Guidelines for disclosing genetic information to family members:: From development to use

Guidelines for disclosing genetic information to family members:: From development to use
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DOI:
10.1007/s10689-005-2581-5
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发表时间:
2006-03-01
期刊:
影响因子:
2.2
通讯作者:
Égalité, N
Égalité, N
中科院分区:
医学4区
文献类型:
--
作者:
Godard, B;Hurlimann, T;Égalité, N

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本文介绍了现有的法律的框架,专业指导方针和其他文件有关的条件和程度的遗传信息披露的医生有风险的家庭成员。虽然医生向病人亲属披露遗传信息的义务只在少数法律的案例中得到解决,但法院在某些情况下发现了这种义务。一般来说,未经病人同意,不应允许披露。然而,由于遗传信息的性质,可以预见,在可以进行治疗和预防的情况下也有例外。这种警告病人亲属的义务也得到了一些处理这一问题的专业和政策组织的支持。与沟通和干预计划的实践指南正在出现,为医生提供工具,使他们能够帮助患者与亲属沟通,而不会危及他们的职业责任。由于指南的目的是提高医疗实践的适当性,从而更好地服务于患者的利益,重要的是要确定他们在多大程度上记录了“最佳实践”的标准。这种分析是评估允许向家庭成员披露遗传信息的不同方法的一个重要步骤。
This paper presents the existing legal frameworks, professional guidelines and other documents related to the conditions and extent of the disclosure of genetic information by physicians to at-risk family members. Although the duty of a physician regarding disclosure of genetic information to a patient's relatives has only been addressed by few legal cases, courts have found such a duty under some circumstances. Generally, disclosure should not be permitted without the patient's consent. Yet, due to the nature of genetic information, exceptions are foreseen, where treatment and prevention are available. This duty to warn a patient's relative is also supported by some professional and policy organizations that have addressed the issue. Practice guidelines with a communication and intervention plan are emerging, providing physicians with tools that allow them to assist patients in their communication with relatives without jeopardizing their professional liability. Since guidelines aim to improve the appropriateness of medical practice and consequently to better serve the interests of patients, it is important to determine to what degree they document the 'best practice' standards. Such an analysis is an essential step to evaluate the different approaches permitting the disclosure of genetic information to family members.