Department of Public Health, National Cheng Kung University, Taiwan;
Department of Social Studies Education, National Tainan Teachers College, Taiwan;
Department of Pediatrics, National Cheng Kung University, Taiwan.
1 2 3
If you could choose the gender of the e mbryo injected during Reproduct ive T echnologie s, which
o ne do you prefer ?
With Pressure Without Pressure
%
Ma le F ema le No preference
If the injec ting male embryo would be ste rile as its fa the r in the fut ure, do you still w ant it to be inje cte d?
Wit h Pre ssure Without Pre ssure
%
Participants and Methods
Results
Discussion
Acknowledgement
Newly married couples are the group of people who start a brand new family, and would face the issue of getting pregnant. The purposes of the study were to understand the pressure of pregnancy of newly married couples in the 21 centery, and their attitudes toward using reproductive technologies. Futhur more, this study compared: (1) the difference in the pressure of pregnany between husbands and wives, and (2) the intention to use reproductive technologies between people with and without pressur e of pregnancy.
Newly married couples (marriage registration under 6 months, from Jul1 through Dec 31, 2002.) living in both East and An-Nan District in the city of Tainan were recruited as study subjects. A structured questionnaire consisting of part A and B, answered by h u s b a n d s a n d w i v e s r e s p e c t i v e l y , w a s d e v e l o p e d . T h e q u e s t i o n n a i r e i n c l u d e d t h r e e s e c t i o n s : s o c i o d e m o g r a p h i c information, pressure of pregnancy, and attitudes toward reproductive technologies. Data was collected by face-to-face interviews.
After three follow-ups, 569 subjects were interviewed including 294 male (51.7%) and 275 female (48.3%).
The results showed that 23.4% of the newly married couples have the pressure of pregnancy a baby boy. Wives perceived more pressure of having a boy than their husbands (28.4% vs. 18.7%, p=0.02) (Fig.1). The pressure was mainly from husbands' parents (p<0.001) (Fig.2).
Perceived Pressure of Pregnancy
Source of Pressure of Pregnancy
People with pressure of pregnancy think that the mari tal relationship between their spouse and themselves are definitely going to change, if they had the problem of sterility (p<0.001).
(Table.1)
Sterility and the status of matrimony in people with pressure of pregnancy
People who have the pressure of pregnancy tended to make an attempt at reproductive technologies (p<0.001) (Table.2). They tended to take prenatal gender diagnosis, especially when they have had two daughters already (43.7% vs. 20.8%, p<0.0001). They also tended to cho ose injecting male embryos if they had a chance to use reproductive technologies (65.2% vs. 23.9%, p<0.001)(Fig.3).
Still 23.8% of them insist on injecting male embryos even if the embryos would be sterile as its father in the future (p=0.006)(Fig.4).
It was noticed that nearly no people who have the pressure of pregnancy have considered injecting a female embryo as their top priority.
Attempts when one of the spouses is sterile.
Gender preference for the injected embryo. (If it could be chosen.)
Choice of injecting a male embryo which would be sterile in the future.
The pressure of pregnancy between husbands and wives of newly married couples is different, yet they mainly come from husbands' parents. Such pressure of pregnancy not only influences the status of matrimony between husbands and wives, but also the useage of reproductive technologies. Although it is the 21 century, women still bear heavier reproductive pressure than men do in Taiwan. People who have the pressure of having boys would take any chance to use reproductive technologies to have their own children, especially boys.
T h i s r e s e a r c h w a s s u p p o r t e d b y N a t i o n a l Science Council of Taiwan : NSC92-3112-H-006-003.
Do you think the relationship between you and your spouse is going to change?
13.84 0.001*
Yes 29(21.8) 42(9.7)
N o 76(57.1) 290(66.5)
I don't know 28(21.1) 104(23.8)
32.34 <0.0001*
Yes 46(34.6) 57(13.1)
N o 51(38.3) 241(55.4)
I don't know 36(27.1) 137(31.5)
*p<0.05
2
Variable With pressureWithout pressure X p
N(%) N(%)
What would you do if One of you and your spouse is sterile?
Give up trying to have a baby 7(5.3) 93(21.3) 18.16 0.0001 Try Reproductive technologies 67(50.4) 134(30.7) 17.21 <0.0001*
See what my spouse says 48(36.1) 164(37.6) 0.10 0.75
Give up trying to have a baby 13(9.8) 95(21.8) 9.57 0.002*
Try Reproductive technologies 63(47.4) 113(25.9) 21.95 <0.0001*
See what my spouse says 47(35.3) 182(41.7) 1.74 0.19
*p<0.05
2
1.The difference in the pressure of pregnany between husbands and wives
Fig.1
Fig.2
2.Sterility disharmonize the status of matrimony in people with pressure of pregnancy
Table.1
3. Intention to use reproductive technologies between people with and without pressure of pregnancy.
Table.2
Fig.3
Fig.4
If my spouse is sterile
If I am sterile
If wife is the sterile one
If husband is the sterile one
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Demographic factors and the concepts of autonomy, privacy, and doctor-patient relationships in
genetic testing of
newly married couples in Tainan, Taiwan
S.C. Hu,Ph.D. 1 *, R.J. Chuang, MS. 1, I.C. Huang Ph.D. 2, S.J. Lin, MD.3
1Department of Public Health, National Cheng Kung University, Taiwan 2Department of Social Studies Education, National Tainan Teachers College, Taiwan
3Department of Pediatrics, National Cheng Kung University, Taiwan
Introduction
• The development of human genetics – raises a wide range of ethical, legal, and social
impacts for our life.
• It is important to know
– issues related to genetic testing and to what extent the ethical, legal, and social impacts are.
Purpose
• To understand:
– the relations between socio -demographic factors and the concepts of autonomy, privacy, and doctor-patient relationships in genetic testing of newly married couples in Taiwan.
• Newly married couples:
– represent a brand new family.
– will face the issue of bearing child and start to use medical services.
– some may encounter genetic problems.
– are suitable for genetic education.
Method
1. Participants:
– Newly married couples (marriage registration dates under 6 months) living in East and An-Nan District in Tainan, Taiwan.
– After three follow-ups, 569 subjects were recruited in the study, including 294 males (51.7%) and 275 females (48.3%)
2. Questionnaire:
– Consisting of part A and B answered by husbands and wives respectively
– Developed in accordance with case scenario format
– Considering relevant studies and native culture – Data was collected by face-to-face interviews
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《附件三》新婚夫婦在遺傳檢測過程中之自主權、隱私權及醫病關係探討
6
3. Data analysis:
• Univariate: Percentage (%)
• Bivariate: Chi-square tests
– Socio-demographic factors: gender, age, and level of education
– Three focuses: autonomy, privacy, and patient-doctor relationships
Results
• The scenario:
– Mr. and Mrs. Wu had a 5-year-old son who was mentally retarded. One day, they received a note that the school will have a health examination for children and need parents’ consent.
• Questions 1-2:
– If you were Mr./Mrs. Wu, do you think the school should obtain informed consent from parent before testing a child?
– What kinds of test for your child need your informed consent?
Autonomy
– Most participants (67.8%) reported that informed consent should be obtained from the parents before any kind of test for their children.
– Especially for tests related to mental disorders (75.8%), infectious diseases (73.8%), and genetic disorders (78.4%).
Autonomy
• Question 3:
– Can the blood sample collected from your child for a test be saved and used again for future research?
Table 1: Can the blood sample collected from your child for a test be saved and used again for future research?
(by gender)
X2=9.72
Gender
5.8 10.5
Yes, and don't need my consent
75.6 78.6
Yes, but need my consent
0.008*
7
Table 2: Can the blood sample collected from your child for a test be saved and used again for future research?
(by age group)
X2=9.28
Age
11.6 6.2
Yes, and don't need my consent
78.1 76.6
Yes, but need my consent
0.01*
Table 3: Can the blood sample collected from your child for a test be saved and used again for future research?
X2=24.91
College and above
4.6 81.4 14.0 Level of education
7.0 Yes, but need my consent
<0.001* school Junior
high school Variables
Genetic Privacy
• Scenario:
– Through genetic testing, Mrs. Wu was found to be the one who carries an abnormal gene for her son ’s mental retardation.
• Question :
– If you were Mr./Mrs. Wu, whom do you think the test report should be disclosed to?
Table 4: Whom do you think the test report should be disclosed to?
X2=12.98
60.6 61.0
To both parents
2.2 5.4
To anyone in the family
Gender
To either of the parents
0.01*
13.1 6.4
To the one who carries the gene
p Wives Husbands Variables
Table 5: Whom do you think the test report should be disclosed to?
X2=18.44 To either of the parents
63.6 58.5 58.1 To both parents
1.5 4.5 8.6 To anyone in the family
1.5 0.5 Others 3.8
College and above Level of education
p Senior
high school Junior high
school Variables
Genetic Privacy
• Scenario:
– Mrs. Wu had a brother who was mentally retarded too. Because of unbearable family pressure, Mrs. Wu does not want her husband to know the test results of their son.
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• Questions:
– Do you think the husband has the right to know the truth?
– Do you think the wife has the right to keep the secret with her?
Genetic Privacy
thought the wife has the right to keep the secret with her.
No significant variable was found
•28.5%
thought the husband has the right to know the truth.
Significant variables: age <30 and college graduate and above
•90.7%
Genetic Privacy
• Scenario:
– If you were Mr. Wu and knew the truth afterward (or if your husband knew the truth afterward).
• Question:
– Whom else would you like to tell the genetic finding of your son?
Table 6: Whom else would you like to tell the genetic finding of your child
<0.001*
29.8 14.6
My own brothers and sisters
12.0 0.68 10.9
My spouse's brothers and sisters
2.9 0.89 1.7
Other family members
0.004*
38.2 0.88 38.8
My parents-in-law
0.008*
66.9 56.1
My own parents
p Wives Husbands Variables
Doctor-patient relationships
• Scenario:
– Mrs. Wu worried her husband or other family members would know the secret. She insist on tearing up the medical record.
• Question:
– Do you think Mrs. Wu has the right to ask the followings :
Table 7: Do you think the wife has the right to do the followings:
X2=12.27
13.6 18.6
Both of the above
38.1 medical record
0.02*
43.2 29.8
To ask a doctor not to tell the family members
Wives p Husbands Variables
9
Table 8: Do you think the wife has the right to ask the followings:
X2=30.71 family members
1.1 0.0 1.9 To ask a doctor to tear up the medical record
13.6 16.6 21.9 Both of the above
36.7
College and higher Level of education
p Senior
high school Junior high
school Variables
Conclusions
• Autonomy
– Female, younger age group (≦30), and higher level of education (high school graduated and more) placed more importance in the autonomy of blood samples taken from their child and the studies they attended.
• Genetic privacy
– Female, and higher educated people took their privacy more seriously regarding the results of genetic testing.
• The results should be disclosed only to the carrier – Wives tended to share the genetic results with
her parents, brothers and sisters; whereas husband tended to tell nobody.
• Doctor-patient relationships
– Female, higher level of education (high school graduated and above) knew more rights regarding the results of genetic testing
• Doctors should keep the secret for them.
Discussions
• Socio-demographic factors play a significant role on autonomy, privacy, and doctor-patient relationships in genetic testing.
• Understand more thoughts of genetic testing in newly married couple would help design a fine genetic education and counseling program.
• The program should focus on not only clarifying their thinking process but also be family
oriented.
Thank you!
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