Developing new resources to improve care for families who face difficult genetic testing decisions
Lynch syndrome is one of the leading causes of hereditary cancers (e.g., colorectal and endometrial cancer), which can be prevented or treated with active screening and early diagnosis. For people with Lynch syndrome, these cancers are more likely to develop at earlier ages, often before the age of 50.
Cascade genetic testing for blood relatives of patients with Lynch syndrome is cost-effective but underutilized due to both practical and socio-cognitive barriers. Increasing pre-test genetic counseling and testing in this population will have substantial public health impact by promoting awareness and identification of Lynch syndrome and subsequently help reduce cancer morbidity and mortality.
Dr. Yan is learning from people who had genetic testing for Lynch syndrome and their relatives to develop new resources for improving decision making. Funded by the National Cancer Institute, this research aims to identify barriers and facilitators to pre-test genetic counseling and testing among tested and untested relatives; develop a theory-based behavioral intervention to increase pre-test genetic counseling and testing uptake in this population; and evaluate and optimize feasibility of the trial methods and the behavioral intervention to prepare for a fully powered randomized controlled trial and explore the intervention’s preliminary efficacy.
Principal Investigator: Haoyang Yan, Ph.D.