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知情同意不仅是生命伦理的重要原则,更是基因研究受试者所享有的基本权利,这已得到普遍认同;但对之由于缺乏法律的明确规定,导致实务中侵犯受试者基因知情同意权的现象时有发生,且侵权发生后受害者无法得到法律的有效救济。与传统的患者知情同意权相比,基因知情同意权具有权利主体的多重性、权利内容的广泛性、权利较多的受限制性及侵权责任的严格性等特征;只有全面认识并在科技发展中不断完善基因知情同意权,才能通过立法有效保障受试者的基因知情同意权,取得科技与伦理的共赢。
Informed consent is not only an important principle of bioethics, but also a basic right enjoyed by the subjects of genetic research, which has been generally accepted. However, due to the lack of explicit stipulations of law, it violates the informed consent of the subjects in practice The phenomenon occurs from time to time, and after the infringement victims can not get legal relief. Compared with the traditional informed consent of patients, genetic informed consent has the characteristics of the multiplicity of rights, the extensiveness of rights, the limited rights and the strictness of tort liability. Only with a comprehensive understanding and scientific development In the continuous improvement of genetic informed consent, in order to pass the legislation to effectively protect the subject’s genetic informed consent, access to science and technology and ethics win-win situation.