pp. 353-354 in Bioethics in Asia

Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute

Copyright 2000, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.

P7. Attitudes toward Molecular Genetics Predictive Testing: Case Study of Familial Amyloidotic Polyneuropathy in Kyushu, Japan

Kaori Muto, The Health Care Science Institute, Tokyo, Japan.

Setsu Akutsu, Japan Juvenile Education College

Jiro Nudeshima, Shohei Yonemoto, Mitsubishi Kasei Institute of Life Sciences, Tokyo, Japan

FAP is an autosomal dominant genetic disease with prominent peripheral and autonomic nerve involvement. There are 130 patients suffering in Japan in 1994, with a mean age of onset of 33 years. The mean survival time after onset is 10 years, and liver transplants are an option. We conducted a semi-structured interview study to understand the attitudes of people with FAP and medical professions toward predictive genetic testing in Kyushu Island. The subjects in the Q city, in Kumamoto Prefecture, included the leader of a patients association, 11 patients (M:F=7:4) and 4 at-risk family members with FAP (M:F=1:3), 4 widows who lost their spouses because of FAP, 6 physicians and researchers, 4 nurses and 7 social workers, and an association leader, doctors, care-givers, social workers in Portugal and in Sweden.

As results, we have found some differences between the patients association, who wanted to promote the test to root out the disease, and medical professions, who have shown the reluctance to provide the service. A summary of the difference in attitudes toward predictive genetic testing is in Figure 1, and a comparison overseas in Table 1.

Figure 1: Difference of attitudes towards predictive testing

We found that physicians suggested the patients associations were not active, they had few social events, only passive cooperation with medical research and no financial support. The leader felt trapped between demands of people with FAP and physicians, but the people with FAP do not want to take an active part in the patients association because of fear of discrimination against them. Patients and families suffer most from marriage discrimination. Discrimination in the community prevents them from coming out and accepting services offered by care workers or visting nurses, but there were no cases reported of insurance or employment discrimination, different to the US situation.

Table 1: Comparison of the situations of people with FAP in three countries


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