Georgetown University
The primary goal of this research is to test a web-based genetic education intervention that is designed to educate men and women from hereditary cancer families about the personal relevance of genetic testing in order to help them male decisions about whether to pursue genetic testing. We will test this intervention against standard care for men and women from hereditary cancer families. The web-based educational intervention includes all of the information typically covered during genetic counseling. As a result, after completing the education intervention, participants can proceed directly to a brief telephone call with a genetic counselor followed by testing if they choose. A baseline survey will be administered prior to randomization and then follow-up surveys will be administered at 1-month and 6-months post-randomization. Primary outcomes will be completion of genetic counseling, uptake of genetic testing, genetic test results and quality of life.
Women who carry a pathogenic BRCA variant (PV) have a lifetime breast cancer risk of 55-70% and a lifetime ovarian cancer risk of 16-45%. Men with a PV are at increased risk for prostate, pancreatic and breast cancer. BRCA testing typically begins with a family member (proband) who is affected with cancer. If a PV is identified, probands are encouraged to communicate this test result with at risk relatives. Unaffected first- and second-degree relatives (FSDR), who are at 50% and 25% risk for carrying the PV, may then pursue genetic counseling and testing for the specific variant identified in…
Inclusion Criteria: * A first- (sibling, adult offspring) or second-degree (aunt/uncle, niece/nephew if at-risk parent is deceased) biological relative of an individual with a recently identified BRCA1 or BRCA2 mutation Exclusion Criteria: * Personal diagnosis of metastatic cancer * Prior genetic testing for hereditary breast/ovarian cancer * Have one or more children who have tested positive for a BRCA1 or BRCA2 mutation * Cannot participate in or understand English * Cannot provide meaningful informed consent
Tailored and interactive web-based education designed to incorporate all aspects of standard genetic counseling followed by a streamlined genetic counseling session with a board-certified genetic counselor.