Introduction Identification of one’s status as a BRCA1/2 pathogenic variant carrier often marks the start of navigating challenging decisions related to cancer risk management and result disclosure. Carriers report unmet informational needs, but studies have yet to explore the specific aspects of and how best to fulfill these needs. This study aims to explore the informational needs of BRCA1/2 pathogenic variant carriers in Asia to inform for the design of educational materials to support risk management decision-making. Methods Semi-structured in-depth interviews were conducted with two male and 22 female English-speaking BRCA1/2 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. Results Four 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. Discussion Participants 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.

中文翻译：

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亚洲BRCA1和BRCA2致病变异携带者检测后信息需求的深入探讨

引言 确定一个人作为 BRCA1/2 致病性变异携带者的身份通常标志着开始进行与癌症风险管理和结果披露相关的具有挑战性的决策。运营商报告未满足的信息需求，但研究尚未探索这些需求的具体方面以及如何最好地满足这些需求。本研究旨在探索亚洲 BRCA1/2 致病性变异携带者的信息需求，为设计教育材料以支持风险管理决策提供信息。方法 对通过新加坡国家癌症中心癌症遗传学服务确定的两名男性和 22 名女性讲英语的 BRCA1/2 致病性变异携带者进行半结构化深度访谈，年龄在 29-66 岁之间。采用带有主题分析的扎根理论方法来提取主要主题。结果 确定了四个主题：（i）主动在线信息搜索行为（ii）个性化信息需求；㈢ 分享成果方面的挑战；(iv) 缺乏遗传意识。讨论参与者强调了分享他们的结果所带来的挑战，这些挑战源于重要的结果后信息需求，这已体现为积极的在线信息寻求行为。他们渴望在线信息源，其中的内容是个性化的、可靠的和本地化的。参与者预见了在线资源提高遗传意识的潜力。这表明使用文化定制的在线遗传资源来促进结果披露，