Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Yasuko Shirai*, Makiko Osawa** and Yukio Fukuyama**,
*National Institute of Mental Health, JAPAN
**Dept. of Pediatrics, Tokyo Women's Medical College, JAPAN
In a previous paper by Prof. Wikler, genetic counseling as an information service was discussed. Especially when we do not know any treatment, we have to know the significance of the information service. Furthermore, Prof. Fujiki said at the beginning of this section, we have to know the understanding of the public, which is the focus of this session. The data presented here is data from physicians. What were often emphasised were enlightenment, education and supply of information (Fujiki 1988, Fujiki et al. 1991). We need to step back to think about the issues, and find out what is in the mind of the supplier of information. We have to have a good orientation or else we will become confused (Kessler 1979, President's Commission 1983). Here I present the results of a survey we conducted with the support of the Research Committee on the Clinical Symptomatology, Genetic Counseling and Epidemiology of Muscular Dystrophy, supported by the Ministry of Health and Welfare.
Prof. Wertz conducted many surveys concerning genetic counseling (e.g. Wertz & Fletcher 1987, Wertz & Sorenson 1986), and this particular survey uses the same methodology, and we modified some of the questions for use in Japan. In October 1990 we sent 171 questionnaires to a total of 57 facilities. We requested people fill in the sheet and return to us. We received responses from 40 facilities and 79 respondents. About half of the respondents have experienced genetic counseling (Table 1a). There were very few female respondents, so that both female and male counselors are included in the results presented. In Table 1b the number of cases that they had been involved in genetic counseling is recorded, for neuromuscular diseases and other diseases. Most people had counseled up to ten times.
a) Experience of Genetic Counseling
Columns across page: Experience: Male; Female; No sex given; Total
Have some experience: 30 (48.4%); 4 (30.8%); -; 34 (43.0%)
No experience: 30 (48.4%); 9 (69.2%); -; 39 (49.4%)
No answer: 2 (3.2%); 0; 4 (100%); 6 (7.6%)
Total: 62; 13; 4; 79
b) Number of cases of Genetic Counseling
Columns across page: Number of cases: Neuromuscular diseases; Others; Total
1-10: 18 (58.1%); 8 (53.3%); 26 (56.6%)
11-20: 8 (25.8%); 5 (33.3%); 13 (28.3%)
More than 30: 5 (16.1%); 2 (13.3%); 7 (15.2%)
Total: 31;15; 46
c) Length of Experience of Genetic Counseling
Less than 10 years: 17 (51.5%)
10 years - 20 years: 11 (33.3%)
More than 20 years: 5 (15.2%)
Total number: 33
We then asked what they perceived as the responsibilities or roles of genetic counselors (Figure 2). The possibilities included: support and understanding of medical facts; support for judgement of medical facts; support for understanding the countermeasures; support for selection of countermeasures; support for the execution of selected actions; support for acceptance and countermeasures against the disease; support for countermeasures against the possibility of recurrence. Out of these seven, more than half the respondents answered that all were very important. Those who had experienced more genetic counseling put more emphasis on item 6 (X2+6.187 dÄ=2 p+0.045).
We then asked what were the appropriate behaviour patterns of a counselor (Figure 3). The options were: emphasise the importance of self-determination of the client; to prepare the support of the counselor for the self-determination of the client; to supply information about other people in the same situation; to supply information to counselors if they were in the same situation; give practical advice on what the client should do. The most importance was placed on item 2, that the counselor should be prepared to give support to the self-determination of the client. One issue here is that we have to emphasise the self-determination of the client, and less than half the people were not supporting this. Item 5 is directive counseling, and there are still some people who believe that directive counseling is an appropriate action.
Figure 2: Roles of a Genetic Counselor
Figure 3: Appropriate Behaviour Patterns of a Genetic Counselor
Grade the importance of each of these goals of counseling using the five point scale:1 very important, 2 somewhat important, 3 uncertain, 4 somewhat unimportant, 5 not at all important.
Figure 4: Disclosure of Information to Third Parties in Genetic Counseling for Duschenne Muscular Dystrophy
"If an afflicted child and parent rejected supplying information on the disease to other family members who were at risk for the disease. What is the appropriate action for the counselor?" The number of respondents who chose each option is indicated, and the % of that number that were experienced counselors is indicated.
When we consider information services and disclosure of information it is important to know the attitudes of counselors and specialists. This is a point we need to discuss.
Fujiki, N. (1988) "Bioethical considerations in genetic counseling", pp. 97-106 in F. Bernard, Z. Kajikawa & N. Fujiki, eds., Human Dignity and Medicine (Amsterdam: Excerpta Medica 1988).
Fujiki, N. et al. (1991) "Japanese perspectives on ethics in medical genetics", pp. 77-91 in N. Fujiki, V. Bulyzhenkov & Z. Bankowski, eds., Medical Genetics and Society (Amsterdam: Kugler Publications 1991).
Kessler, S., ed., Genetic Counseling: Psychological Dimensions (New York: Academic Press 1979).
President's Commission for the Study of Ethical problems in Medicine and Biomedical and Behavioral Research, Screening and Counseling for Genetic Conditions (Washington D.C.: U.S.G.P.O. 1983).
Wertz, D.C. & Fletcher, J.C. (1987) "Communicating genetic risks", Science, Technology & Human Values 12: 60-66.
Wertz, D.C. & Sorenson, J. (1986) "Client reactions to genetic counseling: self-reports of influence", Clinical Genetics 30: 494-502.