Disparities in Genetic Testing for Heritable Solid-Tumor Malignancies

Dillon, Jacquelyn; Ademuyiwa, Foluso O.; Barrett, Megan; Moss, Haley A.; Wignall, Elizabeth; Menendez, Carolyn S.; Hughes, Kevin S.; Plichta, Jennifer K.

doi:10.1016/j.soc.2021.08.004

Cited by 14 publications

(11 citation statements)

References 81 publications

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“…Patients from minority backgrounds and patients located in the Southern US are less likely to have access to genetic services than their counterparts. 28 , 29 Providers without access to a local geneticist or GC would likely benefit from guidance when managing possible genetics cases, which would ultimately improve the health benefits to their patients. Increased access to genetics providers using telemedicine has been suggested as one solution.…”

Section: Discussionmentioning

confidence: 99%

Primary Care Providers’ Use of Genetic Services in the Southeast United States: Barriers, Facilitators, and Strategies

Seibel

Gunn

Ali

et al. 2022

J Prim Care Community Health

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Introduction/Objectives: Collectively, genetic diseases are not that rare, and with increasing availability of genetics-informed healthcare management, primary care providers (PCPs) are more often asked to screen for or provide genetic services. Previous studies have identified barriers that impact PCPs’ ability to provide genetic services, including limited knowledge, training, and time/resources. This study set out to identify specific barriers limiting genetics service provision by PCPs within the Southeastern Regional Genetics Network (SERN) and resources that would help eliminate those barriers. Methods: PCPs were recruited through provider networks and invited to participate in semi-structured interviews, conducted via Zoom, recorded, and transcribed verbatim. Interview transcripts were independently coded by 2 coders using MAXQDA software. Thematic analysis was conducted. Results: Eleven interviews were conducted. Three predominant themes emerged from the data regarding factors impacting use of genetic services: system-wide factors, provider-specific factors, and patient factors. System-wide barriers included a lack of genetics providers and logistic challenges, which led to some PCPs coordinating referrals with other specialists or independently managing patients. Regarding provider-specific barriers, PCPs reported lack of genetics knowledge making referrals challenging. When possible, many PCPs contacted genetics providers for assistance. When not possible, some PCPs reached out to other colleagues or specialists for guidance. Patient-specific barriers included concerns or lack of information regarding genetics and unmet social needs. Many PCPs provided additional education regarding genetics appointments or testing benefits to their patients. Assistance from genetic counselors, electronic medical record systems that support referral to genetics, prior experience referring to genetics, established communication channels with genetics professionals, and highly motivated patients all facilitated improved collaboration with genetic services. PCPs provided suggestions for future resources to support interactions with genetics, including clear referral guidelines, increased access to genetics providers, improved test ordering processes, increased access to genetic education, and communication systems. Conclusions: PCPs face barriers at 3 different levels when engaging with genetic services: systems, providers, and patients. This study identified strategies that PCPs use to address these barriers, which are dependent on individual resources and practice settings. These strategies demonstrate resourcefulness in working to incorporate genetics into clinics operating at maximum capacity. By targeting barriers that uniquely impact providers, systems, and patients, as well as building upon strategies that PCPs are already using, medical providers can support PCPs to help with the provision of genetic services.

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Section: Discussionmentioning

confidence: 99%

Primary Care Providers’ Use of Genetic Services in the Southeast United States: Barriers, Facilitators, and Strategies

Seibel

Gunn

Ali

et al. 2022

J Prim Care Community Health

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“…Our results indicated that women were more likely to receive testing, while Hispanic respondents (compared to Non‐Hispanic White) were less likely to receive any kind of testing. Socioeconomic and racial disparities in genetic testing have been extensively documented, where previous studies indicate that disparities in obtaining testing could exacerbate differences in timing and intensity of care for various chronic diseases (Armstrong et al, 2015 ; Dillon et al, 2022 ; Koeller et al, 2017 ). It may be important to raise awareness of genetic testing in racial and ethnic minority groups, as awareness of genetic testing followed similar trends in prior research, indicating that less awareness could lead to reduced testing seen among minority groups in our results (Canedo et al, 2019 ; Hann et al, 2017 ; Krakow et al, 2017 ).…”

Section: Discussionmentioning

confidence: 99%

Attitudes towards and sociodemographic determinants of genetic test usage in the USA; data from the Health Information National Trend Survey, 2020

Swoboda

Wijayabahu

Fareed

2022

Journal of Genetic Counseling

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Genetic testing is increasingly used -given the potential benefits for consumers -that include diagnostic or predictive health information, guidance for therapeutics, and identification of ancestry or biological filiation (Franceschini et al., 2018;Phillips et al., 2018;Roberts & Middleton, 2017). Perceptions on genetic tests, mainly direct-to-consumer genetic tests (DTC), however, remain equivocal based on issues such as the lack of comprehensive oversight by government (U. S. Food and Drug Administration, 2019;Guerrini et al., 2020;Phillips et al., 2018), inadequate scientific evidence on such tests, and limited utility of genetic tests to support effective healthcare decisions (Pitini et al., 2018).A qualitative study of interviews with 15 participants by Marzulla and colleagues indicated the potential impact of DTC for their health; albeit, they expressed concerns about understanding

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“…En tanto, los análisis germinales evidencian riesgos de herencia, brindan opciones terapéuticas, acciones de reducción de riesgo en otros órganos, y la posibilidad de identificar miembros familiares en riesgo de cáncer 21,23,24 . Por estas razones, los análisis en cáncer hereditario implican la realización de dos procesos para su mejor entendimiento: un CI y un asesoramiento genético 29 .…”

Section: Cáncer Hereditario Y El Consentimiento Informadounclassified

El consentimiento informado en cáncer hereditario

Álvarez-Gómez¹,

Vargas-Huichochea²,

Herrera-Montalvo³

et al. 2023

GAMO

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El término «consentimiento informado» (CI) se refiere al proceso comunicativo indispensable para el acto médico y de investigación, donde una persona aprueba la realización de acciones de diagnóstico y/o tratamiento, o su participación en un protocolo, con pleno conocimiento del objetivo, beneficios, limitaciones y potenciales complicaciones de su decisión. El CI implica elementos éticos indispensables: a) la información, suficiente y clara para facilitar su comprensión; b) la capacidad de la persona invitada para tomar decisiones, siendo competente física, mental y legalmente, y c) la voluntariedad del proceso, para una decisión libre de coerción. En el análisis genético de predisposición a cáncer se han documentado retos bioéticos específicos del CI como la explicación de información compleja, resultados de relevancia futura para la salud propia y familiar, la propiedad del resultado y la incertidumbre de resultados de significado incierto, entre otros. Existe una convergencia del CI con el proceso del asesoramiento genético, cuyo objetivo es educar acerca de las enfermedades hereditarias y sus implicaciones. Su aparente similitud ha restringido la óptima realización de uno u otro proceso, limitando sus respectivos beneficios. La presente revisión busca brindar un panorama del estado del CI en cáncer hereditario, como punto de referencia para acciones que permitan mejorar su aplicación.

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Disparities in Genetic Testing for Heritable Solid-Tumor Malignancies

Cited by 14 publications

References 81 publications

Primary Care Providers’ Use of Genetic Services in the Southeast United States: Barriers, Facilitators, and Strategies

Primary Care Providers’ Use of Genetic Services in the Southeast United States: Barriers, Facilitators, and Strategies

Attitudes towards and sociodemographic determinants of genetic test usage in the USA; data from the Health Information National Trend Survey, 2020

El consentimiento informado en cáncer hereditario

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