India is the world's second most populated country and will soon become the first. It represents one nearly one fifth of the world's population, and is the major developing country. It is also a land of diverse religions, which makes a survey to look at the bioethical reasoning more interesting. There have been several surveys on medical genetics issues published recently (Verma et al., 1992, 1994) which provide some comparative background.
The survey was conducted in English among a mixture of the general public, university staff and students. There was a reasonably high response rate, with over 800 responses. Several hundred surveys using several different questions were also tried, to look at the affects of varying the question wording. In the analysis of these surveys we have grouped both sets of surveys together into one sample. The surveys were sent to Japan for categorisation and data input (D.M.).
The age, sex, marital status, and children were mixed, and 21% were from rural areas.There was still strong bias towards more highly educated people in the sample as can be seen in the data tables from the number with higher education. Only 2% said they had no religion, and most said that religion was very (33%) or somewhat (29%) important to them. This is consistent with the strong religious beliefs in Thailand. 97% said they were Asian, with 3% giving other origins. The samples were mainly in the southern states of India, especially Tamil Nadu, Kerala, and Andrea Pradresh, which is reflected in the relatively high number of Christians in the sample (35%). However, given that Verma et al. (1994) found no religious difference in response between them samples of people associated with genetic counseling clinics in surveys in the Northern cities, this is not considered a general problem for extrapolation, and this is consistent with the general results here.
They valued the contribution of science and technology to life (Q1ab). They were very interested in science (Q3), and had a positive view towards the impact (Q4). They were aware of the specific areas of technology (Q5-7), except for gene therapy. In vitro fertilisation and genetic engineering were also less familiar than the other areas. They were very positive about computers, and 64-75% were positive about the other developments, with 58% being positive about in vitro fertilisation, and 51% agreeing with surrogacy (Q1h). They were most negative towards nuclear power (Q7), and otherwise did not express great concerns with these developments. The sample was reasonably positive towards patenting of all items except genes from humans (Q30). They were among the most trusting of the samples (Q29), following the general trends among the different authorities.
There was strong agreement (88%) with the statement that the natural environment has a valuable property that humans should not tamper with (Q1c), and 82% supported the animal rights statement (Q1i). The results of the environmental questions (Q2) suggest less concern than in most other samples, though half said they had sorted out items for recycling.
They answered the open questions about nature and life with similar comments and diversity to other samples. There was a reasonably high incidence of quotation of apparently trendy sayings about life. A number made comments about God in these two questions, and 19% mentioned God in the question of the image of life.
75% were positive about biotechnology, among the science developments (Q5-7), with 59% saying they had no concerns. 55% accepted plant-plant genetic engineering (Q9), and 40% accepted animal-animal (Q11), while 31% accepted animal-plant (Q10) and 17% human-animal (Q12) gene transfer. A high proportion cited reasons supporting these applications in their open comments, and the most common reason against them was that they were "unnatural", as in the other samples.
83% were aware that genetically modified organism were being used to produce foodstuffs (Q13), and they had little concern about food or medicine made from them (Q14). There was strong support for the specific examples of genetic engineering (Q31). 52% accepted the "sports fish", but this was significantly less than the other examples. 71% supported making milk from cows. The general support for genetic engineering products seems to be high, especially if they are claimed to be more healthy.
There was rejection of abortion in general (Q1f, 15% for, 71% against), but support for selective abortion of fetuses with congenital abnormalities (Q1g, 67% for, 19% against). There was support for prenatal genetic screening (Q16 - general, 80% yes, 8% no; Q17 - personal, 71% yes, 17% no), consistent with results of Verma et al. (1994). A similar proportion to other samples wrote comments suggesting economic benefits of such screening (Q16), and the highest proportion (45% - Q16) with comments that health care was a right or that the government should pay for the poor. There was also relatively high reasoning based on improvement of genes (Q16 - 9%, Q17 - 7%). In India there is well documented abuse of genetic screening for sex selection (Kusum, 1993; Kaushik in this book), which is consistent with the results of this survey. A few respondents made comments that it should not be used for sex selection, but otherwise the issue was not addressed here.
In the questions regarding privacy of genetic disease or HIV (Q21, 23), which asked who deserves to know that information, the Indian sample valued privacy of the person. They were more similar to Australasians, Russians and Japanese than to the other Asian countries in this. 41% said that they knew someone with a genetic disease (Q19), and 60% said they knew someone with a mental disease (Q24), the mental disease frequency being a rather high value. The major genetic diseases cited were Down's syndrome, also a number of general comments about mental handicap.
The students were quite sympathetic and understanding of people with both genetic and mental diseases (Q20, 25). More people made comments that they would be happy for therapy for those people, than in the other samples, except for Japan. However, this could be a matter of wording of sympathy comments. About 8% expressed rejection of persons with HIV (Q22), the highest among the samples. There was some extra questions about disease in some of the surveys, like the Russian survey that were not in the general survey. There were 261 responses from this survey, with 57% being male. They did not agree that a three month old fetus had the right to live regardless of congenital abnormalities, with 20% strongly disagreeing, 25% disagreeing, 23% neither, 19% agreeing and 13% strongly agreeing. People were asked to list five hereditary diseases (See Verma et al., 1992), and the most common ones were diabetes, thalassemia, hemophilia, asthma, AIDS, colour blindness, heart disease and Down's syndrome, with baldness also being very common. This is an interesting picture of a genetic disease, especially as short-sightedness, which is more disturbing to ordinary life, was not listed. In a question whether they knew someone with a mental disease, 1.3% said so for themselves, 12% said for a family member, 18% for a friend and 15% for an acquaintance. 8% saw the cause of mental disease as genetic, 32% as environmental, 9% affected by childhood, 20% others or a mixture, and 31% said all were factors.
These respondents also expressed extreme feelings towards an AIDS infected friend or spouse, in a question the same as in the Russian survey. 52% of the respondents said that they would treat their friend in a similar fashion as before infection, 16% would see them more often, 13% would see them less often, and 19% didn't know. In a similar question, only 37% of married couples agreed to treat their spouse the same as before the disease, 19% said they would live in the same house but separately, 7% said they would live separately, 4% said that they would divorce them, and 20% were unable to decide what attitude they would have. The responses were rather more sympathetic compared to the Russian responses to this question, and in general the Indian respondents in the whole survey were sympathetic with those suffering from disease.
There was strong support for gene therapy, with 80% willing to undergo it themselves, and 88% willing for their children to undergo gene therapy to cure a usually fatal disease (Q26, 27). Half of the respondents wrote a comment saying that they wanted to save their life or their child's life as a reason for gene therapy, the highest response among all the samples. Otherwise the comments were generally similar to other samples. There was lower support for enhancement uses (Q28efg) than for therapeutic uses, suggesting some differentiation, but like Thailand, there was still many people supporting enhancement uses of gene therapy.
These results clearly show a positive view of technology, and in the case of gene therapy and enhancement some would say a too positive view of technology. The situation where infectious disease and poor living standards are common, together with existing abuses of genetic screening for sex selection suggest that people may seek hope in the form of science and technology. The most encouraging aspect of the survey from India may be the width and depth of the comments about life and nature that were expressed, which are found later in this book. For further background see the papers by Azariah earlier in this book, which explore the long history of bioethical thinking in India.
We want to especially thank Mr Gunasingh Masilamoni and Mr Thomson Jacob for their help in conducting the survey. We also thank others who distributed surveys, including Dr A.K. Tharien. We also thank Mr Shiro Akiyama, Ms Yukiko Asada, Mrs Nobuko Macer and Ms Miho Tsuzuki for assistance with data input.
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