Beliefs about Genetically Targeted Care in African Americans

Halbert, Chanita Hughes; McDonald, Jasmine A.; Magwood, Gayenell; Jefferson, Melanie

doi:10.1016/j.jnma.2017.02.004

Cited by 9 publications

(17 citation statements)

References 29 publications

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“…Genetic testing is historically underutilized by minority populations, reflecting inequities in health-care access and concerns about its applications. 27,28 Efforts to operationalize APOL1 testing directly impacts individuals from Black communities, who have endured abuses done to them in the name of research and medicine. 29,30 Therefore, it is paramount that transplant centers that offer APOL1 testing to their prospective living donors can ensure their informed consent.…”

Section: Discussionmentioning

confidence: 99%

Impact of education on APOL1 testing attitudes among prospective living kidney donors

Nestor

King

et al. 2021

Clinical Transplantation

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It is unknown how providing prospective living donors with information about APOL1, including the benefits and drawbacks of testing, influences their desire for testing. In this study, we surveyed 102 participants with self-reported African ancestry and positive family history of kidney disease, recruited from our nephrology waiting room. We assessed views on APOL1 testing before and after presentation of a set of potential benefits and drawbacks of testing and quantified the self-reported level of influence individual benefits and drawbacks had on participants' desire for testing in the proposed context of living donation. The majority of participants (92%) were aware of organ donation and more than half (56%) had considered living donation. And though we found no significant change in response following presentation of the potential benefits and the drawbacks of APOL1 testing by study end significance, across all participants, "becoming aware of the potential risk of kidney disease among your immediate family" was the benefit with the highest mean influence (3.3±1.4), while the drawback with the highest mean influence (2.9±1.5) was "some transplant centers may not allow you to donate to a loved one". This study provides insights into the priorities of prospective living donors and suggests concern for how the information affects family members may strongly influence desires for testing. It also highlights the need for greater community engagement to gain a deeper understanding of the priorities that influence decision making on APOL1 testing.

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Section: Discussionmentioning

confidence: 99%

Impact of education on APOL1 testing attitudes among prospective living kidney donors

Nestor

King

et al. 2021

Clinical Transplantation

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“…Approximately half of the included publications (n = 13) did not describe the method by which participants were identified as Black or African-American (Armstrong et al, 2012;Berrigan et al, 2021;Cox et al, 2007;Gordon et al, 2017;Gustafson et al, 2007;Koraishy et al, 2018;Mayo-Gamble et al, 2019;McDonald et al, 2014;Miller, 2020;Myers et al, 2000;Ochs-Balcom et al, 2011;Powell-Young & Spruill, 2013;Umeukeje et al, 2019). Of those that included this information (n = 14), most (n = 12) relied on self-report (Bevan et al, 2003;Halbert et al, 2017;Halbert, Gandy Jr, et al, 2006;Horowitz et al, 2014Horowitz et al, , 2016Horowitz et al, , 2017Kikut et al, 2020;Mayo-Gamble, 2015;Mayo-Gamble et al, 2018;Nooruddin et al, 2020;Parikh et al, 2019;Young et al, 2019), one relied on the medical record (Gordon et al, 2018), and one (Gordon, Amórtegui, et al, 2019) used the medical record and "confirmed" race when participants were recruited, but the confirmation method was unclear (e.g., selfreport or researcher assessment).…”

Section: Quality Assessment and Risk Of Biasmentioning

confidence: 99%

“…An overall need for more health education was reported in several studies (Gustafson et al, 2007;Horowitz et al, 2016;Miller, 2020). The lack of knowledge about genetics and research in general (Halbert et al, 2017;Mayo-Gamble et al, 2019;Ochs-Balcom et al, 2011), about what genetic test results might mean for an individual (Gordon et al, 2018;Gordon, Amórtegui, et al, 2019;Gordon, Amόrtegui, et al, 2019;Horowitz et al, 2016),…”

Section: Communication and Information Needsmentioning

confidence: 99%

Attitudes and beliefs regardingrace‐targetedgenetic testing of Black people: A systematic review

Iltis

Rolf

Yaeger

et al. 2023

Journal of Genetic Counseling

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Geographical ancestry has been associated with an increased risk of various genetic conditions. Race and ethnicity often have been used as proxies for geographical ancestry. Despite numerous problems associated with the crude reliance on race and ethnicity as proxies for geographical ancestry, some genetic testing in the clinical, research, and employment settings has been and continues to be race-or ethnicitybased. Race-based or race-targeted genetic testing refers to genetic testing offered only or primarily to people of particular racial or ethnic groups because of presumed differences among groups. One current example is APOL1 testing of Black kidney donors. Race-based genetic testing raises numerous ethical and policy questions. Given the ongoing reliance on the Black race in genetic testing, it is important to understand the views of people who identify as Black or are identified as Black (including African American, Afro-Caribbean, and Hispanic Black) regarding race-based genetic testing that targets Black people because of their race. We conducted a systematic review of studies and reports of stakeholder-engaged projects that examined how people who identify as or are identified as Black perceive genetic testing that specifically presumes genetic differences exist among racial groups or uses race as a surrogate for ancestral genetic variation and targets Black people. Our review identified 14 studies that explicitly studied this question and another 13 that implicitly or tacitly studied this matter. We found four main factors that contribute to a positive attitude toward race-targeted genetic testing (facilitators) and eight main factors that are associated with concerns regarding race-targeted genetic testing (barriers). This review fills an important gap. These findings should inform future genetic research and the policies and practices developed in clinical, research, public health, or other settings regarding genetic testing.

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“…Genetic testing has been historically underutilized by minority populations, reflecting disparities in health-care access as well as negative perceptions regarding its application 259–261 . To ensure that the benefits of genomic nephrology are available to all patients with kidney disease, it is imperative that minority populations have equal access to participation in genetic research and to clinical genetic assessment.…”

Section: Ethical Legal and Social Implicationsmentioning

confidence: 99%

Genomic medicine for kidney disease

2018

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Technologies such as next-generation sequencing and chromosomal microarray have advanced the understanding of the molecular pathogenesis of a variety of renal disorders. Genetic findings are increasingly used to inform the clinical management of many nephropathies, enabling targeted disease surveillance, choice of therapy, and family counselling. Genetic analysis has excellent diagnostic utility in paediatric nephrology, as illustrated by sequencing studies of patients with congenital anomalies of the kidney and urinary tract and steroid-resistant nephrotic syndrome. Although additional investigation is needed, pilot studies suggest that genetic testing can also provide similar diagnostic insight among adult patients. Reaching a genetic diagnosis first involves choosing the appropriate testing modality, as guided by the clinical presentation of the patient and the number of potential genes associated with the suspected nephropathy. Genome-wide sequencing increases diagnostic sensitivity relative to targeted panels, but holds the challenges of identifying causal variants in the vast amount of data generated and interpreting secondary findings. In order to realize the promise of genomic medicine for kidney disease, many technical, logistical, and ethical questions that accompany the implementation of genetic testing in nephrology must be addressed. The creation of evidence-based guidelines for the utilization and implementation of genetic testing in nephrology will help to translate genetic knowledge into improved clinical outcomes for patients with kidney disease.

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Beliefs about Genetically Targeted Care in African Americans

Cited by 9 publications

References 29 publications

Impact of education on APOL1 testing attitudes among prospective living kidney donors

Impact of education on APOL1 testing attitudes among prospective living kidney donors

Attitudes and beliefs regardingrace‐targetedgenetic testing of Black people: A systematic review

Genomic medicine for kidney disease

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