文献一覧: 和田幹彦 (著者)

1 0 0 0 OA 遺伝•遺伝子情報•遺伝性疾患と法そしてクローンベビー•デザイナーチャイルドヘ?

著者: 和田幹彦
出版者: The Japanese Association of Sociology of Law
雑誌: 法社会学 (ISSN:04376161)
巻号頁・発行日: vol.2005, no.62, pp.41-53,191, 2005-03-30 (Released:2011-04-13)
参考文献数: 15

Genetic sciences, especially in the area of molecular biology, pose serious challenges and problems to us in the 21st Century. Genetic information of individuals gives new hopes and worries to patients and their families in their medical decision-makings. New technologies may also make human germline engineering possible and safe in the near future.The first half of the paper discusses the autonomy of patients and of their families in medical decision-makings, while we face awesome developments in genetics and genetic information. If a simple informed consent represented the autonomy in the last decades of the 20th Century, should our autonomy in the 21st Century include our right (or duty) of letting our family and relatives know of their potential genetic information and genetic (advantages or) risks? Should it also include our and their right to "remain in blessed ignorance"? The novelty facing us in this century is that newly accessible genetic information of individuals (1) does not change, in that his DNA sequences stay the same life-long, (2) does not necessarily indicate the current physical condition, but could predict probabilities of certain diseases, (3) may lead to such prediction that may bring about discrimination, and finally, (4) may lead to presumptions on genetic information and conditions of families and relatives. The individual autonomy in this century, therefore, may afflict and conflict with the autonomy of others, even more than it did in the last century. The paper cites and discusses in details a lawsuit decided on April 25, 2003 in Tokyo District Court, then later on January 27, 2005 in Tokyo High Court, where the plaintiffs (parents) were awarded generous compensation for not being informed by physician (s) of genetic risks of having new babies, even after their first born had a severe genetic disease. The paper proposes that professional genetic counseling would be a key solution to such newly arising (legal) problems of this century.The second half of this paper discusses reproductive human cloning and germline engineering, i.e. "Designer Children." Japan, in step with several other countries, prohibited reproductive cloning by law. There still are, however, limitations to the current regulation of genetic technologies in the international community. This paper discusses the recent "trial and error" by an Ad Hoc Committee and Sixth Committee of the United Nations General Assembly on an International Convention Against the Reproductive Cloning of Human Beings. They failed to agree on this treaty to ban reproductive human cloning despite the prevalent consensus that cloning babies should be prevented. The paper discusses then how the miscarriage of the International Convention might have closed the path to a future multilateral agreement to regulate or prohibit germline engineering. The discussions cover the "charm" as well as the risk, and the pros and cons of designing children. The paper contends that any potential regulation of germline engineering must consist of pragmatic measures that are viable within existing legal and social structures.Finally, the paper discusses how law and regulation, including timely provision of appropriate genetic counselors and counseling, might fail to keep up with the rapid development of science and technology. A common criticism voiced in Japan is that law, legal regulation, and social controls cannot level with the fast development of science and technology. The solution would be proposing and stockpiling possible and pragmatic measures well in advance, before another Dolly II the Designer Sheep would alarm us. Also, we probably should not expect a one and only truthful answer to all the bioethical questions on novel biotechnology and life sciences. Diversity, be it on the national or the international level, requires and should tolerate diverse responses to those questions.