participation in Genetic Research

et al. 2017

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“…A pilot test of the questionnaire was conducted using a convenience sample of ten individuals that were representative of the proposed study population [35]. The questionnaire was re-administered to the same group of ten individuals within 7 days later as a test-retest measure of the internal consistency of individuals’ response.…”

Section: Methodsmentioning

confidence: 99%

Beliefs and Preferences for Medical Research Among African-Americans

Cain

Kalu

Kwagyan

et al. 2015

J. Racial and Ethnic Health Disparities

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Background and Objectives Numerous factors contribute to underrepresentation of African-Americans in medical research, including beliefs, historical events, structural, and health access obstacles. This study examined beliefs about medical research and the types of study methods preferred among potential African-American research participants. Methods A sample of 304 African-American participants from the Washington, DC Metropolitan area, completed a survey evaluating beliefs about medical research and preferred research study methods. Multiple Regression analyses were performed to examine how age, gender, and education may influence these beliefs and preferences for research study methods. Results The beliefs and preferences surveyed did not differ by age, gender, or educational attainment. There was an overwhelmingly favorable belief (90 %) that medical research was necessary and assists in finding a cure for a disease. Most respondents preferred participating in research related to issues with which they were familiar (e.g., diabetes, hypertension) or working with researchers of a similar ethnic background to themselves. Interestingly, though nonsignificant, those with higher levels of educational trended toward the belief that participation in research was risky. Conclusion The findings of this study indicate that certain beliefs about medical research participation and preferred study methodologies reported by African-Americans did not differ by age, gender, or level of education. This information about African-American’s beliefs and preferences regarding medical research should lead to an awareness of potential gains in African-American participation through the development of culturally sensitive medical research studies and methodologies.

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“…Currently, genetic information about risk for alcohol use disorders is not clinically predictive; however, the eventual translation of genetic testing into medical practice will depend on numerous factors, including clinicians’ and researchers’ abilities to properly engage patients of varied ancestral lineage in research to ensure the accuracy of applied tests for all populations. At least one study suggests that if there were a clinical genetic test for the susceptibility of alcohol dependence there would be a strong interest in testing among AAs . However, even among AAs with access to health care, participation in currently available multiplex genetic susceptibility tests is limited.…”

Section: Ethical Social and Legal Challenges Associated With Genetimentioning

confidence: 99%

Review: Genetic research on alcohol use outcomes in African American populations: A review of the literature, associated challenges, and implications

et al. 2017

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Background and Objectives There have been remarkable advances in understanding genetic influences on complex traits; however, individuals of African descent have been underrepresented in genetic research. Methods We review the limitations of existing genetic research on alcohol phenotypes in African Americans (AA) including both twin and gene identification studies, possible reasons for underrepresentation of AAs in genetic research, the implications of the lack of racially diverse samples, and special considerations regarding conducting genetic research in AA populations. Results There is a marked absence of large-scale AA twin studies so little is known about the genetic epidemiology of alcohol use and problems among AAs. Individuals of African descent have also been underrepresented in gene identification efforts; however, there have been recent efforts to enhance representation. It remains unknown the extent to which genetic variants associated with alcohol use outcomes in individuals of European and African descent will be shared. Efforts to increase representation must be accompanied by careful attention to the ethical, legal, and social implications of genetic research. This is particularly true for AAs due to the history of abuse by the biomedical community and the persistent racial discrimination targeting this population. Conclusions and Scientific Significance Lack of representation in genetic studies limits our understanding of the etiological factors that contribute to substance use and psychiatric outcomes in populations of African descent and has the potential to further perpetuate health disparities. Involving individuals of diverse ancestry in discussions about genetic research will be critical to ensure that all populations benefit equally from genetic advances.

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Genetic Testing for the Susceptibility to Alcohol Dependence: Interest and Concerns in an African American Population

Abstract: Although an overwhelming majority of participants expressed an interest in genetic testing for AD, there is an understandable high level of methodological and ethical concerns. Such information should form the basis of policies to guide future genetic testing of AD.

Cited by 10 publications

References 33 publications

Learning from Latino voices: Focus Groups’ Insights on Participation in Genetic Research

Learning from Latino voices: Focus Groups’ Insights on Participation in Genetic Research

Beliefs and Preferences for Medical Research Among African-Americans

Review: Genetic research on alcohol use outcomes in African American populations: A review of the literature, associated challenges, and implications

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