School of Public Health and Preventive Medicine, Monash University, Faculty of Medicine, Nursing and Health Sciences, Melbourne, Victoria, Australia
Murdoch Childrens Research Institute, Parkville, Victoria, Australia.
J Med Genet. 2022 Aug;59(8):817-826. doi: 10.1136/jmedgenet-2021-107989. Epub 2021 Sep 20.
In 2019, the Australian life insurance industry introduced a partial moratorium (ban) limiting the use of genetic test results in life insurance underwriting. The moratorium is industry self-regulated and applies only to policies below certain financial limits (eg, $500 000 of death cover).
We surveyed Australian health professionals (HPs) who discuss genetic testing with patients, to assess knowledge of the moratorium; reported patient experiences since its commencement; and HP views regarding regulation of genetic discrimination (GD) in Australia.
Between April and June 2020, 166 eligible HPs responded to the online survey. Of these, 86% were aware of the moratorium, but <50% had attended related training/information sessions. Only 16% answered all knowledge questions correctly, yet 69% believed they had sufficient knowledge to advise patients. Genetics HPs' awareness and knowledge were better than non-genetics HPs' (p<0.05). There was some reported decrease in patients delaying/declining testing after the moratorium's introduction, however, 42% of HPs disagreed that patients were more willing to have testing post-moratorium. Although many (76%) felt the moratorium resolved some GD concerns, most (88%) still have concerns, primarily around self-regulation, financial limits and the moratorium's temporary nature. Almost half (49%) of HPs reported being dissatisfied with the moratorium as a solution to GD. The majority (95%) felt government oversight is required, and 93% felt specific Australian legislation regarding GD is required.
While the current Australian moratorium is considered a step forward, most HPs believe it falls short of an adequate long-term regulatory solution to GD in life insurance.
2019 年，澳大利亚寿险业引入了部分暂停（禁令），限制在寿险承销中使用基因检测结果。该暂停是行业自律的，仅适用于某些财务限制以下的政策（例如，50 万美元的死亡保险）。
我们调查了与患者讨论基因检测的澳大利亚卫生专业人员（HPs），以评估他们对暂停的了解；报告自暂停开始以来患者的经历；以及 HPs 对澳大利亚基因歧视（GD）监管的看法。
在 2020 年 4 月至 6 月期间，有 166 名符合条件的 HPs 回答了在线调查。其中，86%的人知道暂停，但是不到 50%的人参加过相关的培训/信息会议。只有 16%的人正确回答了所有的知识问题，但 69%的人认为他们有足够的知识来为患者提供建议。遗传 HPs 的意识和知识要好于非遗传 HPs（p<0.05）。自暂停以来，一些患者延迟/拒绝检测的情况有所减少，但是 42%的 HPs 不同意患者在暂停后更愿意接受检测。尽管许多人（76%）认为暂停解决了一些 GD 问题，但大多数人（88%）仍有顾虑，主要是围绕自我监管、财务限制和暂停的临时性质。近一半（49%）的 HPs 报告对暂停作为 GD 的解决方案感到不满。大多数人（95%）认为需要政府监督，并且 93%的人认为需要针对 GD 的特定澳大利亚立法。
虽然当前的澳大利亚暂停被认为是向前迈出的一步，但大多数 HPs 认为，它不足以作为解决寿险中 GD 的长期监管解决方案。
