论遗传病的告知义务与知晓权

On the Duty to Inform and the Right to Know about Genetic Diseases

遗传病具有基因的携带和传承性,在直系亲属之间具有相对明确的可预测性,借助于现代科技可提前预防其遗传甚至医疗。遗传病的知晓权对个人的自决权实现具有直接影响,医方在遗传病场合履行以主动告知为主、被动告知为辅的充分告知义务具有必要性和可行性。基于患者隐私权的维护与告知价值的实现之平衡,应当合理降低医方在对遗传病患者外之这一第三者的告知义务上的风险,并允许医方告知义务转移给遗传病患者。鼓励家庭内部告知应当以维护家庭伦理和自愿为基础,以此作为辅助告知的实现路径。

Genetic disease has the characteristics of carrying and passing on genes.The degree of predictability is relatively clear among immediate relatives,and with the help of modern technology it can be prevented in advance and even be treated.The right to know about genetic diseases has a direct influence on the realization of self-deter-mination right.It is necessary and credible for the medical party to fulfill the full duty of active notification and pas-sive notification.Based on the balance between the maintenance of patients'privacy rights and the realization of the value of notification,the risk of the medical party's obligation to inform a third party other than the genetic patient should be reasonably reduced,and allow the medical party to transfer the notification obligation to the genetic pa-tient.The encouragement of internal family notification should be based on the maintenance of family ethics and vol-untariness as the realization path of auxiliary notification.