Historical, Philosophical and Religious studies, Umeå University, Umeå, Sweden.
Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Flanders, Belgium.
BMJ Open. 2024 Nov 27;14(11):e089237. doi: 10.1136/bmjopen-2024-089237.
Hereditary cancer has implications not only for patients but also for their at-risk relatives (ARRs). In current clinical practice, risk disclosure to ARRs involves collaboration between patients and healthcare providers (HCPs). However, the specific responsibilities of each party are intertwined and at times unclear. In this study, we explored public attitudes regarding moral and legal responsibilities to disclose familial risk information to uninformed ARRs.
In an online cross-sectional survey, participants were prompted with a hypothetical scenario where a gender-neutral patient learnt about their familial risk of colorectal cancer. The patient was advised to regularly undergo colonoscopy screening, and this recommendation was extended to both their siblings and cousins. While the patient informed their siblings, they had not spoken to their cousins in 20 years and did not want to contact them. The survey assessed respondents' views on the patient's and HCPs' ethical responsibility and legal obligation to inform the cousins (ARRs).
A random selection of 1800 Swedish citizens 18-74 years of age were invited. Out of those, 914 (51%) completed the questionnaire.
In total, 75% believed that HCPs had a moral responsibility to inform ARRs, while 59% ascribed this moral responsibility to the patient. When asked about the ultimate responsibility for risk disclosure to ARRs, 71% placed this responsibility with HCPs. Additionally, 66% believed that HCPs should have a legal obligation to inform ARRs, while only 21% thought the patient should have such an obligation. When prompted about a scenario in which the patient actively opposed risk disclosure, a majority believed that HCPs should still inform the ARRs.
Our study indicates that the Swedish public ascribes moral responsibility for informing ARRs to both the patient and HCPs. However, contrary to current practice, they believe HCPs hold the ultimate responsibility. The majority of respondents support disclosure even without patient consent.
遗传性癌症不仅对患者而且对其有风险的亲属（ARRs）有影响。在当前的临床实践中，向 ARRs 披露风险涉及患者和医疗保健提供者（HCPs）之间的合作。然而，双方的具体责任相互交织，有时并不明确。在这项研究中，我们探讨了公众对向不知情的 ARRs 披露家族风险信息的道德和法律责任的态度。
在一项在线横断面调查中，参与者被提示一个假设情景，即一名性别中立的患者了解到自己患结直肠癌的家族风险。患者被建议定期进行结肠镜检查筛查，并且建议也适用于他们的兄弟姐妹和表亲。虽然患者告知了他们的兄弟姐妹，但他们已经 20 年没有与表亲联系，也不想与他们联系。调查评估了受访者对患者和 HCPs 告知表亲（ARRs）的道德责任和法律义务的看法。
邀请了 1800 名年龄在 18-74 岁之间的瑞典公民参加随机选择。其中 914 人（51%）完成了问卷。
总共有 75%的人认为 HCPs 有向 ARRs 告知的道德责任，而 59%的人认为患者有这种道德责任。当被问及向 ARRs 披露风险的最终责任时，71%的人将责任归咎于 HCPs。此外，66%的人认为 HCPs 应该有向 ARRs 告知的法律义务，而只有 21%的人认为患者应该有这种义务。当被提示患者积极反对风险披露的情景时，大多数人认为 HCPs 仍应告知 ARRs。
我们的研究表明，瑞典公众将向 ARRs 告知的道德责任归咎于患者和 HCPs。然而，与当前的实践相反，他们认为 HCPs 承担最终责任。大多数受访者支持即使没有患者同意也进行披露。
