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Disclosing genetic information to family members without consent: Five Australian case studies.
European Journal of Medical Genetics ( IF 1.9 ) Pub Date : 2020-08-14 , DOI: 10.1016/j.ejmg.2020.104035
Jane Tiller 1 , Gemma Bilkey 2 , Rebecca Macintosh 3 , Sarah O'Sullivan 4 , Stephanie Groube 5 , Marili Palover 6 , Nicholas Pachter 4 , Mark Rothstein 7 , Paul Lacaze 1 , Margaret Otlowski 8
Affiliation  

Genetic risk information is relevant to individual patients and also their blood relatives. Health practitioners (HPs) routinely advise patients of the importance of sharing genetic information with family members, especially for clinically actionable conditions where prevention is possible. However, some patients refuse to share genetic results with at-risk relatives, and HPs must choose whether to use or disclose genetic information without consent. This requires an understanding of their legal and ethical obligations, which research shows many HPs do not have. A recent UK case held that HPs have a duty to a patient's relatives where there is a proximate relationship, to conduct a balancing exercise of the benefit of disclosure of the genetic risk information to the relative against the interest of the patient in maintaining confidentiality. In Australia, there is currently no legal duty to disclose genetic information to a patient's at-risk relatives, but there are laws and guidelines governing unconsented use/disclosure of genetic information. These laws are inconsistent across different Australian states and health contexts, requiring greater harmonisation.

Here we provide an up-to-date and clinically accessible resource summarising the laws applying to HPs across Australia, and outline five Australian case studies which have arisen in clinical genetics services, regarding the disclosure of genetic results to relatives without consent. The issues addressed here are relevant to any Australian HP with access to genetic information, as well as HPs and policy-makers in other jurisdictions considering these issues.



中文翻译:

未经同意向家庭成员披露遗传信息:五个澳大利亚案例研究。

遗传风险信息与单个患者及其血亲相关。卫生从业人员(HP)经常建议患者与家人共享遗传信息的重要性,尤其是对于可能预防的临床可行疾病。但是,有些患者拒绝与高危亲戚分享遗传结果,HP必须选择未经同意即使用还是披露遗传信息。这需要了解他们的法律和道德义务,研究表明许多惠普公司没有这些义务。英国最近的一宗案件认为,在有近亲关系的情况下,HP对患者的亲属有责任,在平衡遗传风险信息给亲属的利益与维护患者利益之间进行平衡。在澳大利亚,当前没有法律义务向患者的高危亲属披露遗传信息,但是有法律和指南规定未经许可使用/披露遗传信息。这些法律在澳大利亚不同州和健康状况之间不一致,需要进行更大的协调。

在这里,我们提供了最新的且可在临床上使用的资源,概述了适用于澳大利亚全国HP的法律,并概述了在临床遗传学服务中出现的五个澳大利亚案例研究,涉及未经同意将遗传结果披露给亲属的情况。此处解决的问题与任何获得遗传信息的澳大利亚惠普以及考虑这些问题的其他司法管辖区的惠普和政策制定者有关。

更新日期:2020-08-14
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