Awareness and acceptability of population-based screening for pathogenic BRCA variants: Do race and ethnicity matter?

Rubinsak, Lisa; Kleinman, A.; Quillin, John M.; Gordon, Sarah W.; Sullivan, Stephanie; Sutton, Arnethea L.; Sheppard, Vanessa B.; Temkin, Sarah M.

doi:10.1016/j.ygyno.2019.06.009

Cited by 13 publications

(20 citation statements)

References 35 publications

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“…These results are consistent with prior studies that have found significant differences in awareness and knowledge of BRCA1/2 testing among Black and White women (Rubinsak et al 2019;Suther and Kiros 2009) and limited knowledge regarding genetic testing specifically among Black women (Adams et al 2015;Hurtado-de-Mendoza et al 2017;Sheppard et al 2014;Thompson et al 2002). In an anonymous study of 301 women with a personal or family history of breast and/or ovarian cancer at a single academic institution, interest in genetic testing was the same between racial groups, but Black and Hispanic women were less likely to have awareness about genetic testing compared to White women (Rubinsak et al 2019). In an intercept study conducted with 50 Black women in public spaces, 88% of the women had never heard of BRCA1/2 genes (Adams et al 2015).…”

Section: Discussionsupporting

confidence: 92%

“…Notably, a few of our participants reported financial concerns as a barrier to obtaining genetic testing such as lack of insurance, insurance delays, testing not being covered by insurance, and high out-of-pocket costs. Although most types of insurance cover the cost of BRCA1/2 testing for individuals who meet guideline criteria, many patients still incur out-ofpocket expenses associated with genetic testing and downstream services following a positive test result (Rubinsak et al 2019). In our sample, the median number of years since diagnosis was 2 years prior to the interview.…”

Section: Discussionmentioning

confidence: 99%

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Knowledge and perceptions of BRCA1/2 genetic testing and needs of diverse women with a personal or family history of breast cancer in South Florida

et al. 2021

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The vast majority of (BRCA1/2) genetic testing has been conducted in White women, in particular Ashkenazi Jewish women, with limited information available for Black and Hispanic women. Understanding perspectives of those who are underserved is critical to developing interventions to support inclusive approaches to genetic testing. This qualitative study explored knowledge and perceptions of BRCA1/2 genetic testing among diverse women in South Florida. We also explored participants' information needs. Convenience sampling was used to recruit a diverse group of 15 women with a personal or family history of breast cancer. We conducted semi-structured interviews and used grounded theory method to analyze the data. Five themes were identified: (1) lacking awareness and knowledge of BRCA1/2 genetic testing and results among Black women, (2) perceiving BRCA1/2 genetic testing as beneficial to themselves and a way to be proactive about cancer risk, (3) perceiving BRCA1/2 genetic testing as beneficial to family members, (4) interactions with healthcare providers and the healthcare system that shape genetic testing experiences, and (5) information needs for reducing cancer risk and promoting health. Our findings suggest that diverse underserved women perceived genetic testing as beneficial to themselves and family members. Women needed more information about the BRCA genes and genetic testing, prevention strategies, and the latest breast cancer research. Healthcare providers, particularly nurse practitioners, need to engage diverse high-risk women in discussions about their cancer risk, address unmet information needs, and, in particular, educate Black women about the benefits of pursuing genetic testing.

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Section: Discussionsupporting

confidence: 92%

Section: Discussionmentioning

confidence: 99%

Knowledge and perceptions of BRCA1/2 genetic testing and needs of diverse women with a personal or family history of breast cancer in South Florida

et al. 2021

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“…Contrary to reports of low genetic literacy, consumers express interest in understanding hereditary risk and how to manage personal genetic risk factors, but lack comprehension in genetic risk perception, often basing it on family history and personal experience (Henneman et al, 2003;Smerecnik et al, 2008;Taylor, 2011). Knowledge in genetics, especially pertaining to healthcare strongly depends upon sociodemographic factors, where those with lower levels of education, older age, or of ethnic minority, tend to have lower knowledge and understanding of genetics, and are more likely to adopt a deterministic view around genetic test results (Morren et al, 2007;Smerecnik et al, 2008;Kaphingst et al, 2012;Rubinsak et al, 2019). Notably, attitudes are predominantly positive toward genetic testing, and higher levels of genetic knowledge are associated with more positive views (Henneman et al, 2003;Morren et al, 2007;Meisel et al, 2016).…”

Section: Introductionmentioning

confidence: 99%

Queensland Consumers’ Awareness and Understanding of Clinical Genetics Services

Wallingford

Cutler²,

Istiko³

et al. 2020

Front. Genet.

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As genetic testing becomes increasingly utilized in health care, consumer awareness and understanding is critical. Both are reported to be low in Australia, though there are limited studies to date. A consumer survey assessed perceived knowledge, awareness and attitudes toward genetic medicine, prior to consumers' genomics forums in Queensland in 2018 and 2019. Data was analyzed using t-test and Mann-Whitney U tests analysis to detect any associations between sociodemographic factors and familiarity or attitudes. This highly educated and experienced health consumer cohort reported they were significantly more familiar with the healthcare system generally than genetic medicine specifically (p < 0.0001). Consumers perceived that genetic testing would be significantly more important in the future than it is currently (p < 0.00001). Consumers agreed that genetic testing should be promoted (91.4%), made available (100%), better funded (94.2%), and offered to all pregnant women (81.6%). The preferred learning modality about genetics was internet sites (62.7%) followed by talks/presentations (30.8%). Benefits of genetic testing, reported in qualitative responses, included the potential for additional information to promote personal control and improve healthcare. Perceived concerns included ethical implications (including privacy and discrimination), and current limitations of science, knowledge and/or practice. This study demonstrates that even knowledgeable consumers have little familiarity with genetic medicine but are optimistic about its potential benefits. Ethical concerns, particularly concerns regarding genetic discrimination should inform legislation and policy. Consumers are supportive of online resources in increasing genomic literacy.

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“…Most studies investigated the perspectives of the public ( n = 18) ( Shaw and Bassi, 2001 ; Laskey et al, 2003 ; Sanderson et al, 2004 , 2017 ; Hardie, 2011 ; Henneman et al, 2011 ; Nielsen and El-Sohemy, 2012 ; Haga et al, 2014 ; O’Neill et al, 2015 ; Shiloh et al, 2015 ; Godino et al, 2016 ; Nicholls et al, 2016 ; Sanderson et al, 2016 ; Fenton et al, 2018 ; Hay et al, 2018 ; Rego et al, 2019 ; Zoltick et al, 2019 ; Smit et al, 2020 ), while six studies investigated the perspective of patients ( Allen et al, 2008 ; Neghina and Anghel, 2010 ; Nusbaum et al, 2013 ; Hietaranta-Luoma et al, 2015 ; East et al, 2019 ; Rubinsak et al, 2019 ), only four investigated the perspective of providers ( Borry et al, 2008 ; Haga et al, 2011 ; Vassy et al, 2014 ; Joshi et al, 2020 ), and two investigated multiple perspectives ( Toiviainen et al, 2003 ; Vassy et al, 2017 ).…”

Section: Resultsmentioning

confidence: 99%

“…Thirty articles were included. (Shaw and Bassi, 2001;Laskey et al, 2003;Toiviainen et al, 2003;Sanderson et al, 2004Sanderson et al, , 2017Allen et al, 2008;Borry et al, 2008;Neghina and Anghel, 2010;Haga et al, 2011;Hardie, 2011;Henneman et al, 2011;Nielsen and El-Sohemy, 2012;Nusbaum et al, 2013;Haga et al, 2014;Vassy et al, 2014;Hietaranta-Luoma et al, 2015;O'Neill et al, 2015;Shiloh et al, 2015;Godino et al, 2016;Nicholls et al, 2016;Sanderson et al, 2016;Vassy et al, 2017;Fenton et al, 2018;Hay et al, 2018;East et al, 2019;Rego et al, 2019;Rubinsak et al, 2019;Zoltick et al, 2019;Joshi et al, 2020;Smit et al, 2020).…”

Section: Study Characteristicsmentioning

confidence: 99%

Barriers and Facilitators for Population Genetic Screening in Healthy Populations: A Systematic Review

et al. 2022

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Studies suggest that 1–3% of the general population in the United States unknowingly carry a genetic risk factor for a common hereditary disease. Population genetic screening is the process of offering otherwise healthy patients in the general population testing for genomic variants that predispose them to diseases that are clinically actionable, meaning that they can be prevented or mitigated if they are detected early. Population genetic screening may significantly reduce morbidity and mortality from these diseases by informing risk-specific prevention or treatment strategies and facilitating appropriate participation in early detection. To better understand current barriers, facilitators, perceptions, and outcomes related to the implementation of population genetic screening, we conducted a systematic review and searched PubMed, Embase, and Scopus for articles published from date of database inception to May 2020. We included articles that 1) detailed the perspectives of participants in population genetic screening programs and 2) described the barriers, facilitators, perceptions, and outcomes related to population genetic screening programs among patients, healthcare providers, and the public. We excluded articles that 1) focused on direct-to-consumer or risk-based genetic testing and 2) were published before January 2000. Thirty articles met these criteria. Barriers and facilitators to population genetic screening were organized by the Social Ecological Model and further categorized by themes. We found that research in population genetic screening has focused on stakeholder attitudes with all included studies designed to elucidate individuals’ perceptions. Additionally, inadequate knowledge and perceived limited clinical utility presented a barrier for healthcare provider uptake. There were very few studies that conducted long-term follow-up and evaluation of population genetic screening. Our findings suggest that these and other factors, such as prescreen counseling and education, may play a role in the adoption and implementation of population genetic screening. Future studies to investigate macro-level determinants, strategies to increase provider buy-in and knowledge, delivery models for prescreen counseling, and long-term outcomes of population genetic screening are needed for the effective design and implementation of such programs.Systematic Review Registration: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020198198

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Awareness and acceptability of population-based screening for pathogenic BRCA variants: Do race and ethnicity matter?

Cited by 13 publications

References 35 publications

Knowledge and perceptions of BRCA1/2 genetic testing and needs of diverse women with a personal or family history of breast cancer in South Florida

Knowledge and perceptions of BRCA1/2 genetic testing and needs of diverse women with a personal or family history of breast cancer in South Florida

Queensland Consumers’ Awareness and Understanding of Clinical Genetics Services

Barriers and Facilitators for Population Genetic Screening in Healthy Populations: A Systematic Review

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