Generation after generation: Exploring the psychological impact of providing genetic services through a cascading approach

作者：Hadley Donald W^*; Ashida Sato; Jenkins Jean F; Martin Jean C; Calzone Kathleen A; Kuhn Natalia R; McBride Colleen M; Kirsch Ilan R; Koehly Laura M

来源：Genetics in Medicine, 2010, 12(12): 808-815.

DOI：10.1097/GIM.0b013e3181f69dbb

• genetic services
• cascade genetic testing
• social influence
• genetic test related distress and worry
• HNPCC/Lynch syndrome

Purpose: The provision of genetic services often occurs in a cascading fashion within families experiencing inherited diseases. This study examines whether previous family experiences with genetic services influences levels of psychological well-being of family members receiving services later. Methods: Two hundred ninety-seven persons from 38 families with Lynch syndrome completed questionnaires before receiving genetic services. Baseline levels of test-related distress, depressive symptoms, and cancer worries were assessed in relationship to the (1) amount of time elapsed since services were provided to the index case and (2) generation of the family member relative to the index case. Results: Family members in the same generation as the index case experienced significant increases in test-related distress (P = 0.003) and cancer worry (P = 0.001) with increasing time between receipt of genetic test results by the index case and provision of services to family members. Change in the number of depressive symptoms was not significant (P = 0.17). Conclusion: The provision of genetic services through a cascading approach significantly increases distress and worry among family members within the same generation as the index case who receive services at increasingly distant time intervals. Additional research is needed to explore social influences after the introduction of genetic services. Genet Med 2010:12(12):808-815.

• 出版日期2010-12