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二十世纪八十年代以来,由于人体基因检测技术发展迅速,人类已经能够对很多不可治愈的疾病提前做出预测,由此给被检测者造成很大的心理和生理损害。有鉴于此,继患者的知情权之后,西方学术界又提出了不知情权,即基因受测者对于自身基因信息不知情的权利。该权利主要通过受测者本人在测试前明确的意思表示来体现,并以医生进行全面的咨询告知为前提,被称为知情的不知情权。近二十年来,多国立法逐步确认了不知情权,并禁止用人单位和保险公司要求劳动者和被保险人实施基因检测或提供基因信息,也严格禁止对于婴幼儿的不可治愈疾病的检测。近年来,我国基因治疗技术发展迅猛,但立法上几近于空白,法律应当有所应对。
Since the eighties of the 20th century, due to the rapid development of human genetic testing technology, humans have been able to predict many incurable diseases in advance, thereby causing great mental and physical damage to the subjects. In view of this, following the patient’s right to know, Western academics also proposed the right to know, that is, genetic test subjects for their own genetic information without the right to know. This right is mainly manifested by the testees themselves clearly expressed before the test, and is based on the doctor’s full consultation and notification as the premise, known as the right to know the unknowing. In the past 20 years, multinational legislation has gradually cleared the right of ignorance, and has prohibited employers and insurers from requiring laborers and insureds to carry out genetic tests or provide genetic information. It also strictly forbids the testing of incurable diseases in infants and young children. In recent years, the technology of gene therapy in our country has developed rapidly, but the legislation is almost blank, and the law should respond.