论我国基因信息不知情权的确立

On the Establishment of the Right to Not Know about Genetic Information in China

基因信息对健康状况具有强烈的预测性,出于诸种原因当事人未必想知晓基因信息。为充分尊重自我决定权,比较法上承认权利人享有基因信息不知情权。基因信息不知情权指权利人有权预先决定是否接受基因信息的披露,其核心要义为"知情拒绝权"。基因信息不知情权旨在保障权利人对基因信息的自主控制,在我国隐私权与个人信息区分规制的立法模式下,将其归入信息自决权更为妥当。传统的知情同意原则在面对基因检测结果的不确定性时显得捉襟见肘,为保护个人免受非自愿性信息的侵害,我国应确立基因信息不知情权,以合理平衡基因科技发展与人格尊严保护。具体条文安排上,正在制定的"个人信息保护法"为基因信息不知情权的合法化提供了理想的制度路径。基因信息不知情权的设立可能与其他权益存在冲突,需审慎对待。

Genetic information is highly predictive of health,but people may not want to know it for various reasons.In order to fully respect the right to self-determination,the comparative law recognizes that the right holder has the right not to know genetic information.The right not to know means that the right holder has the right to decide whether to accept the disclosure of genetic information in advance,and its core meaning is"the right to refuse knowledge".The right not to know aims to ensure the right holder’s autonomous control over genetic information,and it is more appropriate to classify it as the right to self-determination of information under the legislative model of separate regulation of the right to privacy and personal information in China.The traditional principle of informed consent is stretched when faced with the uncertainty of genetic testing results.In order to protect individuals from the damage of non-voluntary information,we should establish the right not to know,so as to reasonably balance the development of genetic technology and the protection of personal dignity.In terms of specific provisions,the"Personal Information Protection Law"that is being formulated provides an ideal institutional path for the legalization of the right not to know.The establishment of the right not to know may conflict with other rights,which should be treated with caution.