pp. 210-213 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.

Public attitudes to bioethical dilemmas in Russia

Vijay Kaushik, Institute of Philosophy, Russian Academy of Sciences, Moscow, RUSSIA

Darryl Macer, Eubios Ethics Institute, 31 Colwyn St, Christchurch, NEW ZEALAND*

*The results presented here come from the joint results and papers of Angeles T. Alora, Jayapaul Azariah, Hilda Azariah, Prasert Chatwachirawong, Ong Chin Choon, Vijay Kaushik, Frank Leavitt, Peerasak Srivines (in Ref. 2).


In this paper we will discuss some of the results from an International Bioethics Survey conducted in Russia by V. Kaushik, with the collaboration and support of D. Macer. The general characteristics of the survey and the samples are presented in the previous paper (Macer & Kato, p.204). The main objective of the survey was to study attitudes to bioethical dilemmas in Russia.

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 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 medicine and biomedical research.

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. The general public attitude was studied towards issues like genetic screening and gene therapy, discrimination against patients with mental disease and AIDS infection, trust in authorities, and privacy rights. These topics are relevant to the seminar, and are included here. The full results are reported by us elsewhere (1).

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. About 500 gift sets were distributed to the ordinary public. 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. General statistical information was gathered.

We found high support for government funded prenatal genetic screening (92%), and 80% of the respondents expressed willingness for such a test during their spouse's pregnancy. In a different question, 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. The data tables for all countries are shown in the paper by Macer in this book (p. 114-5). 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.

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, and 19% said that they were unwilling. 59% agreed for such therapy in the case the child has a fatal genetic disease, and 11% were unwilling. The major reasons cited were the same as for other countries (see Table 9 in Macer & Kato in the previous paper, p. 208). 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 (see Table 5 in Macer, p. 116).

More than 70% of the respondents expressed familiarity with someone who has a genetic or mental disease, as indicated in the accompanying paper (Table 3, 4 in Macer & Kato, p. 206). 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 (Macer, p.115).

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%). Depression was cited less frequently, however, part of this response may be because these first three were given on the questionnaire in Russia (see Table 3, 4 in Macer & Kato, p. 206). The feelings about people suffering from these diseases were also asked. The results for schizophrenia are in Table 1, for all the countries of the International Survey (1). 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 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 (1). Similar to people with mental disease, most respondents expressed compassion and sympathy for persons with hemophilia (Table 2).

The feelings about people with AIDS are shown in Table 3. 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. The majority (96%) of them support the idea of revealing AIDS infection to a spouse or close relative. On the other hand, only 24% of the respondents agreed to reveal such information to an employer and 37% to an insurer (see Table in Macer, p. 113). 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. A few respondents even used words like "I would help them to die", "I would kill her no doubt", but the majority of respondents 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.


Table 1: (Q25) How do you feel towards people with the following mental diseases?* Schizophrenia

Schizophrenia
Public
Students
% of respondentsNZA JInT RIsNZ AJIn TPS HK
N329201 352419 68544650 96110435 183230 161235104
Not stated11.011.2 32.129.819.9 18.84410.4 21.835.138.8 13.932.326.8 33.7
Don't know7.27.6 7.48.63.7 5.345.2 14.610.113.7 1.73.211.1 16.4
Sad-Compassion32.432.0 15.621.731.3 57.71825.0 22.710.417.5 34.323.937.4 6.7
Want to help12.07.1 5.917.217.5 2.189.4 5.58.315.3 13.913.63.0 9.6
Happy for therapy6.37.1 14.110.65.7 1.165.2 3.68.35.5 5.29.02.6 0
People are same8.59.6 5.01.42.8 4.0211.5 5.56.81.1 3.55.210.6 9.6
Unlucky1.32.0 2.11.01.6 2.403.1 00.20.6 0.41.30 1.0
Admire00 000.3 0.5000 000.4 000
Helpless2.22.5 1.81.90.2 0.800 0.90.72.7 1.302.6 2.9
Other0.91.0 1.82.90.6 6.901.0 01.72.2 00.70.4 0
Rejection1.92.0 2.41.03.5 5.641.0 0.93.80.6 8.32.65.1 1.9
Can't understand4.73.1 0.91.40.9 0.328.3 1.82.81.1 0.40.71.7 1.9
Own fault/depends 2.2 3.13.20 1.30.50 3.11.82.1 03.01.3 01.9
Afraid & Risk9.111.7 8.01.49.0 10.91216.7 20.99.21.1 11.76.54.7 14.4


Table 2: (Q20) How do you feel towards people that have the following genetic diseases?* Hemophilia

Hemophilia
Public
Students
% of respondentsNZA JInT RIsNZ AJIn TPS HK
N329201 352419 68444650 96110435 183232 161235104
Not stated8.37.7 28.634.614.6 23.5426.3 14.627.926.8 10.328.730.2 21.1
Don't know3.15.1 6.97.44.5 3.724.2 6.47.77.1 2.61.33.0 3.9
Sad-Compassion49.442.6 23.127.250.6 80.82644.2 25.334.230.1 60.833.838.7 26.9
Want to help6.85.1 5.83.313.0 1.126.3 3.610.18.7 10.07.03.4 6.7
Happy for therapy4.06.2 14.27.63.1 1.1102.1 1.86.36.6 2.64.51.3 1.9
People are same21.320.5 6.94.12.6 3.11631.6 37.39.87.7 5.216.614.5 9.6
Unlucky1.54.1 0.61.70.6 1.101.1 3.60.22.7 0.91.30 8.7
Admire0.60.5 0.600.2 001.1 0.90.90 0.40.60 0
Helpless1.90.5 1.72.90.4 0.600 1.81.62.7 0.903.8 9.6
Other2.55.1 0.96.72.3 4.202.1 1.80.24.4 1.30.61.3 3.9
Rejection0.31.0 0.300.4 1.700 000.60.9 000
Can't understand00 00.20.2 000 0000 00.40
Own fault/depends 00 0.600.4 000 00.70.6 0.400.9 0
Afraid & Risk*0.3 1.003.8 5.30.92 1.10.90.2 2.23.55.7 2.17.7

*"Afraid & Risk" in Hemophilia usually means afraid of them hurting themselves, not others.


Table 3: (Q22) How do you feel towards people that are HIV-infected or have AIDS?*

AIDS
Public
Students
% of respondentsNZA JInT RIsNZ AJIn TPS HK
N329201 352535 68244650 96110435 314230 161235104
Not stated6.35.6 22.818.77.6 24.0405.2 3.622.415.6 4.418.511.1 9.6
Don't know2.80.5 3.51.32.6 6.020 3.63.13.2 1.70.61.7 0
Sad-Compassion34.130.8 22.419.836.1 58.52027.1 19.117.925.2 31.331.224.3 15.4
Want to help4.15.1 6.35.616.6 1.702.1 3.69.98.3 17.412.73.4 3.9
Happy for therapy1.31.5 7.56.51.5 0.660 0.93.35.7 1.33.22.1 0
People are same8.89.1 11.23.69.3 4.3419.8 8.220.35.4 13.510.28.1 5.8
Unlucky2.55.6 1.72.41.5 1.403.1 0.90.21.9 3.51.92.1 1.0
Admire0.60 0.301.0 000 0.90.20 1.30.60 0
Helpless1.62.5 1.75.00.7 0.944.2 4.61.74.8 0.43.22.6 6.7
Other0.60.5 2.03.41.3 10.200 1.80.72.6 0.4001.0
Rejection3.82.0 1.78.63.8 4.682.1 3.62.13.5 3.02.65.1 8.9
Can't understand0.30 0.90.91.0 000 000.60 00.90
Own fault/depends 18.8 25.213.613.8 11.04.38 12.515.515.1 14.317.410.8 38.723.1
Afraid & Risk14.1 11.64.39.9 5.06.58 22.933.63.2 8.93.93.8 6.025.0


Figure 1: Russian responses to a spouse or friend infected with AIDS (Not on-line)

Table 4: Trust in authorities*

(Q29) Suppose that a number of groups made public statements about the benefits and risks of biotechnology products. Would you have a lot of trust, some trust, or no trust in statements made by...?
Public
Students
TrustNZA JInT RIsNZ AJIn TPS HK
Government agencies
A lot58 825335 2477 4252820 3437
Some5261 484763 39386568 374966 625855
No4331 4428456 382825 5926618 88
Consumer agencies
A lot2413 122343 3328288 82341 17625
Some5861 655754 44425854 605155 686358
No1826 2320323 301438 3226415 3117
Companies making biotechnology products
A lot54 62186 2034 5251315 78
Some4452 434770 31284953 385475 576657
No5144 51322263 524843 57211228 2735
Environmental groups
A lot2120 1547- 53541814 752- 573545
Some6864 6044- 37367373 5237- 426050
No1116 259-10 10913 4111-1 55
University professors
A lot2530 123842 35425054 104729 463047
Some6560 615357 50484843 623969 526547
No1010 279115 1023 281422 56
Medical doctors
A lot3330 124860 55465558 105555 684248
Some6064 584338 35504440 643744 295449
No76 309210 412 26813 43
Farmers or farm groups
A lot69 6-7- 2866 772718 66
Some6969 50-67 -507070 501576 715443
No2522 44-26- 222424 43131711 4051
Dietitians or nutritionists
A lot2421 6-25 -402821 56825 422020
Some6669 54-67 -506569 561865 536671
No1010 40-8- 10710 3914105 149


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. The results in Table 4 show the results for trust in a number of professions and groups. Despite the lower trust shown in the government in Russia, they had a level of trust in medical doctors. The result is most striking when we compare it to Japan, in which doctors were not trusted. In fact it appears Japanese do not trust anyone very much, but the biggest difference with the other countries was that doctors and university professors were mistrusted, especially so by medical students. Whereas Russians show great trust in doctors, and a high level of trust in professors and environmental groups. In no country do many people say that they trust the government. Conclusions

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. In conclusion, we could say that 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.

This is the first major survey about bioethical issues among the Russian people we are aware of, and the results revealed interesting attitudes. The full survey results, examples of the comments, and discussion of all the implications of these results, are to be found in our papers in Ref. 1. The survey was funded by the Eubios Ethics Institute.


References
1. Macer, D.R.J. Bioethics for the People by the People (Christchurch, N.Z.: Eubios Ethics Institute 1994).

Statistical Note: The word "significant" when used in this paper means it was significant at least at P < 0.05.


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