pp. 210-213 in Intractable Neurological Disorders, Human Genome Research and Society.

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).

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.

Schizophrenia	Public							Students
% of respondents	NZ	A	J	In	T	R	Is	NZ	A	J	In	T	P	S	HK
N	329	201	352	419	685	446	50	96	110	435	183	230	161	235	104
Not stated	11.0	11.2	32.1	29.8	19.9	18.8	44	10.4	21.8	35.1	38.8	13.9	32.3	26.8	33.7
Don't know	7.2	7.6	7.4	8.6	3.7	5.3	4	5.2	14.6	10.1	13.7	1.7	3.2	11.1	16.4
Sad-Compassion	32.4	32.0	15.6	21.7	31.3	57.7	18	25.0	22.7	10.4	17.5	34.3	23.9	37.4	6.7
Want to help	12.0	7.1	5.9	17.2	17.5	2.1	8	9.4	5.5	8.3	15.3	13.9	13.6	3.0	9.6
Happy for therapy	6.3	7.1	14.1	10.6	5.7	1.1	6	5.2	3.6	8.3	5.5	5.2	9.0	2.6	0
People are same	8.5	9.6	5.0	1.4	2.8	4.0	2	11.5	5.5	6.8	1.1	3.5	5.2	10.6	9.6
Unlucky	1.3	2.0	2.1	1.0	1.6	2.4	0	3.1	0	0.2	0.6	0.4	1.3	0	1.0
Admire	0	0	0	0	0.3	0.5	0	0	0	0	0	0.4	0	0	0
Helpless	2.2	2.5	1.8	1.9	0.2	0.8	0	0	0.9	0.7	2.7	1.3	0	2.6	2.9
Other	0.9	1.0	1.8	2.9	0.6	6.9	0	1.0	0	1.7	2.2	0	0.7	0.4	0
Rejection	1.9	2.0	2.4	1.0	3.5	5.6	4	1.0	0.9	3.8	0.6	8.3	2.6	5.1	1.9
Can't understand	4.7	3.1	0.9	1.4	0.9	0.3	2	8.3	1.8	2.8	1.1	0.4	0.7	1.7	1.9
Own fault/depends	2.2	3.1	3.2	0	1.3	0.5	0	3.1	1.8	2.1	0	3.0	1.3	0	1.9
Afraid & Risk	9.1	11.7	8.0	1.4	9.0	10.9	12	16.7	20.9	9.2	1.1	11.7	6.5	4.7	14.4

Hemophilia	Public							Students
% of respondents	NZ	A	J	In	T	R	Is	NZ	A	J	In	T	P	S	HK
N	329	201	352	419	684	446	50	96	110	435	183	232	161	235	104
Not stated	8.3	7.7	28.6	34.6	14.6	23.5	42	6.3	14.6	27.9	26.8	10.3	28.7	30.2	21.1
Don't know	3.1	5.1	6.9	7.4	4.5	3.7	2	4.2	6.4	7.7	7.1	2.6	1.3	3.0	3.9
Sad-Compassion	49.4	42.6	23.1	27.2	50.6	80.8	26	44.2	25.3	34.2	30.1	60.8	33.8	38.7	26.9
Want to help	6.8	5.1	5.8	3.3	13.0	1.1	2	6.3	3.6	10.1	8.7	10.0	7.0	3.4	6.7
Happy for therapy	4.0	6.2	14.2	7.6	3.1	1.1	10	2.1	1.8	6.3	6.6	2.6	4.5	1.3	1.9
People are same	21.3	20.5	6.9	4.1	2.6	3.1	16	31.6	37.3	9.8	7.7	5.2	16.6	14.5	9.6
Unlucky	1.5	4.1	0.6	1.7	0.6	1.1	0	1.1	3.6	0.2	2.7	0.9	1.3	0	8.7
Admire	0.6	0.5	0.6	0	0.2	0	0	1.1	0.9	0.9	0	0.4	0.6	0	0
Helpless	1.9	0.5	1.7	2.9	0.4	0.6	0	0	1.8	1.6	2.7	0.9	0	3.8	9.6
Other	2.5	5.1	0.9	6.7	2.3	4.2	0	2.1	1.8	0.2	4.4	1.3	0.6	1.3	3.9
Rejection	0.3	1.0	0.3	0	0.4	1.7	0	0	0	0	0.6	0.9	0	0	0
Can't understand	0	0	0	0.2	0.2	0	0	0	0	0	0	0	0	0.4	0
Own fault/depends	0	0	0.6	0	0.4	0	0	0	0	0.7	0.6	0.4	0	0.9	0
Afraid & Risk*	0.3	1.0	0	3.8	5.3	0.9	2	1.1	0.9	0.2	2.2	3.5	5.7	2.1	7.7

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

AIDS	Public							Students
% of respondents	NZ	A	J	In	T	R	Is	NZ	A	J	In	T	P	S	HK
N	329	201	352	535	682	446	50	96	110	435	314	230	161	235	104
Not stated	6.3	5.6	22.8	18.7	7.6	24.0	40	5.2	3.6	22.4	15.6	4.4	18.5	11.1	9.6
Don't know	2.8	0.5	3.5	1.3	2.6	6.0	2	0	3.6	3.1	3.2	1.7	0.6	1.7	0
Sad-Compassion	34.1	30.8	22.4	19.8	36.1	58.5	20	27.1	19.1	17.9	25.2	31.3	31.2	24.3	15.4
Want to help	4.1	5.1	6.3	5.6	16.6	1.7	0	2.1	3.6	9.9	8.3	17.4	12.7	3.4	3.9
Happy for therapy	1.3	1.5	7.5	6.5	1.5	0.6	6	0	0.9	3.3	5.7	1.3	3.2	2.1	0
People are same	8.8	9.1	11.2	3.6	9.3	4.3	4	19.8	8.2	20.3	5.4	13.5	10.2	8.1	5.8
Unlucky	2.5	5.6	1.7	2.4	1.5	1.4	0	3.1	0.9	0.2	1.9	3.5	1.9	2.1	1.0
Admire	0.6	0	0.3	0	1.0	0	0	0	0.9	0.2	0	1.3	0.6	0	0
Helpless	1.6	2.5	1.7	5.0	0.7	0.9	4	4.2	4.6	1.7	4.8	0.4	3.2	2.6	6.7
Other	0.6	0.5	2.0	3.4	1.3	10.2	0	0	1.8	0.7	2.6	0.4	0	0	1.0
Rejection	3.8	2.0	1.7	8.6	3.8	4.6	8	2.1	3.6	2.1	3.5	3.0	2.6	5.1	8.9
Can't understand	0.3	0	0.9	0.9	1.0	0	0	0	0	0	0.6	0	0	0.9	0
Own fault/depends	18.8	25.2	13.6	13.8	11.0	4.3	8	12.5	15.5	15.1	14.3	17.4	10.8	38.7	23.1
Afraid & Risk	14.1	11.6	4.3	9.9	5.0	6.5	8	22.9	33.6	3.2	8.9	3.9	3.8	6.0	25.0

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
Trust	NZ	A	J	In	T	R	Is	NZ	A	J	In	T	P	S	HK
Government agencies
A lot	5	8	8	25	33	5	24	7	7	4	25	28	20	34	37
Some	52	61	48	47	63	39	38	65	68	37	49	66	62	58	55
No	43	31	44	28	4	56	38	28	25	59	26	6	18	8	8
Consumer agencies
A lot	24	13	12	23	43	33	28	28	8	8	23	41	17	6	25
Some	58	61	65	57	54	44	42	58	54	60	51	55	68	63	58
No	18	26	23	20	3	23	30	14	38	32	26	4	15	31	17
Companies making biotechnology products
A lot	5	4	6	21	8	6	20	3	4	5	25	13	15	7	8
Some	44	52	43	47	70	31	28	49	53	38	54	75	57	66	57
No	51	44	51	32	22	63	52	48	43	57	21	12	28	27	35
Environmental groups
A lot	21	20	15	47	-	53	54	18	14	7	52	-	57	35	45
Some	68	64	60	44	-	37	36	73	73	52	37	-	42	60	50
No	11	16	25	9	-	10	10	9	13	41	11	-	1	5	5
University professors
A lot	25	30	12	38	42	35	42	50	54	10	47	29	46	30	47
Some	65	60	61	53	57	50	48	48	43	62	39	69	52	65	47
No	10	10	27	9	1	15	10	2	3	28	14	2	2	5	6
Medical doctors
A lot	33	30	12	48	60	55	46	55	58	10	55	55	68	42	48
Some	60	64	58	43	38	35	50	44	40	64	37	44	29	54	49
No	7	6	30	9	2	10	4	1	2	26	8	1	3	4	3
Farmers or farm groups
A lot	6	9	6	-	7	-	28	6	6	7	72	7	18	6	6
Some	69	69	50	-	67	-	50	70	70	50	15	76	71	54	43
No	25	22	44	-	26	-	22	24	24	43	13	17	11	40	51
Dietitians or nutritionists
A lot	24	21	6	-	25	-	40	28	21	5	68	25	42	20	20
Some	66	69	54	-	67	-	50	65	69	56	18	65	53	66	71
No	10	10	40	-	8	-	10	7	10	39	14	10	5	14	9

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.

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