pp. 152-159 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.

A preliminary report on an opinion survey on handicapped and heredity in Thailand

Pinit Ratanakul,
Professor, Mahidol University, THAILAND


This is only a preliminary observation. The subjects of the study are limited to those living in Bangkok. Medical/nursing students and physicians are excluded simply because the study is intended to focus only on general public outside medical/nursing profession.

600 questionnaires were distributed to people of various socio-economic backgrounds with differences in sex, age, education, and occupation. The subjects have no handicapped children in their families. Only 500 questionnaires were returned. There were 389 men (77.8%) and 111 women (22.2%), both married and unmarried. Among them there were 196 of age range 41-50 years (39.2%), 131 from 31-40 years (26.2%), 97 from 21-30 years (19.4%), 72 from 51-60 years (14.4%) and 4 people of over 60 years (0.8%). For educational backgrounds, there were 5 who had up to elementary level (1.0%), 142 had up to secondary level (28.4%), 73% had diploma level (14.6%), 250 had B.A. level (50.2%), and 29 had post graduate level education (5.8%). For occupation, there were 194 in government service (38.8%), 29 in state enterprises (5.8%), 243 in private enterprise (48.6%) and 34 in other occupations (6.8%), such as students, traditional healers and housewives.


Data collected

Questionnaire 1: What do you think of the handicapped? For the following, please circle the number on the scale which best fits your opinion.

Q1. Do you approve or disapprove of the following opinion? I feel sympathy for them, but I am unwilling to have contacts with them and their families.
1 Disapprove strongly 113 22.6%
2 Disapprove somewhat 153 50.6%
3 Uncertain 92 18.4%
4 Approve somewhat 37 7.4%
5 Approve strongly 5 1.0%

Q2. Do you approve or disapprove of the following opinion? I would prefer to use more money on healthy children than on handicapped children.
1 Disapprove strongly 219 43.8%
2 Disapprove somewhat 208 41.6
3 Uncertain 42 8.4%
4 Approve somewhat 27 5.4%
5 Approve strongly 4 0.8%

Q3. Do you approve or disapprove of the following opinion? We have to avoid a consanguineous marriage.
1 Disapprove strongly 19 3.8%
2 Disapprove somewhat 23 4.6%
3 Uncertain 64 12.8%
4 Approve somewhat 171 34.2%
5 Approve strongly 223 44.6%

Q4. Do you approve or disapprove of the following opinion? A fetus that is less than three months has the right to live regardless of congenital abnormalities.
1 Disapprove strongly 78 15.6%
2 Disapprove somewhat 109 21.8%
3 Uncertain 194 38.8%
4 Approve somewhat 88 17.6%
5 Approve strongly 31 6.2%

Q5. If your answer on question 4 is "agree strongly" or "agree somewhat", please answer the following question. On what ground do you believe an abnormal fetus has the right to live? Please select one from the following four alternatives and circle the number of your choice.
1 Whether or not it has congenital abnormalities, all human beings are given the gift of life from God. 12 2.4%
2 Human life should be respected no matter what the circumstances are. 233 46.6%
3 There are a lot of handicapped persons who can live happily with the support of people who care about them. 235 47.0%
4 Other reasons. Please state: e.g. they have the ability to work 20 4.0%

Q6. If your answer on question 4 is "disapprove strongly" or "disapprove somewhat", please answer the following question. On what ground do you feel an abnormal fetus does not have the right to live? Please select one from the following four alternatives and circle the number of your choice.
1 Once born, the child will have an unhappy life 228 45.6%
2 The life of an handicapped individual is not as valuable as the life a normal human being 134 26.8%
3 The family will suffer a cruel psychological and financial burden 60 12.0%
4 The handicapped person is a burden on our present society 61 12.2%
5 Other reason (please state) 17 3.4%

Q7. If you were planning to get married and discovered that your fiance's or fiancee's family has a history of the handicapped, how would you handle it?
Please select one from the following five alternatives and circle the number of your choice.
1 I definitely would break off my marriage plans 31 6.2%
2 I probably would break off my marriage plans 56 11.2%
3 Uncertain 210 42.0%
4 I probably would go through with the marriage 107 21.4%
5 I definitely would go through with the marriage 96 19.2%

Q8. Whose duty is it to look after the handicapped who cannot take care of themselves for a lifetime? Please choose the three most important subjects, and number them according to your priority:
National government 111 22.2%
Local government 11 2.2%
Parents, siblings 265 53%
Relatives 26 5.2%
Acquaintances, neighbourhood, community 24 6.8%
Private voluntary groups 15 3.0%
Other (please state) 38 7.6%


Questionnaire 2: What you think of hereditary disorders

Q1. Have you ever thought about "hereditary"? Please circle the number on the scale which best fits your opinion.
1 Interested very much 89 17.8%
2 Interested somewhat 226 45.2%
3 Uncertain 49 9.8%
4 Not interested so much 115 23.0%
5 Not interested at all 21 4.2%

If your answer on question 1 is "very interested" or "somewhat interested", please answer the following questions 2 and 3.

Q3. How did you get information on "hereditary"? Please select one from the following, and circle the number of your choice.
1 Newspapers 84 16.8%
2 Radio 36 7.2%
3 Television 131 26.2%
4 Magazines 167 33.4%
5 Other sources (please state) 82 16.4%

Q4. How do you feel about "hereditary"? For the following five paired adjectives, please circle the number on the scale which best fits your feeling, respectively.
1 very much; 2 somewhat; 3 uncertain; 4 somewhat; 5 very much
GOOD BAD: 119 135 112 89 77
DIFFICULT EASY: 86 162 121 89 63
BRIGHT DARK: 82 144 114 102 80
PREDETERMINED ACCIDENTAL: 109 141 112 78 78
MYSTERIOUS SCIENTIFIC: 101 108 114 100 94

Q5. Please name five hereditary diseases you know. The five most common responses were: diabetes, thalassemia, hemophilia, mental retardation, psychopathy.

Q6. Do you think that hereditary causes congenital disorders? Please select one from the following five alternatives and circle the number of your choice.
1 All congenital disorders are caused by hereditary 30 6.0%
2 Most congenital disorders are caused by hereditary 204 40.8%
3 About half of congenital disorders are caused by hereditary 169 33.8%
4 Most congenital disorders are not caused by hereditary 169 33.8%
5 No congenital disorders are caused by hereditary 17 3.4%

Q7. How do you estimate the incident rate for congenital disorders (including hereditary diseases) among newborns?
1. 1/10,000 69 13.8%
2. 1/1,000 105 21.0%
3. 1/500 44 8.8%
4. 1/100 107 21.4%
5. 1/20 25 5.0%
6. Uncertain 150 30.0%

Q8. What frequency of a congenital disorder do you think as a high risk?
1. 2% 107 21.4%
2. 5% 97 19.4%
3. 10% 108 21.6%
4. 20% 92 18.4%
5. 50% 96 19.20%

Q9. Suppose that a certain anomaly occurs with 2% frequency in the general population. How do you estimate the occurrence risk when your physician tells you that you have five times higher chance of having an afflicted child? Please select one from the following five alternatives and circle the number of your choice.
1 Very high risk 82 16.4%
2 Somewhat high risk 248 49.6%
3 Uncertain 83 16.6%
4 Somewhat low risk 62 12.4%
5 No risk at all 25 5.0%

Q10. How important are the following items to you to estimate a risk of a certain disease? For the following, please circle the number on each scale that best fits your opinion, respectively.
Factor: Not important at all; Not important so much; Uncertain; Important somewhat; Important very much
1 Severity of disease: 25 (5.0%) 41 (8.2%) 50 (10.0%) 120 (24.0%) 265 (52.8%)
2 Occurrence rate: 6 (1.2%) 48 (9.6%) 82 (16.4%) 158 (31.6%) 206 (41.2%)
3 Efficacy of treatment: 11 (2.2%) 18 (3.6%) 55 (11.0%) 134 (26.8%) 282 (56.4%)
4 Possibility of prevention: 12 (2.4%) 13 (2.6%) 46 (9.2%) 168 (33.6%) 261 (52.2%)

Q11. Do you know the term "prenatal diagnosis" or "amniocentesis"?
1 Yes 207 41.4% 2 No 293 58.6%

Q12. If your answer to question 11 is "yes", please answer the following question. How did you come to know this term? Please select one of the following, and circle the number of your choice.
1 Newspapers 40 19.3%
2 Radio 9 4.4%
3 Television 52 25.1%
4 Magazines 86 41.6%
5 Other sources (please specify) 20 9.7% (e.g. doctors, teachers, relatives)

Please read the following two cases, then answer the questions following each case.

Case 1: Amniocentesis is one of the prenatal diagnostic procedures. It provides a lot of genetic information about a fetus. Using this procedure, one can detect some kind of fetal disorders during the middle stage of pregnancy. These information are useful for a preventive treatment of fetal defects, however, it is impossible to detect them with 100% accuracy. In addition to this, not so many methods of fetal therapy are established yet.
Consider the following case of a young pregnant woman who is greatly concerned over the birth of her second child. Her first child was born with Down's syndrome, and there is a great risk that the next child will be also born with Down's syndrome.

Q13. If you or your spouse (mate) were in the same situation as the young woman in this case, would you want to have amniocentesis performed?
1 Definitely not want it 10 2.0%
2 Probably would not want it 49 9.8%
3 Uncertain 59 11.8%
4 Probably would want it 104 20.8%
5 Definitely want it 278 55.6%

Q14. If your answer to question 13 is "definitely want it" or "probably would want it", please answer the following question.
If you or your spouse (mate) had aminocentesis performed and it showed the fetus to have Down's syndrome, what would you choose to do?
1 Definitely choose abortion 152 30.4%
2 Probably choose abortion 175 35.0%
3 Uncertain 94 18.8%
4 Probably continue pregnancy 35 7.0%
5 Definitely continue pregnancy 44 8.8%

Case 2: In some hereditary diseases, parents or siblings of a patient have an affected gene without showing symptoms of diseases. In other words, they are carriers of a defective gene. When such carriers marry each other, they have a 25% chance to have an affected child or a 50% chance to have a carrier child of this disease.

Q15. How would you do if you were told that a carrier detection test was necessary for you?
1 Definitely not have a test 27 5.4%
2 Probably not have a test 36 7.2%
3 Uncertain 40 8.0%
4 Probably have a test 122 24.4%
5 Definitely have a test 275 55.0%

Q16. How would you feel if you had discovered that you were a carrier of a certain kind of genetic disease?
1 Not shocked at all 26 5.2%
2 Not shocked so much 108 21.6%
3 Uncertain 90 18.0%
4 Shocked somewhat 227 45.4%
5 Shocked very much 49 9.8%

Q17. Would you recommend your siblings that they are also examined?
1 Not recommend definitely 17 3.4%
2 Not recommend probably 43 8.6%
3 Uncertain 54 10.8%
4 Recommend probably 136 27.2%
5 Recommend definitely 250 50.0%

Q18. Are you interested in a prevention and management of hereditary diseases and congenital abnormalities?
1 Not interested at all 12 2.4%
2 Not interested so much 49 9.8%
3 Uncertain 44 8.8%
4 Interested somewhat 193 38.6%
5 Interested strongly 202 40.4%

Q19. Do you know the term "family planning"?
1 Yes 335 67.0%
2 No 165 33.0%

Q21. Do you approve or disapprove of abortions under following various circumstances? Please show your opinion in each case.
CIRCUMSTANCE: Approve; Disapprove; Uncertain
1 If the woman's health is seriously endangered by the pregnancy: 344 68.8% 14 2.8% 142 28.4%
2 If the woman became pregnant as a result of rape: 382 76.4% 31 6.2% 87 17.4%
3 If there is a strong chance of a serious defect in the baby: 357 71.4% 7 1.4% 136 27.2%
4 If the family has a very low income and cannot afford any children: 68 13.6% 229 45.8% 203 40.0%
5 If the woman is not married and does not want to marry the man: 80 16.0% 223 44.6% 197 39.4%
6 If the woman is married and does not want any more children: 67 13.4% 262 52.4% 171 34.2%

Q22. Do you approve or disapprove to use prenatal diagnosis solely to learn the fetus' sex that prospective parents may chose their child's sex through selective abortion?
1 Disapprove definitely 267 53.4%
2 Disapprove somewhat 178 35.0%
3 Uncertain 45 9.0%
4 Approve somewhat 6 1.2%
5 Approve definitely 4 0.8%


Discussion

All the subjects were Buddhist (with different degrees of religiosity) and thus their attitude towards the handicapped is influenced by Buddhist compassion. Viewing the handicapped as the most unfortunate people who inevitably are suffering from the result of the bad karma (deed) in their earlier lives, these Thai Buddhists are more than willing to render their hands to relieve the wretched lot of these unfortunate people and to assist them to have a place in Thai society. At the same time they are doing everything to guard themselves from bearing an abnormal child. Some of the preventive measures they are adopting include avoidance of incest (and marriage with "close blood"), abstention from torturing people or animals, strict observation of the first Buddhist precept of non-killing, and practice of metta (compassion) towards the handicapped. When asked about the right to life of the abnormal fetus the subjects are divided according to their religiousity. Those who are devout Buddhists strongly endorse this right with a view to let the fetus live, despite its suffering, to exhaust its own bad karma potency within this life span. If the fetus is aborted the suffering will be resumed again in some other life, until the whole of the bad karma is expended. Besides it is believed that those who abort the abnormal fetuses will take the recurrent risk. The other group which also believe in Buddhist compassion but with more pragmatic minds, question this right on the ground of the fetus' potential social contributions and its own welfare. Thus divided, the subjects are uncertain to decide whether the discovery of the unfortunate history of the family of the beloved would justify the breaking off of marriage plans. Only 11.2% definitely would decide to break off marriage plans, whereas 19.2% want to go ahead with such plans. Nevertheless both Buddhist groups agree that whatever ground they are treading on, the existing handicapped need proper care by all of us from the family to the government and private sectors.

Concerning hereditary disorders, Thai people have limited knowledge of them. They learn about genetics mostly from books, magazines and doctors. The hereditary diseases they are aware of include diabetes, thalassemia, hemophilia, mental retardation and psychopathy. Having such limited knowledge they do not have much anxiety about genetics. This lack of anxiety is also due to the rare cases of congenital abnormalities in the country and also to the belief in the Buddhist teaching of merit-making. Instead of being anxious, Thai people are inclined to accumulate their merits by every available means (e.g. caring for the handicapped, offering foods to monks and the poor) to ensure good health and luck including the avoidance of the misfortune of bearing an abnormal child. Being aware of the danger of hereditary diseases, Thai Buddhists are now more interested to learn about them as well as to subject themselves to prenatal diagnosis which has been recently introduced into medical practice in the country. They also encourage their friends and relatives to have such diagnosis to detect fetal defects. We do not have sufficient data to anticipate their reaction in the case that these defects are found. But it is not too exaggerated to say that in such case, the devout Buddhists will let the pregnancy continue until the abnormal child is born to suffer its own karma. But, as shown in the data, many pragmatic/utilitarian Buddhists in default of the Buddhist first precept tend to contemplate abortion in some rare cases, e.g. when pregnancy is caused by rape or when it seriously endangers the woman's health. They will not tolerate abortion on the ground of sex discrimination. But whether they will advocate mercy-killing for defective infants or not is still debatable. There is also no agreement whether to let seriously defective infants die untreated is a form of killing. The same with the question whether removal of life support is a morally unjustified act? These are the questions that need to be addressed in a satisfactory manner to allay the uneasiness felt by Thai Buddhists who are uncertain about the answer.


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