Attitudes and experiences regarding genetic research among persons of African descent

Scott, Denise M.; Thomas, Veronica G.; Otado, Jane; Rockcliffe, Faun; Olopoenia, Omotomilade; Johnson, Dietrich; Callier, Shawneequa L.

doi:10.1007/s12687-019-00422-x

Cited by 7 publications

(4 citation statements)

References 23 publications

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“…Unfavorable attitudes toward genetic testing among AAs are commonly reported, 49‐51 and such mistrust is justified in the context of historical maltreatment and discrimination in healthcare 52 . However, more recent data show heightened interest among AAs in learning about genetic risk for diseases 53‐55 . There is a need for standardized, culturally tailored patient education protocols in kidney genetics and the role of genetic counseling should be explored.…”

Section: Discussionmentioning

confidence: 99%

Opinions of African American adults about the use of apolipoprotein L1 (ApoL1) genetic testing in living kidney donation and transplantation

Berrigan

Austrie

Fleishman

et al. 2021

American Journal of Transplantation

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Apolipoprotein L1 (ApoL1) predictive genetic testing for kidney disease, and its emerging role in transplantation, remains controversial as it may exacerbate underlying disparities among African Americans (AAs) at increased risk. We conducted an online simulation among AAs (N = 585) about interest in ApoL1 testing and its cofactors, under 2 scenarios: as a potential living donor (PLD), and as a patient awaiting transplantation. Most respondents (61%) expressed high interest in genetic testing as a PLD: age ≥35 years (adjusted odds ratio [aOR], 1.75; 95% confidence interval [CI], 1.18, 2.60, P = .01), AA identity (aOR, 1.67; 95% CI, 1.02, 2.72, P = .04), perceived kidney disease risk following donation (aOR, 1.68; 95% CI, 1.03, 2.73, P = .03), interest in genetics (aOR, 2.89; 95% CI, 1.95, 4.29, P = .001), and genetics self‐efficacy (aOR, 2.38; 95% CI, 1.54, 3.67, P = .001) were positively associated with ApoL1 test interest. If awaiting transplantation, most (89%) believed that ApoL1 testing should be done on AA deceased donors, and older age (aOR, 1.85; 95% CI, 1.03, 3.32, P = .04) and greater interest in genetics (aOR, 2.61; 95% CI, 1.41, 4.81, P = .002) were associated with interest in testing deceased donors. Findings highlight strong support for ApoL1 testing in AAs and the need to examine such opinions among PLDs and transplant patients to enhance patient education efforts.

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Section: Discussionmentioning

confidence: 99%

Opinions of African American adults about the use of apolipoprotein L1 (ApoL1) genetic testing in living kidney donation and transplantation

Berrigan

Austrie

Fleishman

et al. 2021

American Journal of Transplantation

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“…genomic research related to cancer, diabetes and other chronic diseases [25]. The observation that glaucoma patients from our setting may perhaps harbor a higher willingness to participate in glaucoma genetic studies highlights the need for further studies to elucidate these findings.…”

Section: Plos Onementioning

confidence: 91%

Determinants of participation in glaucoma genomic research in South East Nigeria: A cross-sectional analytical study

Uche,

Okoye,

Kizor-Akaraiwe

et al. 2023

PLoS ONE

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Background Genomic research advances the understanding of human health and disease. It also drives both the discovery of salient genetic association(s) as well as targeted screening, diagnostic and therapeutic strategies. Human subject participation is crucial for the success of genomic research. Methods This is a cross sectional analytical study conducted at two tertiary centers in Enugu Southeast Nigeria. Semi structured questionnaires were administered to eligible consenting participants. Data on their demographics, willingness to participate in genomic research and motivation for participation were obtained. Data was analyzed using Stata version 17 and summarized using median, frequencies and interquartile range(IQR). Associations between covariates were evaluated with Chi square test and multivariable logistic regression. Results Among 228 glaucoma subjects who participated in our study,119(52.2%) were female and 109(47.8%) were male. The median age was 64 years(IQR = 50–76). Although 219 (96.0%) participants expressed willingness to participate in a glaucoma genetic study, only 27(11.9%) of them will be willing to participate if there will not be feedback of results to participants (χ2 = 18.59, P<0.001). No participant expressed willingness to submit ocular tissue samples. Majority (96.2%) of subjects will not participate if the intended research required submission of body samples after death. Desire to know more about glaucoma (63%) was the most common reason for participation. In a multivariable logistic model, subjects between 61–90 years (p = 0.004, OR = 7.2) were 7 times more likely to express willingness to participate in glaucoma genetic research after adjusting for other covariates when compared to subjects aged 41–60 years. Other covariates did not influence participants’ willingness. Conclusion Glaucoma subjects are more likely to be willing to participate in genetic research, if they would receive feedback of results. Willingness to participate in genetic research is significantly associated with age. Limitations We did not evaluate the salient options for feedback of results to participants in our study.

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“…9 This mistrust was exacerbated by ethical issues raised by the establishment of HeLa cell lines from tissue removed from Henrietta Lacks without her permission and was intensified by the recent publication of the genomic sequence of a strain of the HeLa cell lines that, despite having implications for Henrietta Lacks' descendants, was conducted without their agreement. 11 Although this latter controversy has been resolved with the Lacks family, 12 such incidences deepen mistrust in research by marginalized groups in the Unites States.…”

Section: Highlights From Ethical Guidelines For Genetic and Genomic R...mentioning

confidence: 99%

Considerations for Cardiovascular Genetic and Genomic Research With Marginalized Racial and Ethnic Groups and Indigenous Peoples: A Scientific Statement From the American Heart Association

Mudd‐Martin¹,

Cirino²,

Barcelona³

et al. 2021

Circ: Genomic and Precision Medicine

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Historically marginalized racial and ethnic groups and Indigenous peoples are burdened by significant health inequities that are compounded by their underrepresentation in genetic and genomic research. Of all genome-wide association study participants, ≈79% are of European descent, despite this group constituting only 16% of the global population. For underrepresented populations, polygenic risk scores derived from these studies are less accurate in predicting disease phenotypes, novel population-specific genetic variations may be misclassified as potentially pathogenic, and there is a lack of understanding of how different populations metabolize drugs. Although inclusion of marginalized racial and ethnic groups and Indigenous peoples in genetic and genomic research is crucial, scientific studies must be guided by ethical principles of respect, honesty, justice, reciprocity, and care for individuals and communities. Special considerations are needed to support research that benefits the scientific community as well as Indigenous peoples and marginalized groups. Before a project begins, collaboration with community leaders and agencies can lead to successful implementation of the study. Throughout the study, consideration must be given to issues such as implications of informed consent for individuals and communities, dissemination of findings through scientific and community avenues, and implications of community identity for data governance and sharing. Attention to these issues is critical, given historical harms in biomedical research that marginalized groups and Indigenous peoples have suffered. Conducting genetic and genomic research in partnership with Indigenous peoples and marginalized groups guided by ethical principles provides a pathway for scientific advances that will enhance prevention and treatment of cardiovascular disease for everyone.

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Attitudes and experiences regarding genetic research among persons of African descent

Cited by 7 publications

References 23 publications

Opinions of African American adults about the use of apolipoprotein L1 (ApoL1) genetic testing in living kidney donation and transplantation

Opinions of African American adults about the use of apolipoprotein L1 (ApoL1) genetic testing in living kidney donation and transplantation

Determinants of participation in glaucoma genomic research in South East Nigeria: A cross-sectional analytical study

Considerations for Cardiovascular Genetic and Genomic Research With Marginalized Racial and Ethnic Groups and Indigenous Peoples: A Scientific Statement From the American Heart Association

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