pp. 160-162 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.

The common people's viewpoint on handicaps and heredity

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

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

R.K. Marvah, Postgraduate Institute of Medical Education and Research, Chadigarh, INDIA

Y.R. Ahuja, SMT Institute for Research in Mental Retardation, Bombay, INDIA

Krishna C. Malhotra, Bhagwan Mahavir Medical Research Center, Hyderabad, INDIA

Aparna P. Parikh, Indian Statistical Institute, Calcutta, INDIA

S. Sharma, Professor, Dept. of Pediatrics, All India Institute of Medical Sciences, New Delhi, INDIA

We ascertained the views of 1212 common people on handicaps and hereditary, and related ethical issues, to help in planning preventive and rehabilitative measures for the handicapped in India. The distribution of subjects was: Delhi 275, Chandigarh 300, Hyderabad 300, Bombay 200 and Calcutta 137. There were 334 pregnant women, 535 normal persons with no handicapped persons in their family, and 343 parents with a handicapped child. The subjects were questioned about handicaps in general. Seventy percent of the subjects were interviewed, and 30% filled in the questionnaire themselves. There were 76.8% female and 23.2 % male respondents. Hindus were 74.8%, Muslims 8.5%, Christians 5.5%, Sikhs 8.8% and other religions 2.4%.

Occupations of the subjects were: housewives 45.9%, service 32.5%, students 18.9%, business 2.5% and professionals 0.3%. Marital status was 77.4% married, 22.6% single. Consanguinity was present in 8.7% of marriages. Per capita income was >Rs.1000 per month in 70.9%, Rs.500-1000 in 22.5%, and The majority (86.4%) of the respondents agreed entirely that the welfare of a handicapped child should not be secondary to that of a healthy child, and 81.8% agreed that they would spend money equally on a healthy or handicapped child. The majority (85.7%) stated that parents and siblings should take care of the handicapped, while 41.7% gave second priority to local/state government. The majority of respondents believed that rehabilitative facilities in their locality were very poor (53.9%). A majority (71%) agreed entirely that "it is not difficult for the community to build facilities for the handicapped". A majority (91.8%) said that education is very useful for the handicapped. A majority believed that the handicapped person can adapt to an appropriate occupational job, and the majority (82.6%) agreed that the handicapped should have contact with healthy children, in addition to their own group.

The majority (> 85%) gave correct responses with regard to factors which cause birth or developmental defects. 37.1% responded that they would plan to bear a baby if there was no risk of an abnormal child, while 25.1% would do so only if the risk was <10%. 37.9% would prefer an abortion even if there was 1% risk of abnormality in the fetus, while 17.9% would do so only if the risk was 100%.

31.8% of subjects agreed entirely that the fetus with an abnormality has a right to survive, the commonest reason for this being that life is given by God (58%), followed by the reason that life should be preserved and respected (47.4%). However, 48.8% of subjects disagreed entirely with this view, the commonest reason being that it is not good for an abnormal child to come into this world, followed by "a handicapped child has low value as a human being" (41.6%).

In case of a suspected disorder of the fetus, 40.8% of the people agreed that abortion should be recommended, while 34.3% responded that abortion should be avoided in some cases. Even if facilities for rehabilitation improved, 34.8% of the people would be willing to abort an abnormal fetus.

Of 1095 subjects who responded, 42.0% had thought that "hereditary" can be a cause of disease, while 10.3% felt that it cannot cause disease. The vast majority of the people said they learnt about genetics in school from their teachers. 42.4% of the subjects considered "genetics" as good, while 31.8% considered it as bad. 61.4% of subjects felt "hereditary" to be scientific as against 13.5% who considered it to be mysterious. Of 748 subjects who responded, 32.8% believed that most congenital disorders were nongenetic, while an almost equal number (29.1%) believed that they were mostly genetic. The majority of subjects correctly responded that pneumonia is nongenetic (71.3%) and diabetes mellitus is genetic (68.2%), while the majority did not know whether colour blindness, Down's syndrome or thalassemia are genetic or nongenetic.

A frequency of 2% in the general population was considered "very high" by the majority (58.6%). Even a 1% risk of recurrence was considered high by 32.8% of the subjects. Of the factors which were felt to contribute to degree of risk, the most common was severity of disease (51.4%), the next being the possibility of treatment, while socio-economic burden received a low priority. When asked what they would do if the person they had chosen to marry had a handicapped member in their family, 37.7% replied that they would consult a doctor, while an almost equal number (37.5%) said they would get married as the concerned person was normal. Only 10.1% said they would give up the planned marriage. The majority (64%) agreed that consanguineous marriages should be avoided, because it may have harmful effects on the offspring. Almost two thirds had heard about prenatal diagnosis: 42.2% learning about it from health professionals, and 35.7% from newspapers.

If a couple already had one child with Down's syndrome, most women said they would try for prenatal diagnosis in the next pregnancy, but would continue the pregnancy if prenatal diagnosis was not available. If the fetus was diagnosed to be abnormal on prenatal diagnosis, the majority (72%) said they would opt for abortion, while 11.2% said they would bear the child.

Surprisingly, a majority (70.3%) would not resort to prenatal diagnosis of sex to have a boy, as they believed that this would be discrimination between sexes (94%). However, 14.7% agreed to do so. The reasons for agreeing were: to continue family lineage (67.7% first preference), have a male child to support the family in old age (51.6% second preference), and reducing economic burden of dowry (25% third preference). 56.6% considered prenatal diagnosis of sex to be justified when parents only have daughters, are poor, or belong to a caste where dowry is essential.

A majority (62%) said they would be very worried if they were carriers of a deleterious gene. Most agreed to get tested for carrier status (85.5%). A majority also agreed that they would recommend siblings to be tested for carrier status. For timing of carrier testing, first preference was given to before marriage (32.2%), with an almost equal number (28.8%) opting for testing after marriage, but before pregnancy. The commonest third preference was for the test to be done during pregnancy.

In the event of a high risk of recurrence, 33.9% would accept adoption, 26.4% use of contraception, while 24.8% artificial insemination/ovum donation.

Conclusions which emerge from this preliminary analysis are that teaching of genetics at school should be strengthened. On most issues the people had the correct ethical viewpoint. Most of the subjects were agreeable for prenatal diagnosis, and abortion of an abnormal fetus. The majority did not favour prenatal diagnosis of sex for social reasons although they considered this to be justified under special circumstances. Because of the heavy burden of disease, carrier testing was favoured.

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