There is almost no systematic, empirical research on the topic of how information about genetic risk information travels through families, what family and cultural characteristics might impede or promote its dissemination, and how individuals at genetic risk conceptualize these issues. The purpose of this project is to explore these issues using risk information about breast and ovarian cancer as a model.
This project is focused on the ways in which two diagnostic technologies--screening mammography and genetic testing--emerged, diffused, interacted with medical and social thought and values, and provoked controversy. The central research questions are: What are the factors that have led to the dramatic shift in beliefs about, and practices surrounding, breast cancer risk over the past fifty years? What have been the consequences?
CRIP III is a self-administered mailed survey of 1500 cancer risk information providers (CRIPs). The questionnaire was developed from the results of the telephone interview guide (P-TIG) of CRIP Phase II and is designed to assess the knowledge, attitudes, behaviors, practices and perceptions (KABPP) of more formally recognized CRIP. The sample will include all CRIP identified (but not necessarily interviewed( in CRIP Phase II (n=250, U.S.; n=250, Canada). A similar CRIP group in the U.K. (N-125) and New Zealand/Australia (n=125) will also be included.
The long term goal of this project is to improve patient understanding about breast cancer risk and genetic testing. This project will conduct a clinical trial to evaluate the effectiveness of a CD-ROM, called 'Counseling by Computer: Breast Cancer Risk and Genetic Testing', at educating women about breast cancer risk, and options and implications of genetic testing.
The genes conferring increased susceptibility to breast and ovarian cancer, BRCA1 and BRACA2, were identified in the mid-1990's and commercial testing became available soon thereafter. Intensive evaluation of women undergoing testing for BRCA1/2 germline mutations has been conducted, and has demonstrated that women participating in genetic testing through highly structured and supportive programs conducted largely at academic institutions have generally done well through the process and in the long term (1-5).
This application is for a 5-year competitive continuation of a project originally funded by the National Human Genome Research Institute's Ethical, Legal, and Social Implications Research Program entitled the "Parent Communication Study" (PCS). The goals of PCS were to determine rates of parent communication about maternal genetic test results for hereditary breast-ovarian cancer risk (BRCA1/2 genes) to minor-age children, and to characterize these decisions and outcomes.
One of the primary motivations for parents to participate in BRCAI/2 testing is to find out about their minor children's risk of developing cancer. However, parents often report feeling distressed and conflicted about sharing this information with their youngsters once it is available. As few parents receive professional guidance in evaluating the potential risks and benefits of disclosure to children, parents may be prone to make ineffective decisions about communication that could lead to adverse psychosocial outcomes.
In order to translate the rapid advances of genetic technologies into the realm of preventive medicine, it is imperative that we explore any perceptions about genetic discrimination that may limit access to genetic cancer risk assessment (GCRA) and consequently to risk appropriate cancer screening and prevention. The state of knowledge and opinions about genetic discrimination and protective legislation among physicians who directly influence access to GCRA is largely unknown.
As our knowledge of the role of genetic and environmental factors in colorectal cancer grows, population screening and prevention efforts can be modified to incorporate this information. The goal of this study is to develop a framework for evaluating the clinical and economic tradeoffs that occur when considering gene-based strategies directed towards identifying persons at increased risk for colon cancer. We propose to use a unique and valuable resource - the Colorectal Cancer Family Registry (Seattle) - to inform our model. The specific aims are as follows:
Thousands of women have been tested for BRCA1/2 mutations to determine whether they harbor an inherited susceptibility to breast and ovarian cancer. Social and behavioral research conducted with this population suggests that communication of positive test results among mutation carriers to their high-risk family members can be an emotional and difficult task. Though genetic counseling protocols recognize the importance of this behavior to help control the spread of hereditary cancer within the kinship, few patient education resources are available to assist in this process.