Knowledge and Attitudes of Infertile Couples towards Embryo Donation Program: A Preliminary Report from Iran

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1 فصلنامهي اخلاق در علوم و فن اوري سال دوم شمارههاي 1 و 2 بهار و تابستان 86 Knowledge and Attitudes of Infertile Couples towards Embryo Donation Program: A Preliminary Report from Iran Ghasemi N, Khalili MA * and Tayyebi N Research and Clinical Center for Infertility, Shahid Sadoughi University of Medical Sciences, Yazd, Iran Objective: There are still worldwide controversial attitudes regarding embryo donation (ED) program. The aim of this descriptive study was to evaluate the infertile couples opinions regarding ED program for infertility treatment in Iran. Methods: A total of 120 infertile patients (women, n=61; men, n=5) residing in Iran were asked to fill out the questionnaires. Part I of the questionnaire form contained general demographic information. Part II contained 17 questions to reveal their knowledge and attitudes about ED program in Iran. Results: The vast majority of the subjects had formal education. One-third had complete objection toward ED. 21% and 14% of the women and men thought that ED is not permitted by their religion, respectively. Nearly half of participants believed in informing the general public about ED in mass media. In addition, majority of the participants were in favor of ED over adopting a child. Psychological counseling was strongly recommended by vast majority of respondents for both donor and the recipient of the embryos. Conclusion: The vast majority of infertile patients had positive attitudes toward ED as treatment for selected infertile cases. However, their knowledge on their religious attitudes was limited. Therefore, the mass media and healthcare professional should develop programs for informing the public regarding the ED. Key words: Embryo Donation; Infertile patient, Attitudes; Iran. Introduction Despite a high population growth rate in Iran, infertility remains as a major reproductive heath problem. Although, a large number of infertile couples have already benefited from assisted reproductive technology (ART), some have remained childless. One possible option that they may consider is embryo donation (ED) procedure. ED is the process where embryos created from the oocytes of a woman and the sperms of her husband is gestated in the uterus of another woman (1-3). Like traditional adoption, the couple who raises the child has no genetic connections to the child. A significant difference between ED and adoption is that, although in neither case does the social mother have a genetic tie with the child, in ED she gestates the child, that is absent in adoption (4). Also, unlike adoption, the couple does not have to go through a legal process in order to be declared the child s legal parents (4,5). In ED, the couple biologically adopts during the embryonic stage, at the point of embryo transfer into the uterine cavity (1-5). ED is an option for infertile couple who wants to experience pregnancy, but are lacking sperms or oocytes to contribute to that process. Also, couples with premature ovarian failure or poor responder to ovarian stimulation, and the man suffering from severe sperm defects may benefit from ED program (6). In addition, some azoospermic men may want to enroll for ED program, since sperm donation is not 8 Corresponding Author: Tel: , khalili5@hotmail.com نويسندهي مسي ول:

2 دكتر قاسمي و همكاران: Couples.. Knowledge and Attitudes of Infertile legally in practice in Iran. ED may also be indicated for couples who are carrieirs of a hereditary disease, which may cause morbidity in the child (5,6). Although, couples seeking ED will miss out on having a genetic connection to their offspring, they will have the opportunity to be pregnant and give birth (1,2). In general, couples, in particular women of any age group, have a strong desire to have children of their own (5). However, sometimes the couple s infertility status may reach to the point that they have to get help from third party to overcome their infertility problem (3-5). Although, the infertile couples who are the right candidates for ED are usually in favor of overcoming their infertility with the aid of ED program; the knowledge as well as attitudes of infertiles in different societies towards ED is still a controversial issue (1-5). This could be even more complicated in Islamic societies where some may even believe that third party reproduction is not permissible under Islamic rules or forbidden by the legislation law (7,8). However, ED as well as oocyte donation have been legally offered to married infertile couples in Iran for the last several years. To our knowledge, there have been only one brief report on the attitudes of Muslims toward ED program (). Therefore, the aim of this descriptive survey was to investigate the attitudes of Muslim infertile couples living in Iran towards different aspects of ED. This will offer them the opportunity to voice their opinion on ED offered for selected infertile couples who are keen to raise children. Materials and Methods This descriptive study was undertaken at research and clinical center affiliated with Shahid Sadoughi university of medical sciences in Yazd, Iran. This center was established as the first infertility center in Iran in 8. Therefore, it has attracted the infertile couples from all over the country. The study was carried out during This questionnaire-based survey was designed to evaluate the attitudes and knowledge of infertile couples on different aspects of ED. The study population comprised 120 infertiles of both sexes (61 women and 5 men) of ages willing to participate in this questionnaire-based study. This survey was conducted on Shiaa Muslims population in a country which is dominated by Shiaa regulation. The questionnaire form consisted of two parts. Part I contained questions to determine the demographic characteristics of all infertile participants. Part II consisted of 17 multiple choice questions to reveal both knowledge and attitudes of respondents about application of ED program in Iran. The participants were given the choice to choose only one answer-,, Do not know. However, the majorities were specific about their response, and decided to choose either or responces. For comparison of their attitudes in regards to their sex and age, the participantss were divided into women and men; also subjects and years of age. The study was approved by ethics committee of our infertility center. For analysis of data, the results generated between both sexes and different age groups of and. Results Demographic Information Nearly half of the patients of both sexes were years old. Also, the majority of the participants were from provinces other than Yazd. % of the females were housewives; while, % of men were employed. In addition, the majority belonged to the age group of 18-3, which represents the population of reproductive age (Table I). Knowledge and Attitudes towards ED The majority of participants were supporting the ED treatment for helping childless couples. Patients were more in favor of ED than other patient group. 0

3 فصلنامهي اخلاق در علوم و فن اوري سال دوم شمارههاي 1 و 2 بهار و تابستان 86 Table 1. Demographic characteristics of the infertile participants Characteristics Women Educational Level Primary School High School University Age Group > Most of the participants claimed that if they had a child by ED, they would never tell their friends or family members about it. Half of the participants thought that childlessness would have an impact on the relationship with their spouses. Also, only a limited number of the subjects thought that although genetics play some role in what we are, but the way we are brought up was more important. In addition, nearly half of participating men and women thought that couples can love their child resulted from ED as much as a genetic child. Almost 70% of infertile patients were in favor concerning the importance that the child should physically resemble them (Table 2). Religious and ethical issues on ED Near half of the patients were unaware that their religion would permit ED or not. 21% of females and 13% of men thought that ED is not permissible by Islam. There were no differences between the age groups in regards to their knowledge on religious aspect of ED. Majority of the participants believed both recipient and donor should have a counseling session for any problem they should face to it in ED process (Table 3). Table 2. The answer to questions about "Knowledge and attitude towards ED" 1. Do you support the ED program for selected infertile couples? If you had an ED child, would you inform your friends and relatives? If you would remain childless, do you think that it would have an impact on your relationship with your spouse? I think that genetics play some role in what we are; but, the way we are brought up (environmental influence) is more important. Don't know I think that it is possible for a mother and father to love and care for an ED child as much as a genetic child It is important for me that my child looks like myself

4 دكتر قاسمي و همكاران: Couples.. Knowledge and Attitudes of Infertile Table 3. The answer to questions about "religious and ethical issues on ED" 1. Would your religion accepts ED for infertility treatment? 13 8 Don t know Is it necessary to have psychological counseling for 3 47 both recipient and embryo donor? Disclosure to the child The vast majority of the respondents reported that the knowledge of the infertility treatment with ED should be restricted to the couple and their doctor only, and the offspring should never be informed about it. Also, 44% of women and 53% of men believed that the child has the right to know about his/ her genetic tie (Table 4). Objections towards ED Approximately, 38% of women and 34% of men were opposed to ED. Other alternatives, such as child adoption was not accepted by the majority of this group of ED opponents (Table 5). Right of embryo donors Almost 6% of the participants were of the opinion that the embryo donor has no right to claim the child and should therefore not cause any trouble for the receiving couple. Also, one-third of participants were in favor of the idea that the age of the women do not limit of receiving donated embryos. The majority believed that women of reproductive age should seek ED (Table 6). Confidentiality The majority believed that only couples and their physicians should be aware of ED treatment; while, half of them stated that the resulted child should never know that she/ he was born from ED. Majority of them believed that recipient should not know the name and address of embryo donor (Table 7). Table 4. The answer to questions about "Disclosure to the child" 1. If people need ED, the treatment should be kept 52 4 between the couples and their physician, only! 2. A child should never know that he/she is born from ED

5 فصلنامهي اخلاق در علوم و فن اوري سال دوم شمارههاي 1 و 2 بهار و تابستان 86 Table5. The answer to questions about "Objection towards ED" 4. Would you choose ED to overcome your infertility? Do you think that it is better to adopt a child than to try and have one via ED? Table 6. The answer to questions about "Right to embryo donors". Should there be any age restriction for recipient of embryo? Don t know Are the recipients concerned about whether a donor may try to find the baby and claim it as her owns? Discussion The practice of ED involves religious, ethical, social, and psychological issues. Different aspect of ED program such as, knowledge of general public or infertile patients, known and anonymous donors, age limits for donors and recipients, secrecy or disclosure to the children of ED have been debated since the introduction of ED (5,8-). The results generated from this study showed that the majority of Iranian infertile couples, with different educational background, support ED as an alternative way of overcoming infertility, a finding in line with the results of Isikoglu et al. (2006) from Turkey (7). Table 7. The answer to questions about "Confidentiality" 7. Do you think that recipient of embryo should know the name and address of embryo donor? If people need ED, the treatment should be kept between the couples and their physician, only! A child should never know that he/she is born from ED

6 دكتر قاسمي و همكاران: Couples.. Knowledge and Attitudes of Infertile The positive attitudes towards ED may be due to the fact that it implies a biological link between the offspring and both parents. Although, the recipient is not genetically linked, she will enjoy carrying the fetus biologically, and takes care of the nursing. This shows that people, in general, give the priority of having a full family with children. In familybased culture, such as ours, infertility is considered as a major public problem, which may affect the spouse relationships or even threat their marriage. This stressful situation becomes even more serious when the wife is encountered with infertility (11). Therefore, it seems that whether the legislation restricts the practice of ED in Islamic countries, such as Turkey (7), or legally permits it, like in Iran, infertile people are usually in support of third party assisted reproduction treatment for the right candidates. Although, both age groups had positive attitudes, over 68% of older age group were in favor of ED to be offered to infertile couples, in order to rescue their marital relationships. In their survey, Bangsboll and co-workers observed that one-third of the respondents were supporting ED (1). Therefore, it seems that the publics in societies with even different ethnic or religious background are usually in support of ED practice. However, the main differences between Muslim versus non-muslim countries, is that the publics from Islamic societies support the ED only for married infertile couples, and not for partners or homosexuals (12,14). As far as the religious issues are concerned, over 3% of the patients did not know whether their religions permit ED or not. Also, over 20% of females thought that ED is not permissible by Islam. In Iran, however, Muslims religious scholars have already permitted the practice of ED for married infertile couples. This is because third party reproduction is not involved with sexual relationship- only viable embryos are donated for treatment purposes. This will definitely assist the childless couple to enjoy the fulfillment of their family, and limit the worries about their possible marital crisis. Therefore, this may challenge the religious scholars and legislations from other Muslim countries to give the issue more thoughts (7,14). Sometimes, the recipients have worries about the donors. One concern is that she will not be able to separate emotionally from her embryos, and that as pregnancy progresses, the growing fetus will feel like her own child (15,16). Our data indicated that half of our respondents believed that the donors did not have the right to claim the offspring, which is in line with previous report. Another important issue to point out is disclosure or non-disclosure to the children of ED treatment. The question of the ED children's right to know their true identity has generated worldwide discussion (2, 5, 6,, 15- ). The parents are usually confused about when and how to tell the child about his/ her origin 17. Half of our respondents believed that the children should not be aware of their origin. Our results also showed that Iranian couples were more positive towards not telling the child than other nationalities already investigated by others (, 13, 15, ). Therefore, our respondents believed that it is not necessary to inform the child that she/ he is the result of ED. However, some known donor embryo couples choose to be open about sharing the information with others, including the child. Those who choose to be open with their child do so because they feel comfortable with using a third party for purposes of reproduction, and they want to maintain an open, trusting relationship with their child (, 13, 18). Finally, they believe that their child has the right to know about his/ her genetic origins for medical as well as psychological reasons (). Couples who decide to keep the donation a secret, fear that the child would be confused to learn that the gestatingrearing mother and the genetic mother were not the same person. They may also fear that their child 4

7 فصلنامهي اخلاق در علوم و فن اوري سال دوم شمارههاي 1 و 2 بهار و تابستان 86 would become angry and reject the mother if she/ he were to learn the truth. Finally, they worry that the child may not be accepted as readily by others such as family members, friends, and acquaintances. Whereas most countries, such as ours, continue to support the anonymous donation, children have the right to receive information about the donor in many western societies (13, 15, 18, ). The purpose of the counseling is to assess the psychological readiness of the couple to undergo ED and to help the couple anticipate the short and long term social, psychological, and ethical implications of ED (2, 3). The American Society for Reproductive Medicine (ASRM) guidelines for ED recommended comprehensive psychological assessment for donors as well as recipients of embryos (3). This is to ensure that they will be fully aware of all relevant aspects of the assisted reproduction with ED. The majority of our respondents believed that psychological counseling is necessary for both embryo donor as well as recipient. However, 36% and 20% of participating women and men disagreed with the counseling issue, respectively. Counseling offered to recipients are to make sure they are giving informed consent, are aware of the medical and the psychological risks involved, and understand the ethical and emotional issues involved in creating families through the process of ED (2-4, 13). Another controversial issue is related to the age of the embryo recipients. Among the respondents in our survey, the majority stated that there should be an age restriction for recipient of embryos. It seems that general publics feel that it is not fair to children to be raised by parents who look and probably act much like grandparents. It may also leave the children with worrisome about the adolescent years. As a result, our respondents considered an age limit for recipients in ED program. In conclusion, the majority of respondents support the ED as an alternative way of starting a family for childless couples. Since, the majority of participants were unaware of their religious opinion regarding ED, more discussion should be stimulated among them. Also, the mass media should play more active role in informing the public about the ED in assisted reproduction. Acknowledgement The authors would like to thank the participants for their sincere cooperation during the course of this survey. References 1. Bangsboll S, Pinborg A, Yding AC, Nyboe AA. Patients attitudes towards donation of surplus cryopreserved embryos for treatment or research. Hum Reprod 2004; : Newton CR, McDermid A, Tekpetey E, Tummon IS. Embryo donation: attitudes toward donation procedures and factors predicting willingness to donate. Hum Reprod 2003; 18: The American Society for Reproductive Medicine. Guidelines for embryo donation in Fertil Steril 2004; 82: (Sup 1). 4. Soderstrom-Anttila V, Foudila T, Ripatti UR, Siegberg R. Embryo donation: outcome and attitudes among embryo donors and recipients. Hum Reprod 2001; 16: Kovacs GT, Breheny SA, Dear MJ. Embryo donation at an Australian university in-vitro fertilisatioon clinic: issues and outcomes. Med J Aust 2003; 178: Krones T, Neuwohner E, Bock K, Manolopoulos K, Tinneberg HR, Richter G. Attitudes of patients, healthcare professionals and ethicists towards embryonic stem cell research and donation of gametes and embryos in Germany. Reprod Biomed Online 2006; 13: Isikoglu M, Senol Y, Berkkanoglu M, Ozgur K, Donmez L, Stones-Abbasi A. Public opinion regarding oocyte donation in Turkey: first data from a secular population among the Islamic world. Hum Reprod 2006; 21: 8-. 5

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