Communication, Content &amp; Impact of Genetics in Breast Cancer
Creators: name: University Of California Office Of The President
Publisher: name: University of California Office of the President
publisherIdentifier: https://ror.org/00dmfq477
publisherIdentifierScheme: ROR
Year: 2024

description: Recent genetic discoveries have enabled the ability to identify women at high risk for breast cancer. Identifying women at high risk and instituting measures to lower the likelihood of cancer, is the ultimate goal of cancer risk assessment. Use of this potentially life-saving discovery has, however, revealed multiple risk management and societal concerns. Responsible use of this new technology, therefore, requires healthcare providers to be prepared to address the medical, psychological, social, ethical, and legal challenges facing women at high risk for breast cancer. More information is urgently needed about women who seek genetic counseling and genetic testing for inherited breast cancer risk, the impact of the risk assessment process, and the choices women make to lower the odds of cancer developing. 
 
 
 
 
 
 
 
 The aims of this project therefore are to: 1) describe the characteristics, motivations, and concerns of women seeking genetic counseling/genetic testing for breast cancer predisposition; 2) measure the impact of this counseling and testing on the women's perception of cancer risk, concerns about cancer, risk management practices, general mood and distress, and communication of risk; and 3) compare among women appropriate for genetic testing, those who undergo testing and those who do not. Participants in the study will be derived from one of the largest groups of women seeking genetic breast cancer risk assessment in California. Study participation consists of completing 1 to 4 mailed questionnaires at various time-points prior to and following risk assessment. A sub-set of women will also participate in a one-time focus group to further explore the issues these women face. Funds are available to cover the costs of genetic counseling and genetic testing for women who are indigent.
 
 
 
 
 
 
 
 The City of Hope National Medical Center services a diverse ethnic and socio-economic community, and is a disproportionate care provider with 30% of patients being recipients of Medi-Cal (California’s Medi-care program). The investigative team represents the disciplines of oncology, genetics, nursing, psychology, social work, ethics and law. The team has expertise in clinical cancer genetics, breast cancer risk management, quality of life measures, and includes a liaison to community-based support services. Team members have personal and professional experience in breast cancer risk assessment and/or related psychological, legal, and ethical issues. 
 
 
 
 
 
 
 
 The study results will allow us to tailor our counseling approach/content to provide more sensitive and responsive care for women who seek cancer risk services. The findings will also enable us to educate clinicians about the complex issues and values involved in cancer risk assessment, and could result in more appropriate referral of women for risk assessment, ultimately culminating in the prevention or earlier detection of breast cancer.