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. ? ? ?

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Research Project (R01)
Project #
5R01HG002686-05
Application #
7500839
Study Section
Special Emphasis Panel (ZRG1-GGG-J (02))
Program Officer
Lockhart, Nicole C
Project Start
2003-07-01
Project End
2010-08-31
Budget Start
2008-09-01
Budget End
2009-08-31
Support Year
5
Fiscal Year
2008
Total Cost
$560,347
Indirect Cost
Name
Georgetown University
Department
Internal Medicine/Medicine
Type
Schools of Medicine
DUNS #
049515844
City
Washington
State
DC
Country
United States
Zip Code
20057
Hamilton, Jada G; Mays, Darren; DeMarco, Tiffani et al. (2016) Modeling the dyadic effects of parenting, stress, and coping on parent-child communication in families tested for hereditary breast-ovarian cancer risk. Fam Cancer 15:513-22
O'Neill, Suzanne C; Mays, Darren; Patenaude, Andrea Farkas et al. (2015) Women's concerns about the emotional impact of awareness of heritable breast cancer risk and its implications for their children. J Community Genet 6:55-62
Mays, Darren; DeMarco, Tiffani A; Luta, George et al. (2014) Distress and the parenting dynamic among BRCA1/2 tested mothers and their partners. Health Psychol 33:765-73
Farkas Patenaude, Andrea; DeMarco, Tiffani A; Peshkin, Beth N et al. (2013) Talking to children about maternal BRCA1/2 genetic test results: a qualitative study of parental perceptions and advice. J Genet Couns 22:303-14
Tercyak, Kenneth P; Mays, Darren; DeMarco, Tiffani A et al. (2013) Decisional outcomes of maternal disclosure of BRCA1/2 genetic test results to children. Cancer Epidemiol Biomarkers Prev 22:1260-6
Tercyak, Kenneth P; Mays, Darren; Johnson, Suzanne Bennett et al. (2013) Psychometric properties of the Pediatric Testing Attitudes Scale-Diabetes (P-TAS-D) for parents of children undergoing predictive risk screening. Pediatr Diabetes 14:602-10
Tercyak, Kenneth P; Swartling, Ulrica; Mays, Darren et al. (2013) Behavioral Science Research Informs Bioethical Issues in the Conduct of Large-Scale Studies of Children's Disease Risk. AJOB Prim Res 4:4-14
Sharff, McKane E; DeMarco, Tiffani A; Mays, Darren et al. (2012) Parenting through genetic uncertainty: themes in the disclosure of breast cancer risk information to children. Genet Test Mol Biomarkers 16:376-82
Mays, Darren; Sharff, McKane E; DeMarco, Tiffani A et al. (2012) Outcomes of a systems-level intervention offering breast cancer risk assessments to low-income underserved women. Fam Cancer 11:493-502
Tercyak, Kenneth P; Mays, Darren; DeMarco, Tiffani A et al. (2012) Results of an online community needs assessment for psychoeducational interventions among partners of hereditary breast cancer previvors and survivors. J Med Internet Res 14:e15

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