Genetic Counseling and Testing in African American Women Interview

Graves, Kristi D.; Christopher, Juleen; Harrison, Toni Michelle; Peshkin, Beth N.; Isaacs, Claudine; Sheppard, Vanessa B.

doi:10.1037/t42683-000

Cited by 2 publications

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“…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

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Stoffel³

et al. 2023

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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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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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What Black Women Know and Want to Know About Counseling and Testing for BRCA1/2

et al. 2014

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Black women are just as likely to have hereditary breast cancer mutations as White women, yet their participation in genetic counseling and testing is substantially lower. This study sought to describe Black women’s awareness and perceptions of BRCA1/2 testing and to identify barriers and motivators to seeking BRCA1/2 services. Fifty intercept interviews were conducted with Black women in public places (a professional women’s basketball game, a grocery store, a faith-based community event, and the waiting area at a breast care clinic) in Washington, DC. More than half of the women (54%) were aware that genetic tests to determine risk for certain breast and ovarian cancers exist, but the majority (88%) had never heard of BRCA1/2 , specifically. After hearing a description of BRCA1/2 genetic markers, 82% stated that they would agree to BRCA1/2 testing if it was offered to them. Perceived advantages of testing included cancer prevention and the ability to share information with family members. Perceived disadvantages included emotional distress associated with identification of the mutation and the potential misuse of results to deny healthcare or employment. Physician recommendation, self-care, and known family history were among the motivators for testing. Women listed possible media and venues for intervention. In spite of low rates of BRCA1/2 testing in the Black community, women in this sample were open to the idea. Interventions that address barriers and include cultural tailoring are necessary.

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Genetic Counseling and Testing in African American Women Interview

Cited by 2 publications

References 0 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

What Black Women Know and Want to Know About Counseling and Testing for BRCA1/2

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