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

本研究的目的是以联合国教科文组织《世界人类基因组与人权宣言》为依据，对人类基因组研究及其应用所涉及的伦理、法律的和社会问题进行建设性的分析。我们收集了相关领域研究人员的意见和评论。对调查问卷的答复表明了以下几点：（1）除了一些有争议的问题外，普遍希望通过这样一项宣言;（2）日本需要一些国家规范措施，包括一些立法;（3）应保障研究自由，同时限制违背人类尊严的研究和应用，（4）禁止人的生殖性克隆。2）我们的研究包括对《宣言》的正确解释，指出与《宣言》有关的各种问题，以及寻找国家管制的可能性。小组的每一位成员分别讨论了出生过程和对《宣言》的逐条分析;与遗传研究和试验有关的民法问题;《宣言》在遗传治疗和癌症检测方面的临床应用问题;《宣言》的后续阶段;通过知识产权保护遗传研究成果;人类基因组研究在欧洲范围内的问题。收集了与《宣言》有关的国家法律和条例以及报告的文本数量，以便将这些文本制成一个表格。目前正在筹备建立一个数据库。

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.