African-Americans Are Less Frequently Assessed For Hereditary Colon Cancer

Garland, Victoria; Cioffi, Joseph; Kirelik, Danielle; Pascual, Lauren; Borum, Marie L.

doi:10.1016/j.jnma.2020.09.146

Cited by 4 publications

(2 citation statements)

References 33 publications

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“…Breast cancer incidence rates are higher among younger (<45 years old) Black women than among white women and mortality from breast cancer is 42% higher in Black patients than in white patients. Similarly, colorectal cancer tends to present earlier in Black patients than in white patients and Lynch syndrome is the most common colorectal cancer syndrome among high-risk Black patients (Garland et al 2021 ). Even so, Black hereditary cancer patients are less likely to be referred to genetic testing and counseling services (Chapman-Davis et al 2021 ; Dharwadkar et al 2022 ; Sheppard et al 2014 ).…”

Section: Introductionmentioning

confidence: 99%

Big advocacy, little recognition: the hidden work of Black patients in precision medicine

Gerido,

Resnicow,

Stoffel

et al. 2023

J Community Genet

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As cost-effective next-generation genome sequencing rapidly develops, calls for greater inclusion of Black people in genomic research, policy, and practice are necessary for effective translation of genomic science into precision population health and medicine. Employing a community-based participatory mixed methods research design, we developed a semi-structured survey that was disseminated to three cancer advocacy organizations. Of the 81 survey respondents 49 (60%) self-identified as Black, and 26 (32%) indicated a prior breast cancer diagnosis. Black participants’ expressed concerns about genetic testing were evenly distributed between concerns that could be addressed through genetic counseling (24%) and concerns about subsequent use of their genetic data (27%). Patient advocates contributed to contextualization of respondent concerns in terms of community experiences. Although genetic counseling services and policies governing genomic data use are not always accessible to many Black communities, advocates on our research team provided a bridge to discussion of the intersection between respondent concerns and the roles advocates play in filling gaps in access to genetic counseling and data governance. Concerns expressed by Black patients underscore a shared need among all patients for access to education, inclusion in research, and assurances regarding the use and handling of genetic data. Black cancer patients have joined in patient-led efforts to overcome systemic inequities in cancer care to improve their health outcomes through representation. Often their efforts are overshadowed by a relentless burden of continued health disparities. Future research should support their hidden work as a means to reduce barriers and improve representation in genomic databases.

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Section: Introductionmentioning

confidence: 99%

Big advocacy, little recognition: the hidden work of Black patients in precision medicine

Gerido,

Resnicow,

Stoffel

et al. 2023

J Community Genet

View full text Add to dashboard Cite

show abstract

“…Hereditary breast cancer and ovarian cancer (HBOC) incidence rates tend to be higher among younger (< 45 years old) Black women than among white women and mortality from breast cancer is 42% higher in Black patients than in white patients. Similarly, hereditary colorectal cancer tends to present earlier in Black patients than in white patients and Lynch syndrome is the most common colorectal cancer syndrome among high-risk Black patients (Garland et al, 2021). Black hereditary cancer patients are less likely to be referred to genetic testing and counseling services (Chapman- Davis et al, 2021;Dharwadkar et al, 2022;Graves et al, 2011;Sheppard et al, 2014).…”

Section: Introductionmentioning

confidence: 99%

Big Advocacy, Little Recognition: The Hidden Work of Black Patients in Precision Medicine

Gerido

Resnicow

Stoffel³

et al. 2023

Preprint

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Public health genomics prioritizes effective and ethical translation of genomic science into population health precision medicine. With the rapid development of cost-effective, next-generation genome sequencing, calls are growing for greater inclusion of Black people in genomic research, policy, and practice. Genetic testing is often the first step in precision medicine. This study explores racial differences in patient concerns about genetic testing for hereditary breast cancer. Employing a community-based participatory mixed methods research design, we developed a semi-structured survey that was shared broadly. There were 81 survey respondents, of which, forty-nine (60%) self-identified as Black, twenty-six (32%) indicated they had a history of a breast cancer diagnosis, or had received BRCA genetic testing. Black participants who expressed concerns about genetic testing were fairly equally distributed between concerns that could be addressed with genetic counseling (24%) and concerns about the subsequent use of their genetic data (27%). The concerns expressed by the participants in our study underscore a need for transparent disclosures and assurances regarding the use and handling of genetic data. These findings should be viewed in context with patient-led efforts to overcome systemic inequities in cancer care, as Black cancer patients have joined forces with advocates and researchers to develop protective health data initiatives and to improve their representation in genomic datasets. Future research should prioritize the information needs and concerns of Black cancer patients. Interventions should be developed to support their hidden work as a means to reduce barriers and improve representation in precision medicine.

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Advancing Implementation Science in Cancer Genomics: Progressing from Discovery to Population Health Benefit

Chambers,

Goddard

2024

Public Health Genomics

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African-Americans Are Less Frequently Assessed For Hereditary Colon Cancer

Cited by 4 publications

References 33 publications

Big advocacy, little recognition: the hidden work of Black patients in precision medicine

Big advocacy, little recognition: the hidden work of Black patients in precision medicine

Big Advocacy, Little Recognition: The Hidden Work of Black Patients in Precision Medicine

Advancing Implementation Science in Cancer Genomics: Progressing from Discovery to Population Health Benefit

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