Cancer Control Research5R01CA081867-09
Daly, Mary B.
COMMUNICATING GENETIC TEST RESULTS TO THE FAMILY
DESCRIPTION: (provided by applicant) The recent isolation of hereditary cancer genes will provide precise biomarkers of cancer susceptibility for clinical use in determining an individual's risk for cancer. These biomarkers are unique because they not only define risk for an individual, but for their family members as well. We have found that relatives with whom genetic test information is shared often do not understand the meaning of the test result and are not able to formulate appropriate risk management strategies for themselves. The current study is targeted directly to the at-risk relatives of individuals receiving informative BRCA results, i.e., true positive or true negative test results, to help prepare the relatives to receive and understand the significance of the genetic information for their own health. The main goal is to create, deliver and evaluate a set of support materials that will complement the information received directly from the proband to enhance the communication of genetic risk information. Based on the Common Sense Model of Health Behavior, this complementary intervention will be compared to the standard of care, in which test results are communicated by the proband undergoing testing. Primary outcome measures will include understanding and interpretation, confidence in coping with, and behavioral response to the genetic risk information shared. We have chosen to focus on those families with true positive or negative test results because this information may have immediate clinical management consequences for the relatives, and because it is in keeping with the mission of the cancer genetic counselor to extend their reach to additional family members at risk for an inherited condition. In addition this work will provide an opportunity to explore a set of variables which may mediate the comprehension and response to the information shared within the family. Our immediate goal is to test a theory-driven intervention in a well characterized setting. Our long-term goal is both to advance the field of cancer communication science and to create a bridge to the development of practice guidelines and the diffusion of best practice to the genetic counseling community.