Cancer Control Research
1R03CA070593-01
Kinney, Anita Y.
NEEDS ASSESSMENT--A HIGH RISK AFRICAN AMERICAN FAMILY
AbstractDESCRIPTION: 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.
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