Possibility of Legal Adjustment among Rights and Duties over Genetic Information in Japan: Patient’s Right to Privacy, Relatives’ Right to Know, and Healthcare Providers’ Duty of Confidentiality

Abstract

The remarkable progress of medical genetics has made it possible to diagnose many genetic diseases. While this has led to such benefits as prevention, early detection and treatment, many of them are neither preventable nor curable yet. Ascertaining the genetic mutation that causes disease may bring about discrimination against a person with a genetic disease and blood relatives. Since the Japanese are apt to worry about how they are perceived in public and to think of genetic disease as a disgrace to the family, a person diagnosed with a genetic disease sometimes keeps the result from those around him/her. However, it may be desirable for his/her at-risk relatives to know the result because of the above-mentioned benefits. This situation may confront healthcare providers with the difficult choice between maintaining a patient's confidentiality and disclosing his/her genetic information to his/her relatives. There is a conflict of interest among those persons. After surveying the current ethical and legal regulations of the World Health Organization and some countries on this matter, I discuss the possibility of legal adjustment in Japan. The patient and blood relatives share some common genetic information. Therefore the genetic information of the patient can be considered as that of relatives' own under specified strict conditions because of their partial genetic identity. Then, access to the patient's information can be legally protected as exercising of the self information control right of relatives.