Russia has been a focal point or world attention during the past few decades, and in particular during the era of Perestroika and Glasnost of the last few years. It's Imperial past, socialist revolution and present dissolution has greatly influenced world events. It would not be wrong to say that today Russia is at a crossroad. The transition from a state owned centralised economy towards a market economy has influenced every aspect of Russian life. Due to this, today, the general public in Russia confronts a wide range of dilemmas in every sphere of life including agriculture and medicine, and perhaps above all, in economy.
Recent advances in the field of biomedical technology and in the Human Genome Project have generated debates on issues such as experimentation on humans, genetics and techniques of reproduction, ownership and control of genetic information, and counseling techniques. While tremendous possibilities to enrich the quality of life have arisen, serious questions about the dangers of gene technology including ethical constraints, have also surfaced. This is the first major survey about bioethical issues among the Russian people we are aware of, and the results revealed interesting attitudes. Given the importance of communism in recent world history, this survey also presents us with a chance to see whether it has affected people's reasoning.
The International Bioethics Survey was conducted to a mixture of academics and public in Russian by V.K, with the collaboration and support of D.M. The academics elected included philosophers, molecular biologists, and general humanities and science, medical graduates. The comments were categorised by V.K. following the general categories, and the disc sent to D.M. for further analysis. Several different questions were used, but in this discussion the numbers used refer to the standard question numbers of the International Bioethics Survey.
In this survey, one thousand questionnaires were distributed by hand with stamped return envelopes in Moscow (500), Petrozavodsk (250) and Ufa (250), in May 1993. The questionnaires were written on seven one-sided sheets of A4 size paper stapled together. They had an introductory note on the first page of the questionnaire. About 500 gift sets (rubber, pencil, sharpener) were distributed to the ordinary public as an incentive for response, and considering local customs. The response rate of 43% was higher than expected, and suggests that the people were interested in being able to express their views on this subject. The sample included 56% from Moscow, 22% from Ufa, and 22% from Peterozavodsk.
64% of the respondents were female, and the sample was not very religious. The major religion was 55% Orthodox, with 20% Atheistic, 6.1% Muslim, 1.7% Buddhist, 1.2% Catholic, 0.9% Jewish, 0.7% Protestant, and 15% Other. There was a reasonably high level of education, with 28% postgraduates and 37% university graduates. The national origins were 75% Russian, 5.8% Tatar, 3.1% Ukranian, 2.7% Bellorussian, 1.8% Jeudish, 1.1% Armenian, 0.5% Polish, and 10% with other ethnic origins.
They valued the contribution of science and technology to life (Q1ab). They were generally interested in science, and a four response question was used with 2% responding "not at all", 31% "not very", 57% "interested", and 10% responded that they were "very interested" (Q3). Half of the respondents thought that science did about the same amount of good or harm (Q4, Q34 in Russian). They were aware of the specific areas of technology (Q5-7), except for gene therapy. Genetic engineering were also less familiar than the other areas. An extra attitudinal statement, that "Science interferes with the spiritual aspects of life" was added (Q2j in Russian), to which the response was 25.5% disagree strongly, 47.0% disagree, 15.9% neither, 9.8% agree, and 1.8% agree strongly; rather strong disagreement, consistent with a pro-science view of the respondents.
They were most positive about computers (Q6), with 92% considering them worthwhile, and for the other developments the proportion that considered them worthwhile were: 73% biotechnology, 70% in vitro fertilisation (IVF), 65% genetic engineering, 55% nuclear power, 46% pesticides. They were quite negative towards nuclear power and pesticides, and expressed a lot of concern (Q7).
The were positive towards IVF, and 77% agreed with surrogacy (Q1h). The sample was reasonably positive towards patenting of all items and especially towards an AIDS vaccine (Q30).
An interesting result is the amount of trust that people had in authorities who were making a statement about the safety of a product of biotechnology, for example a new drug. Despite the lower trust shown in the government in Russia, they show great trust in doctors and environmental groups, and a high level of trust in professors.
There was strong agreement (86%) with the statement that the natural environment has a valuable property that humans should not tamper with (Q1c), and 94%, the highest value of any country, supported the animal rights statement (Q1i). The results of the environmental questions (Q2) suggest less concern than in other samples, and the 67% who said they had saved energy is probably due to economic reasons more than environmental considerations. While there is mental agreement with protection of the environment, until economic conditions improve it is unlikely that much attention will be paid to this. They do have more concern over personal risk however (Q2e), and a general concern about pesticides and nuclear power (Q7), but not many write comments to explain what their concerns were.
They answered the open questions about nature and life with similar comments and diversity to other samples. The nature comment was moved to Q4 in the Russian survey, on the bottom of the front page. Russians drew more pictures in response for both these questions than most samples, like Thai respondents. In general their comments were of shorter length than in other samples, as can be seen in the examples, which were translated by V.K..
73% were positive about biotechnology, among the science developments (Q5-7), with 39% saying they had no concerns. 45% accepted plant-plant genetic engineering (Q9), and 32% accepted animal-animal (Q11), while only 16% accepted animal-plant (Q10) and 10% human-animal (Q12) gene transfer. Only half or less cited reasons supporting these applications in their open comments, and the most common reasons were conditional benefit or don't know, followed by "unnatural", and general fear. The reasons were generally similar to other samples.
77% were aware that genetically modified organism were being used to produce foodstuffs (Q13). The question used to examine concern about food or medicine made from them (Q14) was the older question that was used in 1990 in new Zealand and 1991 in Japan (Macer, 1992). The level of concern was intermediate between these two countries, with most concern being expressed for meat (69%), and least for medicines (46%).
There was the lowest level of support for the specific examples of genetic engineering (Q31) in Russia among all the samples. They did differentiate, with 13% accepting the "sports fish", while 23% supported making milk from cows, 35% healthier meat or tasty tomatoes, and 54% accepting disease resistant crops. The additional option of "pesticides' (Macer, 1992) was also included, and 52% approved, 23% disapproved, and 25% said don't know. Many expressed "don't know" responses to these questions, the highest proportion of the samples in the survey.
There was very high support for government funded prenatal genetic screening (Q16, 92% yes), and 80% of the respondents expressed willingness for such a test during their spouse's pregnancy (Q17). 87% of the respondents agreed with abortion of a 4 month old fetus with congenital abnormalities, while only 43% agreed to abortion of a 4 month old fetus in general (Q1fg). We should point out that there is a very high incidence of abortions in Russia in practise, so the general agreement of 43% is perhaps a little lower than expected.
More than 70% of the respondents expressed familiarity with someone who has a genetic or mental disease (Q19, 22). Such a high familiarity with disease may be responsible for the favourable opinion of prenatal genetic screening. This also explains the exceptionally common eugenic reasoning among the respondents who support prenatal genetic screening. Of the total respondents answering the question (in positive or negative manner) more than one tenth gave reasons such as "It will improve genes", the highest proportion among any of the countries. In Russia there was also the least number who cited fears of eugenics as a reason not to allow genetic screening.
There were some extra questions about disease in the Russian survey that were not in the general survey. The most common mental disease that people said that they knew someone with was schizophrenia (cited by 49% of those who wrote a disease name, or about one in nine of the total respondents), followed by epilepsy (13%) and alcoholism (12%). The history of mental disease classification and misuse of psychiatry is well known, and schizophrenia is the most familiar to the Russians. Depression was cited less frequently, however, part of this response may be because these first three were given on the questionnaire in Russia.
The feelings about people suffering from these diseases were also asked. The question was also asked for epilepsy, in which case 65% of the respondents expressed compassion, 7% sympathy, 5% were afraid, and 4% expressed rejection. In striking contrast, for alcoholic patients, 52% of the respondents expressed rejection, and only 18% showed feelings of compassion. Alcoholism is a major problem in Russia, that is why it was included. The results for the diseases asked in Russia are in Table 1.
The most common genetic disease cited was hemophilia (cited by 14% of respondents who gave an answer), and 13% of those who answered said they knew someone with Down's syndrome. Similar to people with mental disease, most respondents expressed compassion and sympathy for persons with hemophilia.
In another question people were asked what they thought was the cause of mental disease (multiple responses possible), and 81% said genetic, 52% environmental, 72% childhood, and 36% other causes also contributed. The responses in the other category that were written were: "alcoholism (1)", "social conditions (14)", "life itself", "emotional shock (2)", "stress (13)", "type of mentality", "different reasons (4)", "life itself", "the absence of reasons", "bad pregnancy", "at God's will", "stresses, hard intellectual activity", "life conditions", "sexual dissatisfaction", "karma reactions", "trauma", "many reasons (2)", "love, sex, health, work", "jealousy", "hard mental activity", "trauma, stress", "infection", "lack of character", "emotional shock", "unfavourable circumstances", "external condition", "interpersonal experience", "stress, afraid", "may be it is my destiny", "impossibility "to hold oneself in his hands"", "super-intense mental activity", "stress, drug habit", "poor living standards", "different diseases", "family affairs", "personal activity", "it is disease of mature age", "surroundings (2)", "karma reactions", "weak will", "family and business affairs", "overburdening", "unnatural social surroundings", "emotional shock", "these causes all together", "stress, surroundings", "personal relationships", "family and work affairs", "family affairs", "drunk parents (3)", "drugs", "family affairs", "bad living conditions (2)", "emotional shock", "social and political factors", "stress, afraid of uncertainty", "bad living conditions (2", "poor living standards", "social condition, family affair", "business related (2)", "group of causes (2)", "living conditions", "war, political organisations, socialism", "trauma", "political affairs", "emotional shock", "suffering", "personal life".
Table 1: How do you feel towards people with the following diseases? (N=446)
% of respondents
Hemophilia Down's syndrome AIDS Schizo-phrenia Epilepsy Alcoholism Not stated 23.5 19.9 24.0 18.8 21.7 17.9 Don't know 3.7 0.9 6.0 5.3 4.0 2.0 Sad/Compassion 80.8 60.5 58.5 57.7 58.1 19.3 Want to help 1.1 1.1 1.7 2.1 2.2 2.2 Happy for therapy 1.1 0.2 0.6 1.1 0.7 0.7 People are same 3.1 1.1 4.3 4.0 3.1 2.0 Unlucky 1.1 0.5 1.4 2.4 1.3 1.3 Admire 0 0 0 0.5 0 0 Helpless 0.6 0.2 0.9 0.8 0.5 0.5 Other 4.2 6.3 10.2 6.9 4.0 6.5 Rejection 1.7 6.7 4.6 5.6 2.7 43.7 Can't understand 0 0 0 0.3 0 0.2 Own fault/depends 0 0 4.3 0.5 0.5 2.5 Afraid & Risk 0.9 1.6 6.5 10.9 4.0 2.0
The privacy question gave similar responses to Australasia and Japan (Q21, Q23), with 92% support for sharing information with spouse, 71% support for sharing with the family, and very little support for sharing the information with an employer (22%) or insurer (37%).
The feelings about people with AIDS are shown in Table 1. The respondents in Russia actually seemed more sympathetic than in the other countries in the survey. The majority of Russians feel that AIDS will increase in the future, with 26.5% saying they thought it would greatly increase, 50.8% saying "somewhat", and only 9.0% saying that it will not increase much and 0% saying almost no increase, though 13.7% said "don't know". The majority (96%) of them support the idea of revealing AIDS infection to a spouse or close relative (Q23). On the other hand, only 24% of the respondents agreed to reveal such information to an employer and 37% to an insurer.
As shown in Figure 1, respondents also expressed extreme feelings towards an AIDS infected friend or spouse. Only 45% of the respondents said that they would treat their friend in a similar fashion as before infection. In a similar question, only 26% of married couples agreed to treat their spouse the same as before the disease, 14% said they would live in the same house but separately, 7% said that they would divorce them, and 38% were unable to decide what attitude they would have. The other responses that people wrote were:"try to help, but no pity", "depends on the concrete occasion" (2), "depends on the concrete situation", "saving family without sexual relations", "try to help", "more concern", "personal safety", "elimination of risk", "prevent infection (3)", "former relations except sex", "give help, but live separately", "I would help them to die", "I would kill her no doubt", "God forbid!", "it is not our problem", "it is difficult to imagine", "I have no wife", "we would decide together", but the majority of respondents (24 times) said that their actual response "depends on the reason for the illness". In the question on patenting, 91% of Russians said that they were in favour of awarding a patent for a drug or medical treatment for AIDS, in contrast to 45% who were in favour of a patent for human genetic material.
Figure 1: Behaviour after learning of HIV infection of a friend or spouse.
In the response to the question about gene therapy, 47% said that they would be willing to undergo such therapy personally if they had a usually fatal disease (Q26), and 19% said that they were unwilling. 59% agreed for such therapy in the case the child has a fatal genetic disease (Q27), and 11% were unwilling. The major reasons cited were the same as for other countries, but a third did not know, the highest of all samples. In the case of a specific example (Q28) there was more support, 83% supporting therapy to cure a fatal disease such as cancer, with 9% against. There was also support for correcting an inherited gene in children, but rejection of enhancement as in other countries (Q28).
It seems that seven decades of Communist rule have not affected people's attitudes to fundamental problems of life and health, except that they support socialised medicine. It is not unusual to see people expressing their religious and personal beliefs these days, and one can easily notice the growing influence of the Orthodox church on general public opinion, however there was little religious influence in responses. The Russian public seems to be aware of current bioethical dilemmas and reflects a rational or pragmatic attitude to the issues of genetic screening and gene therapy. There is a reasonable degree of discretion used in the enhancement questions of genetic engineering, and also quite a lot of uncertainty.
In the future it is hoped that further surveys can be conducted in the diverse regions of the former USSR, to explore any religious and geographical differences, and to follow the rapid changes in the economy, politics and living conditions in Russia. There have been few public opinion surveys in these issues, and it is interesting why many people said "don't know", especially given the generally high educational background of the sample. Whether they are thinking about the choices, or don't know understand the question at a more basic level is for further analysis.
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