pp. 184-187 in Intractable Neurological Disorders, Human Genome Research and Society. Proceedings of the Third International Bioethics Seminar in Fukui, 19-21 November, 1993.

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


Copyright 1994, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

How rational are Indians in their views on handicaps and heredity?

Ishiwar C.Verma, Genetic Unit, Dept. of Pediatrics, All India Institute of Medical Sciences, New Delhi, INDIA

Norio Fujiki, Dept. of Internal Medicine & Medical Genetics, Fukui Medical School, JAPAN

Y.R. Ahuja, Genetics Laboratory, Bhagwan Mahavir Medical Centre, 10-1-1 Mahavir Marg,

Hyderabad 500 000, Andhra Pradesh, INDIA

R.K. Marvah, Dept. of Pediatrics, Postgraduate Institute of Medical Education and Research,

Chadigarh 160 012, INDIA

Krishna C. Malhotra, Department of Anthropology and Human Genetics, Indian Statistical Institute, 203 Barrackpore Trunk Road Calcutta - 700035, INDIA

Aparna P. Parikh, Shri Motibai Thackersey Institute for Research in Mental Retardation, Sewri Hill, Sewri Road, Bombay 400 033, INDIA


It is axiomatic that no two persons are alike in their genes or their traits. The different religious faiths and cultures lead to further dissimilarity of views. However, inspite of such great diversity of beliefs, there is much in common in the ethics of the people around the world. In order to explore whether a universal code of ethics can be discerned or delineated we carried out an Indo-Japanese collaborative study to ascertain the views of subjects from different parts of India representing different religious and ethnic groups.

1. Materials and Methods

Three hundred subjects were selected at each of the five centres (Delhi, Bombay, Calcutta, Chandigarh and Hyderabad). The subjects were divided equally among general public, students, pregnant women, and those having children with handicaps.

The distribution of the subjects by religion is shown in Table 1. Hindus predominated in all cities. However, in Delhi a significant proportion of subjects were Muslims (8.5%) and Christians (5.3%). Bombay also has a good percentage of Christians, Muslims, and others (comprised of Irananians and Parsees), showing that Bombay is truly a cosmopolitan city. Hyderabad had a large numbers of Muslims (23.5%). In Chandigarh 28% of the subjects belonged to the Sikh religion, which is an offshoot of Hinduism, combined with some precepts from Islam.

Questionnaire method was used to seek information on demographic data, views and attitudes towards the handicapped, knowledge about genetics, appreciation of risk of recurrence, prenatal diagnosis and abortion, testing for deleterious genes, contraception and other reproductive options.


Table 1: Distribution of subjects by religion (%) Columns across page: Overall; Delhi; Calcutta; Bombay; Hyderabad; Chandigarh;

Hindus 76.9 84.7 98.3 72.2 69.1 60.3
Muslims 8.5 7.3 1.3 8.4 23.5 2.3
Christians 5.3 2.7 0.3 9.4 6.7 7.3
Sikhs 6.6 4.7 - 0.3 - 28.0
Others 2.7 1.0 - 9.7 0.7 0.2


2. Demographic data

The characteristics of the subjects (N=1404) were:
Sampling : self respondents 28.3%; interviewed 71.7%;
Sex:: females 75.0% males 25%
General: pregnant women (530/1053) 50.3%; married 80.2%; having children with handicaps 63.8%
Occupation: housewifes 48.0%; service 30.7%; students 16.8%; in business 4.2%
Education: professionals 13.6%; college, high school or technical education 68.1%; primary school 9.4%; no education 8.9%
Per capita income : > Rs.1000 66.0%; Rs.500-1000 23.8%; 3. Attitude and views regarding the handicapped

Table 2 summarises the attitudes and views of 1500 subjects regarding the handicapped. It is evident that the great majority (87%) held the ethically correct view point. The majority (57.1%) of the subjects recognized that the facilities for the handicapped are very poor, and the majority felt that care of the handicapped should be by the national government, followed in decreasing order by local government, and voluntary agencies. Many (35.1%) believed that parents/siblings should take care of the handicapped, that communities can build facilities for the handicapped (63.1%), that education is useful for the handicapped (91.0%), and that the handicapped can adapt to a job (67.8%).

The majority (96.8%) of the respondents said they were interested in helping those who were handicapped, and 84.1% were willing to provide voluntary help. A greater number of those without a handicapped child in the family said that they were willing to help compared with those with a handicapped child (97.6% vs 89.5%).


Table 2: Attitudes and views regarding handicapped - % responding yes (Of those responding "yes", 59-65% were parents of non-handicapped children (different %'s for different questions)

Welfare of a handicapped child is as important as that of a healthy one 87.1
Money should be spent equally on handicapped and normal children 81.8
Handicapped should not live isolated life 83.1
Willing to have contact with handicapped 88.3


4. Consanguinity

Overall 9.1% of the subjects were consanguineously married, the maximum being in Hyderabad (28.4%), as this city has a large Muslim population. Consanguinity was least in Calcutta, as this city has a dominantly Hindu population, who by custom and culture do not marry consanguineously. The presence of consanguinity was negatively correlate with education, those with the highest level of education had the lowest consanguinity rate.

In answer to the question whether "consanguinity should be avoided", 64.9% of the subjects agreed entirely, 10.8% partially agreed, and 13.2% entirely disagreed. Of those who agreed that "consanguinity should be avoided", 69.9% of the respondents were themselves from non-consanguineous families, while 30.1% were from consanguineous families.

5. Knowledge about genetics

Heredity was considered as a cause of disease by 65.3% of subjects, with a positive correlation with educational level. Genetics was considered 'good' by 37.4%, 'predetermined' by 37.9%, and 'scientific' by 63.2% of the subjects.

The proportion of congenital disorders being genetic was answered correctly by 49.7% of subjects, with a positive correlation with educational status. Knowledge about the frequency of genetic/congenital disorders was poor, as only 23.9% gave correct responses.

However, the majority (80-91%) of subjects correctly responded that handicaps can be caused by disorders of genes/chromosomes, problems during pregnancy and labour, and pregnancy at advanced maternal age; while only 38% of subjects agree that incompatibility of blood groups can be a cause of handicaps. Knowledge regarding these factors showed a positive correlation with educational level. The contribution of heredity to diabetes, mental retardation, Down syndrome an thalassemia was under appreciate by subjects of all educational groups, as correct responses were given by only 20-34% of the subjects.

6. Risk of recurrence

When questioned what was the lowest rate of recurrence considered as a high risk;, 28% of subjects answered 1%, while 8.9% replied 2%, and 27.2% said 5%. Factors which weighed for consideration of high risk were: first preference (51.7%) 'severity of disease'; second preference (46.1%) 'possibility of treatment'; third preference (33.5%) 'possibility of prevention'; and fourth preference (59.5%) socio-economic burden.

Similarly 34.5% of respondents would prefer abortion if the risk was 1%, against 8.1%-19.5% for risks of 5% to 100%. No clear influence of education on these responses was apparent. It is likely that the subjects did not fully comprehend this question.

Of the respondents, 36.6% would bear a baby with a risk of handicap of 0%, 12.7% with risk of 1%, and 8.9%-11.5% for risks of 5, 10, 25, 50 or 100%. This seems to suggest that risks of 5% or more were considered equally high. There were no clear cut differences in the responses by religion of the respondents - 11% of Hindus opting to bear a baby with 100% risk, as compared with 10.9% of Muslims, 5% of Christians, 13% of Sikhs and 5% of other religious beliefs.

7. Prenatal diagnosis

63% knew about prenatal diagnosis, and the commonest source of information was health professionals (36.6%), followed by newspapers and magazines (35.6%).

If the first child had Down's syndrome, for the next pregnancy 42.5% would opt for prenatal diagnosis, while 7.0% would not like prenatal diagnosis. If prenatal diagnosis shows an abnormal fetus, 10.3% would not have an abortion while 70.3% would opt for abortion. The number opting for abortion showed a positive correlation with the level of education. There was no difference in this response by religion. This was surprising as it is expected that Christians and Muslims may not choose abortion because of religious bias against it.

8. Does an abnormal fetus have a right to life

Of those who responded, 50.3% agreed that an abnormal fetus does not have a right to life, the reason given by the majority (58%) being that "it is not good for an abnormal fetus to be born". The other reasons were "the social and economic burden will make the family unhappy" (18.4%); "a handicapped individual person is a burden on the society" (10.3%); and "a handicapped person has a low value as a human being" (9.8%).

That an abnormal fetus has a right to life was agreed to by 30% of subjects. There was no clear influence of religion on this response. The reasons for this were that "life is given by God" (56.9%); "life should be preserved" (19.6%); and "many handicapped lead normal lives" (15.4%).

9. Prenatal diagnosis of sex for social reasons

Subjects were asked the question whether they would accept prenatal diagnosis of sex for social reasons for couples with one or more daughters. The majority (70.7%) of subjects disagreed completely with this proposition, the overwhelming reason for this being "discrimination between the sexes". Only 13.3% agreed completely, while 16.0% agree partially with this course of action. Reasons for agreement, in order of preference, were: "to continue family lineage", "to have a male child to support old parents", "to reduce socioeconomic burden of dowry", and "to have a balanced family". There was no difference in this response by religion - Hindus 13.6%, Muslims 13.3%, Sikhs 11.1% and Christians 6.3%.

In the event of prenatal diagnosis of sex for social reasons, if the fetus was diagnosed to be female 91.4% would opt for continuing the pregnancy, while only 8.6% would chose abortion.

10. Carriers of a deleterious genes

On learning that a person is carrier of a deleterious gene, 60.6% would be greatly worried, 29.0% somewhat worried, while 10.4% said they would not be worried. The uneducated were more worried than the educated.

If a carrier test were available, 92.5% would definitely like to be tested, while 79.4% recommended that siblings should be tested. There were no significant differences in these responses by educational level, or whether there was a handicapped child in the family or not.

The choice of best time to test for the deleterious gene was, in order of preference: before marriage, after marriage but before pregnancy, during early pregnancy, and at birth.

11. Reproductive options when recurrence of a disorder is high

The acceptable options are listed in Table 3. Adoption was the most acceptable option, followed by use of contraception by one the partners and artificial semen/ovum donation. If contraception was considered desirable an equal number responded that the husband (31.8%), or wife (30.5%) should adopt family planning measures.


Table 3: Reproductive options acceptable if risk of recurrence very high

Option; %

Adoption 32.9
Use contraception 28.8
Artificial semen donation / Ovum donation 21.5
Sterilisation of one partner 11.4
Try pregnancy 5.4


12. Conclusions

The central place in bioethical decisions belongs to the "patient". The doctor or medical geneticist gives advice based on the principles of beneficence, justice and autonomy to enable the patient to chart out and follow an appropriate course of action. Conflicts arise because what is recognised as good and just by the society is perceived differently by the doctor (who derives his livelihood from the patients' choice), and the patient (who is motivated above all else by personal benefit). However, restraints are put on the doctor and the patient by Law, Religion and Society. These "limits are an essential component of civilisation, but are also the root cause of ethical conflicts.

It is observed that the majority of subjects, irrespective of education or religion had the correct view an attitude towards handicapped subjects. This shows the innate goodness of the people in India. However, the knowledge of the subjects about disorders which are genetic was poor. This highlights how important is the task to educate all people regarding genetic disorders, so that they can benefit from the new genetic techniques.

It is well known that religion is an important determinant of the decisions regarding prenatal diagnosis. In India the majority religion is Hinduism, which does not have any specific prejudices against abortion. Moreover, socioeconomic pressures an the lack of rehabilitative facilities provide a compelling reason for making couples opt for prenatal diagnosis and abortion, in order to avoid the birth of an abnormal child. Thus even a small risk of 1% was considered sufficiently high to encourage the couples to go in for prenatal diagnosis, and abortion if the fetus was affected.

Similarly socioeconomic pressures made couples very worried to learn that they were carriers of a deleterious gene, and they were eager to go in for testing. Majority agreed that even the siblings should be tested for the presence of deleterious genes.

The choice of most options was not affected by the religious faith of the subjects. Thus it appears that generally the people in India are evolving towards a rational society, where individuals would like to avoid socioeconomic burdens. At the same time they show increasing concern for those with handicaps. These are very promising trends in a world torn by war, conflict and intolerance.


pp. 243-248 in Intractable Neurological Disorders, Human Genome Research and Society. Proceedings of the Third International Bioethics Seminar in Fukui, 19-21 November, 1993.

Discussion

Verma: Prof. Fujiki, distinguished professors, colleagues and friends. Good morning. Welcome to this session on International Attitudes to Genetic Technology and Disease. It is axiomatic that no two individuals are alike, whether in their DNA or character, and this also applies to different countries and nations, however the discussions of the last few days have shown us that within these different views one can find a consensus on many bioethical issues. Japan has taken a lead by trying to develop consensus on these issues, because Prof. Fujiki has organised three Seminars, this is the third meeting on this subject. And Prof. Yagi, who we heard from yesterday, has also organised a meeting three years ago which resulted in the Inuyama Declaration. Now let me move onto my paper.

Takebe: Thank you Prof. Verma for your paper, let us take some questions. Yes, Prof. Lo.

Lo: May I ask what do you exactly mean by fetal sexing for social reasons. What are the social reasons that you have in mind?

Verma: In most cases what we mean by this is that they have no male child in their family, and the majority of them have more than two daughters. So there is no medical or genetic indication for doing prenatal diagnosis.

Leavitt: There has been a big movement in the last few years to bring statistical surveys and statistical analysis into bioethics. It certainly gives the appearance, at least, of making ethics a more scientific profession. I'd like to know although, what is really the importance of statistical quantitative studies in ethics. In other words, what do we really learn from this new way of doing bioethics?

Verma: One objective is that sometimes we hold a general view that this is what people belief, but when you do the study, many times you get a completely different answer. Because some of the things here I thought would be related to religious belief, but I found that nearly all people of all religions gave a similar range of percentages. So this really gives you a more scientific basis for forming an opinion or a view in ethics.

Takebe: Any more questions or comments? May I ask how popular prenatal diagnosis is, is it popular for pregnancy in women over 35 years of age?

Verma: Prenatal diagnosis has become very popular in cities. In our country the burden of an abnormal child is tremendous. rehabilitation is not very good, so nobody wants to have an abnormal child. In the cities there are a lot of ultrasound machines, so it has become easier to detect many abnormalities. After the age of 35 years unfortunately the uptake of prenatal diagnosis has not been very good. Many obstetricians are not yet educated on this issue, that they must get the chromosomal studies done for all women who are older than 35 years.

Takebe: Well, we should move on, thank you.

Verma: The next speaker is Dr Hirayama, who we know very well as the assistant to Prof. Fujiki, and he has been active and working very hard to help all of us. We can allow one or two questions.

Makino: I'd like to ask about the subjects of the survey, you talked about businessmen, but what kind of businessmen were these persons and how did you chose them?

Hirayama: There may be some bias in the sampling, I chose one company alone, in Fukui. They are almost all graduates of high school, as an educational level.

Makino: Did you examine differences between sex and age groups.

Hirayama: We didn't have time to analyse before today so we are doing that later.

Verma: You seem to suggest that abortion is allowed up to 22 weeks, but your comments seem to indicate that there is some resistance to abortion in the early weeks. Is abortion in the early weeks allowed with no problems?

Hirayama: Yes, I mean my point is, at what time does the human soul enter the fetus? I think ensoulment is important. The fertilised egg has a lot of deleterious genes, half of them have some weakness or genes causing spontaneous abortion. So ethically, abortion at the time around implantation is no problem in my view.

Fujiki: Referring to Prof. Makino's question, we are now continuing our study using multivariate analysis, and the international survey will be put together, and report made to the sponsoring institute the World Health Organisation. Before 1982 we had a previous survey, and looked at the sex differences, etc., but at this time we had no chance to present the details. For the publication we will do that.

Verma: Thank you Dr Fujiki and Dr Hirayama. The next paper is from Korea, and Dr Lee will read the paper. Thank you, Dr. Lee will answer any questions at the poster session. Prof. Lo from China will present his paper on the results from China. Thank you, Prof. Lo, has the one child per family policy in China helped the development of genetics in your country?

Lo: I would think so, but I am not really impressed by how much it has. I would think it may have something to do with the attitudes towards the handicapped or towards people with a serious genetic disease, because they always want to have a healthy child rather than a sick one, if they are going to only have one. But, of course the one child per family policy in China allows the parents to have a normal child. If they had one that was sick, then they are entitled to have another one.

Verma: So the government actually has established many prenatal diagnostics units?

Lo: Well I would think that there were more prenatal diagnostic clinics concerning chromosomal diseases than for diagnosis of biochemical or genetic diseases, and there are very few doing molecular diagnosis.

Verma: Thank you. We must move on to the next paper by Prof. Pinit Ratanakul on a study of Thai students' attitudes to science and technology. We have only time for one question. What is the legal situation regarding abortion?

Ratanakul: Well the law is still against it. But privately there are some clinics who do it, against the law.

Verma: Is it not even allowed to preserve the life of the woman? That must be allowed?

Ratanakul: Not yet, because the Buddhists are opposing it.

Verma: There does seem to me be a need for religion to change with the times. Because most of the religious books are written many many years ago and never by the master himself. It is always by his disciples, and so many years ago. That seems to me to indicate that some change is required.

Ratanakul: No, you see in Thailand, the Buddhists believe that Buddhism does not need to change. You can not change religion according to the circumstances, because there would easily be more and more killing.

Verma: The next paper is by Prof. Darryl Macer, on attitudes to genetic diseases in Japan, Asia and the Pacific. Are there any questions?

Billings: I think it is a general perception in the United States that the Japanese may be more open to germline gene therapy than at least some groups are in the United States, and I am sure that there is a diversity of opinion in Japan as well. Do you have any sense of whether the very substantial objections and unknowns associated with germline gene therapy are appreciated by Japanese society as evidenced by your survey vehicle.

Macer: In fact in this survey the results for the question about gene therapy, questions 28c and 28d were "Would you support altering the inheritance...for children...", which is germline gene therapy. And even if you ask this question in the United States you get a strong support. I don't think people really understand the implication of what they are saying in this survey.

Billings: That gets me to my other point, which is how you pose the question, what words you use around the question, might change the response rate. It was certainly one interpretation of the various surveys that have been made in the United States, that people really had no idea of what they were answering, and what the implications were, and if for instance you had called it germline manipulation, instead of therapy, you may get an entirely different kind of response to the same procedure and outcome.

Macer: Yes, but I think for the public acceptance in a country, if the people are presented with a technology, and told this is gene therapy this will cure cancer, they will approve. If they are told this is genetic engineering which will change the germline for future generations, they may reject on it. So it depends on the media and also on the reason, I think.

Billings: Yes.

Verma: Dr Kagawa, please.

Kagawa: It is obvious that in any country there are different opinions on gene therapy or other applications of genetic engineering, so in that case, what is your position if the opinion is split, and there are many many different opinions? We have to do something, either patients or society. How can you choose one decision for any personal patient or society?

Macer: Well I think as you say, in every society there is a difference, and it means we must give informed choice to the patient. Not only informed consent but informed choice, to choose within some guideline of what is socially acceptable.

Verma: Last comment by Prof. Lo please.

Lo: It seems to me that the meaning of the questions in the questionnaires of yours or Profs. Fujiki's and Verma's, are quite difficult to understand if someone doesn't have quite a bit of education. You have quite a number of the lay public. Do you pick these people out the public according to their education, or just randomly, an ordinary worker or a college professor, how do you do it?

Macer: The selection of the sample in New Zealand, Australia and Japan, especially, was by driving in the countryside and randomly selecting different streets, and chosing every second house and putting a letter into the letterbox, and going across the countryside. And also with the cooperation of some colleagues and friends sending some to a distant place like Kyushu in Japan, or Hokkaido. For much of Honshu it was personally done by driving around the countryside,

Lo: Then, did you encounter the situation where quite a number of the people left many of the questions unanswered.

Macer: I think what is more common is they do not respond. In fact some people don't like to say I don't know. Another way of measuring is to compare from a sample with a high response rate, for example randomly chosen academics, which I did about two years ago, with about 60% response, with no reminder, with the public who had a 21% or 26% response, this year, and in 1991, respectively. If the answers for a question are similar I think it is also best if we confirm some of the key questions with a random telephone survey, which is also what I've been doing with the comparisons to other national surveys.

Verma: Thank you very much Prof. Macer. Let us move onto the next paper, on public attitudes to bioethical dilemmas in Russia, by Dr Vijay Kaushik. We will allow one or two questions. I would like to ask you did you do this study before Boris Yeltsin came in or after?

Kaushik: After, this year.

Verma: Very recently. Do you think there would have been any difference in the results if you had done before?

Kaushik: I think the society has been in a process of change for the last ten years.

Tranoy: I feel there must be a great deal of uncertainty attached to the figures that you have given us, but there is one particular feature which makes me very very curious, and that is there is so much less trust in scientists and experts in Japan, both amongst the students and the general public. I would very much appreciate comments on that, perhaps not from you as you are not Japanese, but from people here in Japan. Is this so, or is this a sign that something has gone wrong?

Kaushik: Well it will be difficult for me to comment about Japanese, but certainly about Russian response, to me it seems that they had great respect for the authority in the past. A doctor is considered a symbol of authority, so it seems to me that the high trust in Russia seems to be coming from that point of view. I cannot say about Japan.

Verma: Prof. Macer would you like to respond, because the data on the Japanese is by you?

Macer: Yes, I think the data that we saw is reasonably reliable. Perhaps we should discuss this later.

Takebe: Because time is limited let us discuss that issue this afternoon. We have some extra time in the afternoon.

Macer: I would advise you to discuss with some Japanese doctors, to answer this question.

Verma: There will be a special session for general discussion we can discuss this in. Let us break for tea now, thank you.

Takebe: I want to ask Dr Frank Leavitt to talk about the Israeli tradition in medical ethics. Thank you Dr Leavitt. There is time for one or two questions. Prof. Kagawa.

Kagawa: Israel and Japan are the only countries which are exceptional in that the heart and liver transplantation is not permitted. Could you explain why that is so in your country?

Leavitt: That is really not right, there is some opposition by certain religious groups to heart and liver transplantation because of the reason that you cannot start the operation until the heart stops beating, however, most religious authorities and certainly the chief rabbinate of Israel accept brain stem death. Cortical death is insufficient, but brain stem death is accepted, so heart and liver transplantation, and maybe lung transplantation too, are allowed. Heart transplantation is definitely performed in Israel.

Takebe: Thank you Dr Leavitt, I am afraid that we must really move on to Dr Clarke, who will talk about genetic testing of children. Thank you Dr. Clarke. The paper is now open for discussion.

Tranoy: Just a brief remark to a paper that I enjoyed very much. Norwegian geneticists are absolutely unwilling to do any kind of predictive or carrier status testing on children.

Clarke: I am pleased to hear it. I think it was interesting in our working party that we started out with a range of opinions, I suppose I knew where I stood, but we found a unanimity in the end that generally there should be a presumption against the testing unless there is medical benefit to the child.

Milunsky: Much of this morning has been spent discussing attitudinal questionnaires, and of course Prof. Macer has spent a huge amount of time and effort. I often wonder about the nature of these kinds of studies, that they more accurately reflect the state of ignorance of those being questions, rather than reflecting their true beliefs and attitudes that are being measured. Quite often one recognises the appalling lack of knowledge in human genetics for example among practising physicians in all countries. Once educated their true attitudes may be reflective of what they really think, and so I wonder about the scientific validity of these attitudinal studies, and I would be interested either now or later to hear how you or Prof. Macer respond to what is really a fundamental question about the value of such studies in a population not educated to respond.

Clarke: I agree absolutely with your comments about the limitations of questionnaire studies. I think one of the central purposes of this study was to draw attention of pediatricians and geneticists to the whole issue. And I think that has been very useful. The point that you are making is one that I tried to make in my talk, that is pediatricians are giving different answers to geneticists because they are answering hypothetically, never having faced these issues in practice. It is not that they morally or psychologically have no insight, rather it is that they have not thought through the issues, and I think that raising these issues within the profession gives them a chance to think through the issues before they are in a position to carry out the tests in a manner in which they might later regret. So I think there is a big difference between the population surveys that Prof. Macer has done and the one that has been done here, which I think has achieved a lot of its aims and is useful for the very reasons that you have just made.

Takebe: This afternoon we may have time to ask Prof. Macer to evaluate all those questionnaires and answers.

Billings: I just wanted to point out that the social issues committee of the American Society of Human Genetics is in the process of making a position statement on the genetic testing of children. Dr Wilfond is in the position of heading this. The current document reflects many of the concerns that you expressed.

Clarke: I am very grateful to hear that actually. At the start of this working party work we wrote to the American Society of Human Genetics, and the only documentation they had on childhood testing were some policy reports that they had on newborn screening in 1970s, but nothing relevant to these wider issues. I think it is very nice if they are doing this also now.

Takebe: Thank you Dr Clarke. The next presentation will be by Dr Shirai, talking about genetic counseling for muscular dystrophy. Thank you, the paper is open for discussion. May I ask one point. I assume most of the clients are women, are there any sex differences in response because muscular dystrophy is an X-linked trait?

Shirai: About 60% of the respondents were women, and 40% were men, but at this time the total number is not large so I combined both sexes.

Takebe: Any more comments?

Morioka: Do you have an impression that Japanese genetic counseling is not client-centred?

Shirai: Unfortunately I think so. Firstly, based on the results of this survey, many respondents feel that if the doctor provides information, it is only about the condition and the short term prognosis of the disease, and they don't have enough time. I suppose that they are not so interested in the psychological and social, or any other problems that the patient has. So many doctors mentioned, and as Prof. Takebe mentioned, the best way to change the situation is to increase the number of genetic counselors in Japan.

Takebe: That topic will be discussed by Dr Osawa, who is our next speaker. She will speak on the general public's view of genetic counseling. Are there any questions?

Makino: The answers of the staff are rather peculiar to that group, and you said in your conclusion that you thought that this was because they had more knowledge of handicapped children. Could you please analyse this a little further? If you think this is the reason, do you think that if we increase the level of awareness for other groups as well their reactions would change?

Osawa: As you said, I think we have to analyse this further. But if we look at the various answers, we divide the patient's into one group, but the patient's parents answers and the answers of the staff working with handicapped children were relatively similar. Coping and learning how to respond with these children probably changes people's attitudes to them. Also I wonder if they had increased anxiety because they were given genetic information. I think this is the general trend we can see here, and I will study this more in depth.

Takebe: Thank you very much. We have one more paper by Prof. Joan Bodurtha, on human genetics and ethics education in the high school classroom. The presentation is open for questions and discussion.

Clarke: I was impressed overall by how little difference the educational intervention seemed to make, which was a bit disappointing. Have you got any ideas about how to take it further?

Bodurtha: Well we have another graduate student who is working with a longer course intervention, where high school students actually get a three week summer course in genetics, and we are seeing whether this group has different pre- or post-test responses. I think other experience with these sort of interventions certainly suggests that a one shot intervention is not terribly helpful in inducing change or sustaining it, so we don't have any allusions that this is really going to make a big difference. It really is fascinating though, for example, when you think about the choice of pictures in every lecture that you give, and if you start to think about your influence on their attitudes, not just sort of illustrating medical principles, you can influence their choices.

Takebe: Thank you very much. I am supposed to give conclusions, but since we are behind schedule I will postpone my statement to the afternoon. Let me remind you that there are posters outside this room, that cover essentially all figures and tables presented this morning's session. I'd like to ask Prof. Miwa to take over the chair for the next session. To next chapter
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