An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia

This study aims to explore the informational needs ofBRCA1/2 pathogenic variant carriers in Asia to inform for the design of educational materials to support risk management decision-making.MethodsSemi-structured in-depth interviews were conducted with two male and 22 female English-speakingBRCA1/2 pathogenic variant carriers, aged 29 –66 years, identified through the Cancer Genetics Service at the National Cancer Centre Singapore. A grounded theory approach with thematic analysis was undertaken to extract dominant themes.ResultsFour themes were identified: (i) proactive online information seeking behaviors (ii) personalized informational needs; (iii) challenges in sharing the results; and (iv) lack of genetic awareness.DiscussionParticipants highlight challenges with sharing their result arising from significant post-result informational needs, which have manifested into proactive online information-seeking behaviors. They desire for an online source of information, where content is personalized, reliable and local. Participants foresee the potential of an online resource to raise genetic awareness. This suggests the use of a culturally tailored online-based genetics resource, to promote result disclosure, empower risk-management decisions and raise genetic literacy rates.

Source: Hereditary Cancer in Clinical Practice - October 23, 2020 Category: Cancer & Oncology Source Type: research