pp. 138-144 in Human Genome Research and Society
Proceedings of the Second International Bioethics Seminar in Fukui, 20-21 March, 1992.

Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.

Copyright 1992, Eubios Ethics Institute All commercial rights reserved. The copyrights for the employees of the US Government, are subject to other copyright arrangements. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

Ethical considerations in genetic counseling

Yasuko Shirai*, Makiko Osawa** and Yukio Fukuyama**,
*National Institute of Mental Health, JAPAN

**Dept. of Pediatrics, Tokyo Women's Medical College, JAPAN

In this paper we will look at the ethical views on genetic counseling. This will be focused on what issues are relevant to genetic counseling, before reviewing the ethical issues. As in previous papers, when we talk about the medical results of the Human Genome Project, it is diagnosis that will first become effective, whereas treatment and diagnosis may not advance in parallel. This is one issue.

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.

Table 1: Characteristics of Respondents

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

In Figure 1 the goals of genetic counseling perceived by the respondents are shown. We asked respondents to grade the importance of each of these goals of counseling using the five point scale, very important, somewhat important, uncertain, somewhat unimportant or not at all important; prevention of genetic diseases; removal or lessening of client guilt or anxiety; reduction in the number of carriers; improvement of the genetic health of the population; helping individuals and couples cope with genetic problems; and helping individuals and couples achieve their parenting goals. Of these six goals, goals 1, 2 and 5 were regarded as very important by more than half. However goals 3 and 4, that are somewhat related to eugenics were not so well supported as goals of genetic counseling. If we compare the two groups, those who had never experienced counseling and those who had, the experienced counselors put more emphasis on this item (X2=10.693 dÄ=4 p+0.030).

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 1: Goals of Genetic Counseling

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.

The respondents were also asked questions concerning DMD in particular. The question concerned the disclosure of information to third parties (Figure 4). The situation was 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 options were: respect the will of the client that disclosure should not be made; even if acceptance of the client is not obtained, a counselor needs to respect the client; even when acceptance of the client is not obtained, a counselor should disclose the information against the will of the client; regardless of the will of the client the risk information should be disclosed; whether or not the client approved a counselor has to disclose information based on the request of relatives or third parties at risk; the relevant information should be introduced by the doctor who refereed the client. The shaded area means experienced counselors and the white is those without counseling experience. Those who had experienced counseling said that efforts should be made for disclosure, but finally the client's will should be respected. Those who had little experience of genetic counseling said that even if it was against the clients will, limited information should be disclosed.

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.

References

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.

This study was supported by a grant for Research on the Clinical Symptomatology, Genetic Counseling and Epidemiology of Muscular Dystrophy from the Ministry of Health and Welfare.
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