Exploring psychological responses to genetic testing for Lynch Syndrome within the family context

• Published in: Psycho-oncology (Chichester, England) Vol. 23; no. 11; pp. 1292 - 1299
• Main Authors: Eliezer, Dina, Hadley, Donald W., Koehly, Laura M.
• Format: Journal Article
• Language: English
• Published: England Blackwell Publishing Ltd 01.11.2014; Wiley Subscription Services, Inc
• Subjects: Adolescent; Adult; Aged; Anxiety - psychology; Cancer; Carriers; Colorectal cancer; Colorectal Neoplasms, Hereditary Nonpolyposis - genetics; Colorectal Neoplasms, Hereditary Nonpolyposis - psychology; Depression; Depression - psychology; Extended family; Family; Family - psychology; Female; Genetic counseling; Genetic disorders; Genetic Predisposition to Disease - psychology; Genetic Testing; Heterozygote; Humans; Lynch Snydrome; Male; Mental depression; Middle Aged; Mutation; Oncology; Psychological aspects; Psychological distress; Public domain; Relatives; Stress, Psychological - psychology; Susceptibility; Young Adult; United States > US; Depression; Family; Oncology; Genetic testing; Lynch Snydrome; Cancer
• ISSN: 1057-9249; 1099-1611; 1099-1611
• DOI: 10.1002/pon.3551

Objective Genetic testing for hereditary cancer susceptibility syndromes is a family‐centered process. Nonetheless, little research has explored how the family context affects psychological responses to genetic testing. We examine how personal test results and the test results of immediate and extended family members shape responses to genetic testing. Methods Individuals at risk of carrying a mutation associated with an inherited cancer susceptibility syndrome (Lynch syndrome) received genetic testing. Six months after receiving their results, participants reported on cancer distress, cancer worry, and depressive symptoms. Results Among mutation carriers for Lynch syndrome, the higher the proportion of carriers in their immediate family, the less cancer worry and distress they reported. In contrast, mutation carriers and non‐carriers with a high proportion of carriers in their immediate family and mutation carriers with a high proportion of carriers in their extended family were at elevated risk for clinically significant levels of depressive symptoms. Conclusion Personal test results alone are not highly predictive of psychological outcomes. Instead, the interaction between personal and family test results, or in some cases, family test results alone, predict key psychological outcomes. The current research has important implications for genetic counseling and intervention efforts. Published 2014. This article is a U.S. Government work and is in the public domain in the USA.