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Cancer Control Research

Abstract

DESCRIPTION: Breast cancer survival rates are worse for African American women in all disease stages. Genetic screening can potentially contribute to the reduction in this disparity by focusing surveillance and early detection efforts on individuals with the greatest risk. However, most research concerning attitudes, beliefs and concerns regarding genetic testing for cancer susceptibility has been limited to middle-class Caucasian subjects. Before ethical and culturally sensitive clinical genetics services can be offered to under-served African Americans, it is critical that their concerns and health care resources be thoroughly assessed. This application requests two years of funding for an in-depth survey and needs assessment of a large and diverse African American kindred based in Southeast Louisiana. This kindred (K2099) is one of the few large BRCA1-linked breast cancer families of African American descent to be identified to date. The survey component of the project will investigate the cancer and genetics-related attitudes, beliefs and concerns of thirty male and fifty female members of the kindred. Measures will include demographic, medical history, and psychosocial variables. Health-related behaviors and access to health care will also be assessed. A second component of the project will involve the identification of low-cost screening, counseling and health care resources available to members of the kindred. Local consultants and advisors representing oncology, nursing, medical genetics, genetic counseling, and breast cancer advocacy will participate in the project. In addition, individual members of the kindred have agreed to serve on a family liaison team. The information gathered will be used to develop a BRCA1 testing protocol for family members. In addition, the data from this study will be compared with similar data being collected in a prospective study of BRCA1 testing among members of a Utah-based kindred of Northern European descent. The findings will address a critical gap in the research literature and inform the development of ethical and effective genetic screening, counseling, and follow-up care to under-served ethnic minority populations.