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Knowledge and Attitudes About Genetic Testing Among Black and White Women with Breast Cancer

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Abstract

Prior to embarking on a large descriptive evaluation of genetic/racial variations in symptom phenotype, we sought foundational information to determine racial differences in (1) feasibility (consent) and acceptability of collecting genomic samples, (2) genetic literacy, and (3) concerns of genomic research during breast cancer (BC) chemotherapy. Women with early-stage BC undergoing chemotherapy were recruited from an academic, urban breast care center. Information was collected for consent to participate, genetic literacy, and concerns about genetic testing in Black and White women with BC. Fifty-six women were eligible, and 48 were consented (24 Black, 24 White). All participants consented to blood testing. This highly educated sample’s mean age was 52.5 + 12.05 (years). Education (years) and genetic knowledge were positively correlated (p = .038). Genetic scores were high, and only one question significantly differed by race. On interview, most participants thought conducting genetic research helped to better understand hereditary disease and/or identify genes that cause disease and stated that they participated in the research to help other people. The majority of participants responded that friends/family would participate in genetic research without concerns, though three Black participants cited mistrust as a possible concern. Overall, there were high levels of genetic knowledge, slightly different between Black and White women. There were no high levels of personal concern regarding genetic testing. Black women reported more concern than White women that friends/family would have hesitations about participating in genetic research. There was general acceptability of blood collection for genetic testing among women with early-stage BC without racial difference.

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Data Availability

The data from this study are retained at University of Pittsburgh. The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

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Acknowledgments

The authors wish to thank the women who participated in the study.

Funding

This study was funded by the Clinical and Translational Science Institute University of Pittsburgh (5UL1TR001857; PI: Reis) Symptom Experience and Management outcomes According to Race + Genetics (SEMOARS + G) Feasibility study. Parent study funding Symptom Experience and Management Outcomes According to Race (R01-MD-012245; PI: Rosenzweig). M. McCall was supported by a Doctoral Degree Scholarship in Cancer Nursing (DSCN-19-049-01) from the American Cancer Society, the Rockefeller University Heilbrunn Family Center for Research Nursing through the generosity of the Heilbrunn Family, and by a Research Doctoral Scholarship from the Oncology Nursing Foundation.

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Correspondence to Margaret Q. Rosenzweig.

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Ethics Approval

The study was performed in line with the principles of the Declaration of Helsinki, its later amendments, or comparable ethical standards and was approved by the University of Pittsburgh Institutional Review Board (STUDY18100026).

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All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5).

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Informed consent was obtained from all participants for being included in the study.

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All research participants voluntarily provided their informed consent prior to any research activity.

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McCall, M.K., Ibikunle, S., Murphy, Y. et al. Knowledge and Attitudes About Genetic Testing Among Black and White Women with Breast Cancer. J. Racial and Ethnic Health Disparities 8, 1208–1216 (2021). https://doi.org/10.1007/s40615-020-00878-5

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