Grant Number:	5R01CA081867-03 Interpret this number
Primary Investigator:	Daly, Mary
Organization:	Fox Chase Cancer Center
Project Title:	Communicating Genetic Test Results to the Family
Fiscal Year:	2001

Recent advances in molecular genetics have identified a number of genes associated with inherited susceptibility to breast and ovarian cancer. Isolation of hereditary cancer genes will provide precise biomarkers of cancer susceptibility for clinical use in determining an individual's risk for cancer. The responsibility for sharing genetic results within the family often falls upon the proband who may not have a sophisticated genetic background and may lack preparation for this role. To date, this issue has not been addressed in the traditional genetic counseling model. The proposed study will expand the scope of traditional genetic counseling by helping women who are undergoing testing for mutations in the BRCA1 and/or BRCA2 genes effectively disseminate their test tests to family member. Specifically, this study proposes to test targeted communication strategy for the dissemination and interpretation of genetic test results within high risk families. Individuals receiving genetic test results will receive a standard education and counseling protocol and will be randomized to an intervention or control arm. Those in the intervention group will receive a structured Six-step Communication strategy which will provide the proband with skills for communicating her genetic test results to her family. The communication strategy based on the work of Robert Buckman, will help probands determine who to tell, what to tell and how to tell family members genetic test information. The intervention is designed to overcome attitudinal and perceptual barriers to effectively sharing genetic test results with family members. We hypothesize that probands who receive genetics counseling enhanced by the communication guide will experience less difficulty and distress in communicating genetic test information to their family than those who receive the standard genetic counseling alone. Also, we expect that family members of probands in the intervention arm will experience enhanced satisfaction with the information received, increased comprehension of genetic risk, and will be more likely to seek cancer risk counseling for themselves. If effective, this protocol will provide a model for risk communication within families facing genetic risk for a wide range of diseases.




Preparing individuals to communicate genetic test results to their relatives: report of a randomized control trial.
Authors: Montgomery S.V. , Barsevick A.M. , Egleston B.L. , Bingler R. , Ruth K. , Miller S.M. , Malick J. , Cescon T.P. , Daly M.B. .
Source: Familial cancer, 2013 Sep; 12(3), p. 537-46.
PMID: 23420550
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