A survey of the attitudes of infertile and parous women towards the availability of assisted reproductive technology

Authors


Dr S. Heinonen, Department of Obstetrics and Gynaecology, Kuopio University Hospital, 70211 Kuopio, Finland.

Abstract

Objective  The aim of the study was to assess differences in attitudes towards aspects of assisted reproduction technology between infertile and parous women.

Design  Case-control study.

Setting  University-based tertiary care clinic.

Population/Sample  Three hundred and ninety-two women with fertility problems and 200 parous controls.

Methods  A questionnaire was sent out to 392 the members of Childless Support Association and 200 parous women who had at least three infants and had given birth at Kuopio University Hospital. The questionnaire consisted of 46 questions: demographic information, fertility history, different aspects of assisted reproduction technology and prioritisation issues.

Main outcome measures  Attitudes towards assisted reproduction technology.

Results  The overall response rate was 46%. Infertile women were highly educated (P < 0.01) and had lower parity (mean 0.83 vs 4.76, P < 0.01) than parous women. We recorded four major differences in attitudes between the two groups (OR >2 or <0.5) including provision of infertility treatment to lesbian (46.9%vs 16.7%) and homosexual couples (28.4%vs 11.4%), the opportunity for homosexual couples to use surrogate mothers (30.6%vs 15.2%) and limitations in the number of infertility treatment cycles (28.4%vs 61.4%). For 11 questions, we recorded minor, but statistically significant, differences. In the prioritisation questions, the women set the order according to their own interests, probably because the women were at fertile age and they had or would like to have a child. Maternity services and screening for cancer in women (Papanicolaou's test and mammography) were at the top of the list.

Conclusion  These results reflect a split attitude that was influenced by the wish of infertile women to help childless couples and to be able to recruit suitable sperm/oocyte donors. Parous women were motivated by their concern for children's rights.

INTRODUCTION

The world's first ‘test-tube baby’ was born in the United Kingdom in 1978.1 Since the first successful IVF birth in Finland in 1984, the technology has progressed a great deal over the past 20 years. Infertility treatment has become a routine part of the health care system. Of all babies born in Finland annually, about 2.5–3.0% are born after IVF or ICSI treatments and the number of fresh and frozen embryo transfers resulting from IVF/ICSI per year total 7000. In 2002, IVF treatment was started in 5.8 per thousand women of fertile age.2 The need for assisted reproduction technology has increased and will probably continue to increase in the future. About 50% of the assisted reproduction services are offered in the public health sector in Finland. The rest of the couples are treated in private clinics, where approximately half of the costs incurred by the treatment is reimbursed to couples and thus partly covered by public funding.

There is no law regulating assisted reproduction in Finland, although the law has been in preparation since the year 1982. The latest draft of the proposed law did not pass through Parliament in spring 2003. During this process, issues which provoked much discussion and criticism in the media include access to fertility treatment for lesbian and single women, and issues around identifying sperm donors. All other Nordic countries have a law of assisted reproduction. For example, in Sweden, the child has the right to get to know the identity of the sperm donor. With this background in mind, we designed this survey.

Italy has recently passed a law on assisted reproduction in February 2004. The new rules do not allow freezing or destruction of human embryos or the use of donated sperm and eggs. The maximum number of oocytes that can be fertilised per cycle is limited to three. In the United Kingdom, the Department of Health announced that gamete donors are going to lose their right to anonymity in 2005. Fertility specialists are worried about the shortages in available donors in the future. Under the new plans, donors' offspring would have the same rights as adopted children to trace a biological parent. Donors will, however, have no legal or financial responsibility for the child.3

Our aim was to study attitudes towards different aspects of assisted reproduction technology in two groups likely to have different interests on the matter. The first group comprised women who were potential users of this service, and the second group comprised parous women who had at least three live born births. This kind of study has not been carried out in Finland previously.

METHODS

In October 2003, questionnaires were posted to all 392 members of the Childless Support Association and to 200 parous women who had given birth at Kuopio University Hospital and who had at least three children. Because the responses were anonymous, we could not send a second questionnaire to those who did not respond to the first questionnaire. This may have somewhat decreased the response rate, but gave further assurance of the anonymity of the responders. For the sake of clarity, we use here the term ‘infertile women’ for members of the Childless Support Association. Most of the members of the Childless Support Association are couples who suffer from infertility. Some of them have had a child or children with the help of infertility treatments.

The questionnaire comprised several questions, mostly targeting controversies within the proposed law. The first section ascertained demographic information and infertility history. In addition to age, parity, marital status and education, women were asked about their history of infertility and satisfaction with infertility treatment. The second, third and fourth sections of the survey consisted of statements about different aspects of assisted reproduction technology. The second section covered statements about whose infertility should be treated (i.e. only for heterosexual couples, also for lesbian couples, also for homosexual couples or also for single women). The third section consisted of questions of a child's right to know the identity of his/her biological parents and the gamete donor's right to get information about the child. The fourth section consisted of other aspects of assisted reproduction technology. The response categories in the items were a four-point scale from 1 =‘totally agree’ to 4 =‘totally disagree’, while a zero indicated ‘I cannot say’. Responses including ‘totally agree’ and ‘partly agree’ were considered affirmative statements while responses of ‘partly disagree’ and ‘totally disagree’ were seen as a rejection of the preceding statement in the questionnaire.

The fifth section covered selected prioritisation questions. There were two sets of questions. In both sets the questions dealt with the same 12 health care sections, that is, Papanicolaou's test, follow up of the pregnancy in maternity care unit, doctor's appointment due to contraception, fetal ultrasonography, screening for prostate cancer, antenatal maternal serum screening, menopausal hormone replacement therapy, mammography, infertility treatment, sterilisation, abortion and contraceptives. In the first set of questions, responders had to categorise different services with a four-point scale ranging from 1 = totally free for the patient (communal funding) to 4 = totally at the patient's own expense. Zero indicated that the respondent could not say. In the second set of questions, responders had to arrange these services in numerical order according to their public health importance, 1 indicating the most important to provide with communal funding and 12 the least important to provide with communal funding.

The results were analysed by SPSS (Statistical Package for Social Sciences, Chicago, Illinois) version 11.5. The unpaired t test for continuous variables and χ2 test for percentages were used to assess differences between groups. We used logistic regression to calculate the odds ratios and 95% confidence intervals (95% CI) for the differences in attitudes between groups. Differences in attitudes were considered major when the odds ratio between the groups was over 2 or under 0.5, and the 95% CI remained statistically significant.

The Research Ethics Committee of the Northern Savo Hospital District and the executive committee of the Childless Support Association approved the study.

RESULTS

The response rate in the group of infertile women was 48% (189/392). Parous women responded with a similar rate of 42% (84/200); there was no statistical significance between the groups (P= 0.151). Because responses were anonymous we do not have any information of the non-respondents. The mean age (±SD) of parous women was 35.0 (±5.0) years and it was 34.0 (±6.1) years in women with fertility problems. The demographic data are presented in Table 1. Parity and educational level differed significantly between the groups studied, infertile women being more often highly educated and having lower parity.

Table 1.  Demographic data of the respondents. Values are presented as n (%) or mean [SD] (range).
 Infertile womenParous womenP value between groups
  1. Statistics: SPSS software version 11.5: unpaired t test for continuous variables, and χ2 test for percentages.

Response rate189 (48)84 (42)non-significant
Mean age34.0 [6.12] (24–54)35.0 [4.95] (24–45)non-significant
 
Marital status  non-significant
Married163 (86)68 (82) 
Cohabiting23 (12)11 (13) 
Divorced1 (1)2 (2) 
Widowed0 (0)2 (2) 
Unmarried2 (1)0 (0) 
 
Parity0.83 [0.98]4.76 [1.49]<0.01
No child92 (45)  
1 child55 (29)  
2 or more children42 (22)84 (100) 
 
Education
University degree118 (63)34 (41)<0.01
 Higher academic degree61 (32)22 (26) 
 Lower academic degree57 (30)12 (14) 
No university degree66 (35)46 (55)<0.01
 Intermediate grade55 (29)29 (34) 
 Student6 (3)11 (13) 
 Comprehensive school5 (3)6 (7) 
 Missing5 (3)4 (5) 

Over 80% of infertile women and parous women would set an upper age limit to the infertility treatment for women, and 66% of infertile women and 73% of parous women would set an upper age limit for men also. Our responders did not agree with the statement that single women could only have infertility treatment if the sperm donor gives his consent that he can be confirmed as the juridical father of the child who has been born (Question 5,Table 2).

Table 2.  Attitudes towards different aspects of assisted reproduction technology. Values are presented as n (%), unless otherwise indicated. Logistic regression was used to calculate the odds ratio and 95% CI.
QuestionsInfertile women agreeParous women agreeOR (infertile /parous women)95% CI
  • *

    Minor but statistically significant differences in attitudes; odds ratios are in the range of 0.5 to 2.0.

  • **

    Major and statistically significant differences in attitudes; odds ratio between the groups are over 2 or under 0.5 and the 95% CI remains statistically significant.

Who has the right to get infertility treatment?
1. Only heterosexual couples should have an opportunity to get infertility treatment.99 (56)58 (74)0.750.63–0.91*
2. Female couples should also have an opportunity to get infertility treatment.79 (47)13 (17)2.821.67–4.75**
3. There should also be an opportunity to get infertility treatment (through a surrogate mother) for male couples.48 (28)9 (11)2.491.28–4.84**
4. Infertility treatment with an anonymous sperm donor should be offered to single women without it being possible to confirm the sperm donor as the legal father ofthe child who is born.116 (66)31 (39)1.711.27–2.30*
5. Single women can be given the infertility treatment only if the sperm donor gives his consent to be confirmed as the legal father of the child who is born.55 (33)22 (28)1.150.76–1.75
6. An upper age limit should be set for the infertility treatment for the women.155 (85)65 (85)1.010.90–1.13
7. An upper age limit should be set to the infertility treatment for the men.117 (66)55 (73)0.900.76–1.08
 
Who has the right to get information?
8. If the donor's sperm has been used for infertility treatment, the child should have the right to know the identity of the sperm donor.65 (39)42 (57)0.690.52–0.91*
9. If the donor eggs have been used to the infertility treatment, the child should have the right to know the identity of the egg donor.64 (38)41 (55)0.690.52–0.92*
10. If a surrogate mother has been used, the child should have a right to know her identity.91 (55)45 (63)0.880.70–1.11
11. An adopted child has the right to know the identity of his or her biological parents.162 (89)73 (88)1.020.93–1.12
12. A child who has been born through natural fertilization also has a right to know the identity of his or her biological father (when the biological father is not the mother's husband).131 (80)66 (82)0.990.87–1.12
13. The deliverer of gametes should get information about the child who has been born as the result of the treatment.43 (25)27 (37)0.680.45–1.01
14. It is the duty of parents to tell a child about the use of assisted reproduction technology.124 (66)42 (58)1.140.91–1.42
 
Other aspects
15. The use of the surrogate mother should be allowed to the heterosexual couples.154 (87)46 (64)1.361.14–1.64*
16. The use of the surrogate mother should be allowed also to lesbian couples.52 (30)14 (18)1.701.00–2.90*
17. The use of the surrogate mother should be allowed also to homosexual couples.52 (31)12 (15)2.011.14–3.57**
18. Excess embryos after infertility treatment can be used to treat other couples(embryo donation), with the permission of the donor couple.146 (80)44 (60)1.331.09–1.62*
19. Excess embryos after infertility treatment could be used to stem cell studies.128 (75)33 (45)1.691.29–2.21*
20. Genetic screening of embryos to exclude illnesses or genetic defects is morally justified.125 (72)36 (47)1.541.19–1.99*
21. The number of the infertility treatment cycles must be limited.49 (28)43 (61)0.460.34–0.63**
22. The availability of infertility treatments is good.37 (69)126 (82)0.840.71–0.10*
23. Unintentional infertility causes the increased use of other health services (for example depression).143 (80)59 (86)0.940.83–1.06
24. Unintentional infertility causes problems in relationship.148 (78)63 (85)0.920.82–1.04
25. Unintentional infertility is an illness.113 (65)24 (34)1.911.35–2.69*
26. A law on assisted reproduction should be obtained as soon as possible.146 (89)51 (82)1.080.95–1.23

Over half of both two groups agreed that if a surrogate mother has been used, the child has a right to know her identity. Almost 90% of infertile and parous women agreed with the statement that an adopted child has a right to know the identity of his or her biological parents. Over 80% of infertile and parous women agreed with the statement that if the child has been born through natural fertilisation and his or her biological father is not the mother's husband; the child has the right to know his identity. Both groups disagreed with the statement that the gamete donor should get information about the child who has been born as the result of the treatment. Two-thirds of infertile women and 58% of parous women agreed in question that it is the duty of the parents to tell a child about the use of assisted reproduction technology (Table 2).

Eighty percent of infertile women and 86% of parous women agreed with the statement that the unintentional infertility causes the increased use of other health services (due to for example depression). In statement that the unintentional infertility causes problems in relationship, 78% of infertile women and 85% of parous women agreed. Both study groups would like Finland to have a law on assisted reproduction as soon as possible (Table 2).

Table 2 shows questions from sections two, three and four, the percentages of approvals, the odds ratios and 95% CI. In 15 out of 26 (58%) questions, the results were significantly different between the groups studied. A total of four such major differences were recorded and they dealt with the possibility to provide infertility treatment also for lesbian and homosexual couples, and to give an opportunity to homosexual couples to use surrogate mothers. Accordingly, the statement that the number of the infertility treatment cycles must be limited was strongly opposed by the group of infertile women (Table 2).

In 11 questions, the differences were statistically significant, but the odds ratios were in the range of 0.5 to 2.0. Two-thirds of infertile women agreed to offer infertility treatment also for single women and they should have access to anonymous donor sperm from a sperm bank, whereas only 39% of parous women agreed with this. With regard to statements that a child has the right to know the donors' identity, when donors' gametes were used, more than 50% of the infertile women disagreed. Infertile women were more willing to accept the use of a surrogate mother for heterosexual and lesbian couples. A total of 80% of the infertile women, but only 60% of parous women, approved embryo donation. In the same line of thought, infertile women more often approved the statement that the excess embryos may be used for stem cell studies. Most (72%) infertile women also approved genetic screening of the embryos, and they considered it morally justified. The parous women (82%) generally thought that the availability of infertility treatments was good. Infertility was regarded an illness by 65% of the infertile women, but only 34% of the parous women (Table 2).

The order of the first three public health services was the same in the two study groups for both sets of prioritisation questions. The order with regard to funding was somewhat different from the order related to prioritisation. In the first set of questions (the question of funding), the order for one to seven was the same in both groups, with infertility treatment ranking seventh in both groups. For the second set of questions (the questions on prioritisation), there were only a few differences between the two groups, with infertility treatment ranking fifth on the list by infertile women and sixth on the list by parous women.

Overall, both groups set follow up of pregnancy in the maternity care unit in first place on the lists, followed by cancer screenings for women (Papanicolaou's test and mammography). Fetal ultrasonography, screenings for prostate cancer and infertility treatment were next on the list. At the end of the list were menopausal hormone replacement therapy, contraceptives, abortion and sterilisation, as expected. Because the women in our study groups were at a fertile age and they had or would like to have a child, they set the order according to their own interests. Probably because the respondents were women the screening for prostate cancer was on the list behind cancer screenings for women (Table 3).

Table 3.  Prioritization questions. For questions on prioritization, the respondents had to arrange the 12 health care services in numerical order according to their public health importance, 1 indicating the most important to provide with communal funding and 12 the least important to provide with communal funding. For the question on the responsibility of the public health sector to fund the services, the response categories were 1 = totally free for the patient (complete responsibility of the public health sector to fund the service), 2 = low cost for the patient, 3 = high cost for the patient, 4 = funding completely by the patient. Data are the mean ranking [SD].
Arranged in priority orderResponsibility of the public health sector to fund
  1. Statistics: SPSS software version 11.5.

Infertile women (n = 189)
1. Follow up of pregnancy in a maternity care unit1. Follow up of pregnancy in a maternity care unit, 1.13 [0.38]
2. Papanicolaou's test2. Papanicolaou's test, 1.18 [0.39]
3. Mammography3. Mammography, 1.20 [0.42]
4. Fetal ultrasonography4. Screening for prostate cancer, 1.29 [0.52]
5. Infertility treatment5. Fetal ultrasonography, 1.37 [0.54]
6. Screening for prostate cancer6. Antenatal maternal serum screening, 1.76 [0.81]
7. Antenatal maternal serum screening7. Infertility treatment, 1.79 [0.50]
8. Doctor's appointment due to contraception8. Doctor's appointment due to contraception, 2.26 [0.86]
9. Contraceptives9. Menopausal hormone replacement therapy, 2.34 [0.73]
10. Menopausal hormone replacement therapy10. Abortion, 2.52 [0.97]
11. Abortion11. Sterilization, 2.58 [0.89]
12. Sterilisation12. Contraceptives, 2.90 [0.93]
 
Parous women (n = 84)
1. Follow up of pregnancy in a maternity care unit1. Follow up of pregnancy in a maternity care unit, 1.10 [0.30]
2. Papanicolaou's test2. Papanicolaou's test, 1.19 [0.45]
3. Mammography3. Mammography, 1.20 [0.46]
4. Fetal ultrasonography4. Screening for prostate cancer, 1.24 [0.48]
5. Screening for prostate cancer5. Fetal ultrasonography, 1.26 [0.49]
6. Infertility treatment6. Antenatal maternal serum screening, 1.79 [1.02]
7. Antenatal maternal serum screening7. Infertility treatment, 1.94 [0.77]
8. Doctor's appointment due to contraception8. Menopausal hormone replacement therapy, 2.11 [0.77]
9. Menopausal hormone replacement therapy9. Doctor's appointment due to contraception, 2.23 [1.06]
10. Contraceptives10. Sterilisation, 2.37 [1.16]
11. Abortion11. Abortion, 2.49 [1.10]
12. Sterilisation12. Contraceptives, 2.90 [1.12]

DISCUSSION

The response to our survey was good, and similar in both groups, even though we sent only one questionnaire to the participants and the questions were sensitive in nature.4 The main finding of this study was that women of reproductive age had similar attitudes towards assisted reproduction technology in 42% of the questions asked, independently of their own fertility history. Major differences were observed in 15% of the questions asked. These differences clustered around the statements on the opportunity for lesbian and homosexual couples to get infertility treatment and on setting a limit to the number of the infertility treatment cycles. Minor differences were detected in 42% of the questions. These differences dealt with a wider spectrum of questions than those where major differences in opinion emerged.

Several interesting observations can be drawn from this study. Firstly, infertile women were more liberal than parous women; a greater number of them would have given an opportunity for lesbian and homosexual couples and single women to get infertility treatment. Secondly, when donor gametes are used, the question of a child's right to know his or her biological parent was viewed differently by the two groups. Infertile women were clearly more reluctant to breach donor anonymity than parous women. However, both groups agreed that it is an adopted child's right to know his or her biological parents. Consequently, it appeared that infertile women thought that when a child has been born in the family, the biological origin was not important. Where the child's biological parents used a surrogate mother, most respondents in both groups considered that it is the child's right to know the identity of the women who have given birth, even though she was not the biological parent. Both groups also agreed that a child should know the identity of his or her biological father when the father is not the mother's husband, and the child was conceived through natural fertilisation. Basically, this case could be considered similar to those in which donor's sperm has been used, but the mother's husband is unaware of the cryptogamy. Thirdly, both groups would have given at least heterosexual couples the possibility to use a surrogate mother. Fourthly, infertility treatment was quite high on the list of health care priorities in both groups. On the list of infertile women, it was even higher than screening for prostate cancer. Interestingly, when the order of prioritisation is sought from decision-makers, infertility treatment is usually at the bottom of the list.5

The diverging attitudes can be explained by three differences between groups: education, parity and personal experience of fertility problems. Prolonged time spent in higher education may have contributed to fertility problems in some. Couples may have postponed having a family, and women may already have passed the most fertile time in their life. Education may have influenced attitudes as well, giving people a wider perspective to view the issues. On the other hand, respondents were self-selecting and therefore, responses from the parous women having lower educational level may not be fully indicative of a wider population group. However, personal experience of infertility may have been the most important factor affecting attitudes. It appeared that women with fertility problems were more empathic, and they were willing to offer infertility treatment to a wider group of potential parents. These attitudes may have influenced by the fear of neglected infertility treatment and shortages in available sperm or oocyte donors. On the other hand, parity may have influenced attitudes concerning a child's right to know his or her biological parents. Parous women may view this question primarily from a child's perspective, whereas infertile women may view it from their own perspective and that of other childless couples.

The results of this study have an important message for the people who are preparing the next bill in Finland. All other Nordic countries have a law on assisted reproduction and the present results show that almost 90% of infertile women, and over 80% of parous women would like Finland to have a law on assisted reproduction as soon as possible. Issues that became controversial in the draft of the proposed law were exactly the same as those for which major differences in attitudes were found in this study. In the latest draft of proposed law, single women's right to conceive the child with donor sperm if the sperm donor agrees to become the legal father of the child provoked much discussion. In other Nordic countries, infertility treatments are not available for single women or lesbian couples and the use of donated embryos or the use of surrogate mother is prohibited. At present, single women and lesbian couples can get infertility treatment in some private clinics in Finland. It is also possible to use donated embryos in infertility treatment and to use a surrogate mother. Most respondents in both groups approved such a policy in this study also.

A total of 52% of the Swedish parents conceiving the child with the donor insemination had told or intended to tell their child about the use of donor's sperm.6 In Swedish legislation, the child born after donor insemination has the right to receive identifying information about the sperm donor. In our study, only 39% of infertile women would be willing to share this information with the child. The study by Vanfraussen et al.7 showed that 54% of children who were born after donor insemination to lesbian parents and who knew that donor's sperm had been used and over 70% of the mothers preferred donor anonymity. This result is in accordance with our findings.

Table 4 presents the results of seven recent surveys on attitudes towards assisted reproduction technology, showing that Finnish women in their fertile years are more willing to approve the use of a surrogate mother, and that infertile women also approve infertility treatment for wider spectrum of the population than respondents in the Australian study. The approval rate regarding embryo donation for treatment of other couples or for research were relatively high in our study, probably reflecting the facts that our responders did not have stored frozen embryos. Furthermore, medical research is generally thought to meet strict and high ethical standards in Finland.

Table 4.  Comparing attitudes towards different aspects of assisted reproduction technology, between present study and seven other studies. Values are presented as n (%).
Question and studyApproval rate
  • a

    Interview study, randomly selected study population.

  • b

    Responders had stored frozen embryos.

  • c

    Retrospective review.

  • d

    Cohort study.

  • e

    The donation of embryos without conditions attached.

  • f

    Couples could limit the donation of their embryos to persons/couples according to their preferences.

  • g

    Couples underwent infertility treatment in Sweden, and they preferred donating their excess embryos for stem cell research rather than letting them be discarded.

Infertility treatment for married couples only?
Kovacs et al.,8 Australiaa (n= 1000)860 (86)
Present study (n= 273)99 (56) (infertile women)
58 (74) (parous women)
 
Infertility treatment also for single women?
Kovacs et al.,8 Australiaa (n= 1000)380 (38)
Present study (n= 273)116 (66) (infertile women)
 31 (39) (parous women)
 
Infertility treatment also for lesbian women?
Kovacs et al.,8 Australiaa (n= 1000)310 (31)
Present study (n= 273)79 (47) (infertile women)
13 (17) (parous women)
 
The use of a surrogate mother (‘commercial’ surrogacy)
Kovacs et al.,8 Australiaa (n= 1000)300 (30)
Present study (n= 273)154 (87) (infertile women)
46 (64) (parous women)
 
Treated couple willing to donate excess embryos for treatment to another couple.
Hounshell and Chetkowski,9 USAb,c (n= 83)4 (4)
Van Voorhis et al.,10 USAb,d (n= 365)40 (11)
Kovacs et al.,8 Australiaa (n= 1000)650 (65)
Newton et al.11 (n= 67)30 (45) (unconditional donatione)
33 (50) (conditional donationf)
Present study (n= 273)146 (80) (infertile women)
44 (60) (parous women)
 
Treated couple willing to donate excess embryos for research.
McMahon et al.,12 Australiab (n= 275)27 (10) (probable)
96 (35) (possible)
Van Voorhis et al.,10 USAb,d (n= 365)36 (10)
Bjuresten and Hovatta,13 Swedeng (n= 331)305 (92)
Present study (n= 273)128 (75) (infertile women)
33 (45) (parous women)

In summary, the results reflect a split attitude that was determined in infertile women by the wish for helping childless couples and being able to recruit suitable sperm or oocyte donors and in parous women by the concern for children's rights.

Acknowledgements

The authors would like to thank all the respondents to the questionnaire and the Childless Support Association for their cooperation.

Accepted 16 August 2004

Ancillary