遺伝学的情報とプライバシーをめぐって : 被検者のプライバシー権、血縁者等の知る権利、医療者の義務

抄録

Advances in the field of genetics have enabled the diagnosis of many genetic diseases, which has led to the benefits of prevention, early detection and treatment in some of them. Nevertheless many are neither preventable nor curable yet, even though we can diagnose them. Moreover, discrimination against patients with genetic diseases and their blood relatives exists. Therefore, a person tested who was diagnose with a genetic disease is sometimes determined to keep the test result from not only his/her employer and insurance company, but also his/her relatives (spouse and blood relatives). However, for blood relatives who are at the same genetic risk, knowing the result may be desirable from the viewpoint of prevention, detection, and treatment in the early stage, when the disease is preventable or curable. In this situation, two conflicting rights, namely, the right to privacy of the tested person and the right of blood relatives to know may be asserted. Although health care providers are responsible for the confidentiality of patient information, they may plan to inform blood relatives of their genetic risk for the sake of the above-mentioned benefits. This paper deals with the subject of how the conflict of interest between the tested person and his/her relatives should be regulated, and what actions health care providers should take. Blood relatives and the tested person share some common genetic information. I think that the genetic information of the tested person can be considered as that of blood relatives themselves under specified strict conditions because of their partial genetic identity. Then access to the genetic information of the tested person can be legally protected as the exercising of the self information control right of blood relatives.