Nationwide survey on predictive genetic testing for late-onset, incurable neurological diseases in Japan

A nationwide survey was conducted for predictive genetic testing for late-onset, incurable neurological diseases. A questionnaire was sent to 125 university hospitals and national hospitals, and was returned by 69% of them. Of the 86 responding hospitals, 63 had genetic counseling clinics and answered the questions concerning predictive testing. Of these, 46 had experienced clients with an interest in or a request for predictive testing during the period from April 2004 to March 2006. A total of 322 clients were accumulated, the majority of which were interested in myotonic dystrophy (n = 150), followed by spinocerebellar ataxia (n = 86), spinal and bulbar muscular atrophy (n = 40) and Huntington's disease (n = 31). Most such clients were counseled by medical doctors, who had the "Japanese Board of Medical Genetics, Clinical Geneticist" certification, but others, including neurologists, nurses, clinical psychologists or genetic counselors also contributed, albeit to a lesser extent, to genetic counseling in Japan. Many respondents felt that a multidisciplinary approach by a counseling team consisting of a clinical geneticist, a neurologist, a genetic nurse, a clinical psychologist and a genetic counselor had not yet been established. There will be a great need for educated and trained non-medical doctor staff not only to improve the quality of genetic counseling and psychological support for such clients, but also to conduct the psychosocial research on Japanese clients requesting predictive genetic testing.