Parent Communication of BRCA1/2 Test Results to Children

点击翻译按钮获取中文摘要

DESCRIPTION (provided by applicant): 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. Our work under the original grant generated several novel insights into parents' decision making, including its processes, correlates, predictors, and short-term effects. Of importance is the knowledge gained that tested mothers' decisions are personal and guided by their values. For some, disclosing information about genetic test results to children is viewed in relation to maintaining open lines of family communication. For others, not disclosing information is viewed in relation to protecting children against worry and stress. Common to both scenarios is a rapid decision making process that takes place in the absence of specific guidance, education, and decision support about the potential risks and benefits of disclosure and nondisclosure to children under various conditions (e.g., personal and family cancer history, maternal carrier status, child gender and cognitive maturity). We believe the next step in our line of research is to begin to assist parents in making more effective and informed decisions about communication which may lead to better outcomes. To accomplish this aim, our experienced and multidisciplinary team plans to develop and evaluate a communication decision aid for mothers in PCS II. We will do this in the context of a multisite randomized controlled trial. The primary outcomes are decision conflict and satisfaction; secondary outcomes include rates of disclosure to children and parent-child psychosocial well-being. Mothers participating in pretest genetic counseling and testing for BRCA1/2 mutations will be randomly allocated to an intervention condition consisting of a theoretically-grounded decision aid for decision support or to a comparison condition; intervention takes place after counseling but prior to mothers learning about their genetic test results. All participants will be followed for up to 6-months after post-test counseling. PCS II will offer key insights into how to assist mothers with sensitive decisions about communicating cancer genetic test results to young family members. As predictive genetic testing for other adult-onset diseases becomes more widespread, greater numbers of parents will face similar decisions. Findings generated in this area offer a new paradigm within which to view and understand the psychosocial outcomes of predictive testing among tested parents and their nontested children.