The use of social media has become a ubiquitous form of communication. Little is known about whether social media is used in families to assist with the communication of genetic information. This study aimed to understand if and why individuals use social media to communicate genetic information to at‐risk relatives. Individuals with either a pathogenic variant in a cancer‐predisposing gene or a heterozygous pathogenic variant in an autosomal or X‐linked recessive gene were surveyed about communicating genetic information to their at‐risk relatives and their use of social media to assist this process. Surveys were sent to 323 individuals from a reproductive carrier screening program and 250 individuals from a familial cancer center. The 128 responses (response rate 25.2%) showed that while most participants (79.0%) did not use social media to communicate genetic information, those that did use social media (21.0%) found it to be helpful as it was easy, accessible and allowed individuals to overcome communication barriers. Genetic professionals should be aware that social media is being used by individuals to assist family communication about genetic information and should discuss this method of communication with individuals who are faced with communicating genetic information with their family.

中文翻译：

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关于遗传信息的家庭交流中社交媒体的使用：“我不再和我姐姐说话，但她需要知道”

社交媒体的使用已经成为一种无处不在的交流方式。对于家庭中是否使用社交媒体来协助遗传信息的交流，我们知之甚少。本研究旨在了解个人是否以及为何使用社交媒体向有风险的亲属传达遗传信息。对具有癌症易感基因致病变异或常染色体或 X 连锁隐性基因杂合致病变异的个体进行了调查，了解向其有风险的亲属传达遗传信息以及他们使用社交媒体来协助这一过程。调查发送给来自生殖携带者筛查计划的 323 个人和来自家族性癌症中心的 250 个人。128 个回复（回复率为 25.2%）表明，虽然大多数参与者（79. 0%) 没有使用社交媒体来交流基因信息，那些使用社交媒体的人 (21.0%) 发现它很有帮助，因为它简单、易于访问并允许个人克服沟通障碍。遗传专业人士应该意识到个人正在使用社交媒体来协助家庭关于遗传信息的交流，并且应该与面临与家人交流遗传信息的个人讨论这种交流方法。