Changes of Bioethical Perspective of Japanese Clinical Geneticists about Repro-Genetics During 1995–2001

Abstract

The progress of genetic medicine has given rise to recent changes in the field of health care, such as expected benefits and potential risks for patients and their relatives. Individual genetic information can unlock many secrets within the genetic family and, sometimes the community to which he or she belongs. Therefore, the traditional duty of confidentiality owed by a health care professional to a patient has been challenged by the more serious discussions based on new genetics. Clinical geneticists providing genetic services must be aware of such complicated situations and whenever possible offer support to the patient (client) and their family members. Excluding eugenics and nonscientific perspectives, the Japanese government renamed and reworked “The Eugenic Protection Act” into the “Maternal Heath Protection Act” in 1996. From 1995 to 2003, the Japanese Society of Human Genetics (JSHG) revised guidelines for genetic testing three times. This process attempted to clarify indications for genetic testing, to focus on protection of individual genetic privacy and to deepen respect for familial relationships and responsibilities. The survey involving 221 JSHG approved clinical geneticist (response rate 54%) revealed that during last 5 years the number trying to do “non-directive” rather than “directive” counseling increased significantly. Although there is still in confusion on certain issues, such as data disclosure to relatives, the global bioethical view of new genetics is gaining Japanese geneticists’ acceptance.

Citation

Shinoki, E. and Matsuda, I. (2005), "Changes of Bioethical Perspective of Japanese Clinical Geneticists about Repro-Genetics During 1995–2001", Takahashi, T. (Ed.) Taking Life and Death Seriously - Bioethics from Japan (Advances in Bioethics, Vol. 8), Emerald Group Publishing Limited, Leeds, pp. 85-112. https://doi.org/10.1016/S1479-3709(05)08804-7