BACKGROUND When a genetic mutation is identified in a family member (proband), internationally, it is usually the proband's or another responsible family member's role to disclose the information to at-risk relatives. However, both active and passive non-disclosure in families occurs: choosing not to communicate the information or failing to communicate the information despite intention to do so, respectively. The ethical obligations to prevent harm to at-risk relatives and promote the duty of care by genetic health professionals (GHPs) is in conflict with Privacy laws and professional regulations that prohibits disclosure of information to a third party without the consent of the proband (duty of confidentiality). In New South Wales (NSW), Australia, amendments to Privacy legislation permits such disclosure to living genetic relatives with the process defined under guidelines although there is no legal duty to warn. This study assessed NSW GHP's awareness and experience of the legislation and guidelines. METHODS An online survey collected demographics; theoretical knowledge; clinical scenarios to assess application knowledge; attitudes; confidence; experience with active non-disclosure. A link to correct answers was provided after completion. Knowledge scores above the median for non-parametric data or above the mean for parametric data were classified as 'good' or 'poor'. Chi square tests assessed associations between confidence and knowledge scores. RESULTS While many of the 37 participants reported reading the guidelines, there was limited awareness of their scope and clinical application; that there is no legal duty to warn; and that the threat does not need to be imminent to warrant disclosure. No association between confidence and 'good' theoretical or applied clinical knowledge was identified. Uncertainty of their professional responsibility was identified and in the several case examples of active non-disclosure that were reported this uncertainty reflected the need for further understanding of the guidelines in regard to the processes required before disclosure was initiated. CONCLUSIONS There is a need for further education and training about the guidelines associated with the legislation that would be relevant to support disclosure. The findings may inform future strategies to support introduction of policy changes in other jurisdictions where similar regulatory regimes are introduced.

中文翻译：

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未经同意向遗传亲属披露-澳大利亚遗传专业人员对健康隐私法的了解。

背景技术当在家庭成员（先证者）中识别出遗传突变时，在国际上，通常将先证者或另一负责任的家庭成员的角色公开给处于危险中的亲属。但是，家庭中的主动和被动公开都发生了：分别选择不交流信息或尽管有意却没有交流信息。防止对处于危险中的亲人造成伤害并促进遗传健康专业人员（GHP）履行护理义务的道德义务与隐私权法律和专业法规相抵触，后者禁止未经先证者同意而将信息泄露给第三方（义务）保密）。在澳大利亚新南威尔士州（NSW），隐私立法的修正案允许按照准则规定的程序向活着的遗传亲属披露此类信息，但没有警告的法律义务。这项研究评估了新南威尔士州GHP对法律和准则的认识和经验。方法在线调查收集了人口统计资料；理论知识；评估应用知识的临床方案；态度; 置信度; 有主动保密的经验。完成后提供了正确答案的链接。对于非参数数据，知识得分高于中位数；对于参数数据，知识得分高于平均值，则分为“好”或“差”。卡方检验评估了信心和知识得分之间的关​​联。结果虽然37名参与者中有许多人报告已阅读指南，对它们的范围和临床应用知之甚少；没有警告的法律义务；并且不必立即威胁就可以公开。在信心和“良好”的理论或应用临床知识之间未发现关联。确定了其职业责任的不确定性，在举报的一些主动不公开的案例中，这种不确定性反映了在启动披露之前需要进一步了解有关所需程序的准则的必要性。结论有必要对与立法相关的指导方针进行进一步的教育和培训，这些指导方针与支持公开有关。