Institute for Bioethics, Health Policy, and Law, University of Louisville School of Medicine, Louisville, Kentucky, USA.
Genet Med. 2018 Mar;20(3):285-290. doi: 10.1038/gim.2017.257. Epub 2018 Feb 1.
The duty to warn genetically at-risk relatives of patients is one of the most misunderstood legal and ethical issues affecting clinical genetics. The legal doctrines are often associated with three state appellate court cases beginning in the mid-1990s. Since the HIPAA Privacy Rule went into effect in 2003, the duty to warn must be accomplished by warning the patient of the genetic nature of a diagnosed disorder or genetic risk and the necessity of warning at-risk relatives. Health-care providers are neither required nor permitted to warn at-risk relatives without the consent of their patients. Having warnings issued by the patient most closely aligns with traditional ethical principles and the interests of the parties. Physicians and other health-care providers can assist their patients by preparing jargon-free explanations of the genetic risk and offering consultation or referral services. In the future, the need for warnings is less likely to be triggered by diagnoses and more likely to be based on predictive information derived from genome sequencing and other technologies and data sources.
告知有遗传风险的患者亲属的义务是影响临床遗传学的最具误解的法律和伦理问题之一。法律原则通常与始于 20 世纪 90 年代中期的三个州上诉法院案件有关。自 2003 年 HIPAA 隐私规则生效以来，告知义务必须通过警告患者所诊断疾病或遗传风险的遗传性质以及告知有风险亲属的必要性来完成。未经患者同意，医疗保健提供者既不需要也不允许警告有风险的亲属。由患者发出警告最符合传统的伦理原则和各方的利益。医生和其他医疗保健提供者可以通过提供通俗易懂的遗传风险解释，并提供咨询或转介服务，来帮助他们的患者。在未来，发出警告的需求不太可能由诊断引发，而更有可能基于源自基因组测序和其他技术和数据源的预测信息。
