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

这项研究的目的是以教科文组织《世界人类基因组与人权宣言》为基础，对人类基因组研究及其应用的伦理、法律和社会影响进行务实和建设性的分析1)使用联合国教科文组织国际生物伦理委员会制定的关于人类基因组宣言草案的问卷进行调查，通过这份问卷，我们收集了相关领域研究人员的意见和评论。对问卷的回答揭示了以下几点：(1)除了一些有争议的问题外，普遍希望通过一项此类宣言；(2)日本需要一些国家的规范性措施，包括一些立法；(3)应保障研究的自由，但应限制违背人的尊严的研究和应用；(4)应禁止生殖性克隆人。2)我们的研究包括试图正确解释该宣言，指出与该宣言有关的各种问题，以及探索国家监管的可能性。小组的每个成员分别讨论了分娩过程和对《宣言》的逐条分析；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；通过知识产权保护基因研究成果；欧洲范围内的人类基因组研究问题。收集了国家法律和条例的若干案文以及与《宣言》有关的报告，以便编制这些案文的表格。目前正在筹备一个数据库。

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.