COMPARATIVE STUDY ON ETHICAL AND LEGAL PROBLEMS OF GENETICS,GENETIC COUNSELING,AND GENE THERAPY

遗传学、遗传咨询和基因治疗的伦理和法律问题的比较研究

基本信息

批准号：
07620041
负责人：
MARUYAMA Eiji
金额：
$ 1.15万
依托单位：
KOBE UNIVERSITY
依托单位国家：
日本
项目类别：
Grant-in-Aid for Scientific Research (C)
财政年份：
1995
资助国家：
日本
起止时间：
1995 至 1996
项目状态：
已结题

项目摘要

In this research, I studied the legal and ethical problems of medical genetics. I focused my attention on the points of informed consent, confidentiality of genetic information, genetic discrimination in insurance contracts, the relationship between genetics and eugenics, maintainbility of wrongful birth and wrongful life actions and remedies to be given successful plaintiffs. In considering these problems, I used materials of the United States. Additionally, I critically consulted GUIDELINES ON ETHICAL ISSUES IN MEDICAL GENETICS AND THE PROVISION OF GENETICS SERVICES,which is prepared by Wertz, Fletcher, Berg and Boulyjenkov in 1995 under the auspices of the World Health Orgenization.1.With repect imformed consent, I studied (1) voluntariness and nondirectiveness of genetic diagnosis and counseling, (2) the contents of imformation to be given clients, (3) understanding of clients, (4) testing of incompetent persons. With respect genetic screening of newborns, I investigated practices in Hyogo area and laws in the United States.2.With repect to the duty or authority to warn the third party who is at risk if being a carrier of genetic disease, commentators and guidelines tend to stop short of imposing a duty upon medical professionals.3.With repect to the insurance discrimination based upon genetic information, there are many bills introduced in the current U.S.Congress, which will ban or limit such discrimination on top of the protection accorded by HIPPA of 1996.4.With repect to the negligence in genetic counseling, the absence of the provision that legalizes genetic abortion made the Japanese courts unsympathetic to the plaintiff parents. In the United States, major trends seem to have been established : recognition of wrongful birth action and denial of wrongful life action. There remains disagreement with repect to the remedies to be accorded to successful plaintiffs.

在这项研究中，我研究了医学遗传学的法律和伦理问题。我重点关注了知情同意、遗传信息的保密性、保险合同中的遗传歧视、遗传学与优生学之间的关系、错误出生和错误生活行为的可维持性以及为成功的原告提供的补救措施等要点。在考虑这些问题时，我使用了美国的材料。此外，我批判性地查阅了《医学遗传学伦理问题和遗传服务提供指南》，该指南由 Wertz、Fletcher、Berg 和 Boulyjenkov 于 1995 年在世界卫生组织的支持下制定。 1.经充分知情同意，我研究了(1)基因诊断和咨询的自愿性和非指导性，(2)基因诊断和咨询的内容向客户提供的信息，(3) 对客户的了解，(4) 对无能力人员的测试。关于新生儿基因筛查，我调查了兵库地区的做法和美国的法律。 2.关于警告第三方如果是遗传病携带者有风险的义务或权力，评论者和指南倾向于3、针对基于基因信息的保险歧视，本届美国国会提出了多项法案，在HIPPA的保护基础上禁止或限制此类歧视的1996.4.对于遗传咨询的疏忽，由于缺乏基因堕胎合法化的规定，日本法院对原告父母并不同情。在美国，主要趋势似乎已经确立：承认错误的出生行为并否认错误的生命行为。对于向胜诉原告提供的补救措施仍然存在分歧。