Research on the UNESCO's Draft Declaration on the Human Genome and Human Rights

这项研究的目的是根据联合国教科文组织的《人类基因组与人权世界宣言》，对人类基因组研究及其应用的伦理、法律和社会影响进行实际和建设性的分析。1)对联合国教科文组织国际生物伦理委员会制定的《人类基因组宣言》草案进行问卷调查。通过这个问卷，我们收集了相关领域研究者的意见和评论。问卷的回答揭示了以下几点：(1)除了一些有争议的点外，普遍希望通过这样的宣言；(2)日本需要一些国家规范措施，包括一些立法；(3)应保障研究的自由，同时限制违背人类尊严的研究和应用；(4)应禁止生殖性克隆人。2)我们的研究包括尝试对《宣言》的正确解释，指出与《宣言》有关的各种问题，以及寻找国家监管的可能性。每个小组成员分别对待《宣言》的诞生过程和逐条分析；与基因研究和测试有关的民法问题；《宣言》在基因治疗和癌症检测中的临床应用问题；《宣言》的后续阶段；以知识产权的方式保护遗传研究成果；欧洲背景下人类基因组研究的问题。收集了一些国家法律法规的案文以及与《宣言》有关的报告，以便制作这些案文的表格。目前正在编制一个数据库。

The purpose of this research was, based on the UNESCO's Universal Declaration on the Human Genome and Human Rights, a practical and constructive analysis on ethical, legal and social implications regarding the research on the human genome and its applications.1) An investigation is done, using a questionnaire on the draft Declaration on the human genome established by the International Bioethics Committee of the UNESCO.Through this questionnaire, we collected opinions and comments of researchers of the relevant fields. The answers to the questionnaire reveals the following points (1) besides some controversial points, the adoption of a declaration of this kind is generally desired, (2) Japan needs some national normative measures, including some legislation, (3) the freedom research should be guaranteed, while the research and the applications contrary to the human dignity are to be restricted, and (4) the reproductive human cloning shall be prohibited.2) Our research consisted of trying a right interpretation of the Declaration, of pointing out various issues regarding the Declaration as well as of searching a possibility of national regulation. Each member of the team treated respectively the process of the birth and the article by article analysis of the Declaration ; civil law issues with respect to genetic research and tests ; questions concerning clinical application of the Declaration in genetic therapy and cancer detection ; follow-up stage of the Declaration ; Protection of the results of genetic research by way of intellectual property ; issues of human genome research in the European context. Number of texts of national laws and regulations as well as reports relating to the Declaration are collected so as to make a table of these texts. A data-base is now on preparation.