Public opinion regarding oocyte donation in Sweden

A.Skoog Svanberg1,4, C. Lampic2, T. Bergh3 and Ö. Lundkvist1

1 Department of Women’s and Children’s Health, Uppsala University Hospital, S-751 85 Uppsala, 2 Department of Public Health and Caring Sciences, Uppsala University, Uppsala and 3 Carl von Linné Kliniken, Uppsala, Sweden

4 To whom correspondence should be addressed. e-mail: skoog.svanberg{at}swipnet.se


    Abstract
 Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
 Conclusion
 References
 
BACKGROUND: Oocyte donation has been permitted by Swedish legislation since January 2003. According to the law, offspring have the right to receive identifying information about the donor when they reach a mature age. The aim of the present study was to investigate public opinion regarding different aspects of oocyte donation. METHODS: A study-specific questionnaire regarding attitudes towards aspects of oocyte donation was sent to a randomized sample of 1000 women (73% response) and 1000 men (56% response). RESULTS: A majority of respondents supported treatment with oocyte donation. Seventeen per cent of the women considered donating in the future, whereas 56% of the men would support their partner. While nearly half of the respondents considered that offspring should receive identifying information of the donor, one-third were opposed to this. Overall, women were more positive towards disclosure to the offspring than were men (P < 0.001). CONCLUSIONS: The present results indicate strong support for the use of oocyte donation among a subset of the Swedish population. There was considerable interest among women in donating oocytes anonymously. While a majority advocated openness regarding the donation between parents and child, there was less support for the offspring to have a legal right to receive identifying information about their donor.

Key words: attitude/disclosure/gender/oocyte donation/public


    Introduction
 Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
 Conclusion
 References
 
Oocyte donation has been permitted by Swedish legislation since January 2003. Internationally, clinics have been practising oocyte donation since its introduction in the year 1984. Today, several thousands of children are born after conception by this method every year (Greenfeld, 2002Go). Gamete donation involves ethical, social and psychological issues, which have generated worldwide discussion. Different aspects of the choice between known and anonymous donors are debated (Sauer et al., 1988Go; Greenfield et al., 1995Go; Khamsi et al., 1997Go; Shenfield and Steele, 1997Go; McWhinnie, 2001Go; Söderström-Anttila et al., 2001Go), as well as age limits for recipients (Bowman and Saunders, 1994Go; Hovatta, 2000Go), compensation for donors (Shenfield and Steele, 1995Go; Lyall et al., 1998Go; German et al., 2001Go) and secrecy or disclosure to the children born from donation (Leiblum and Aviv, 1997Go; Nachtigall et al., 1997Go; Golombok et al., 1999Go; Rumball and Adair, 1999Go; Gottlieb et al., 2000Go; Lindblad et al., 2000Go). Sweden was the first country to give children born as a result of donor insemination the legal right to receive information about the donor’s identity (SFS, 1984Go). This law also applies to oocyte donation, which, as mentioned above, has been available to couples since January 2003. In the past Sweden has had more restrictive regulation of assisted reproductive technologies compared with many other countries (Hazekamp, 1996Go). However, in a study on attitudes of different groups of infertile and fertile women towards oocyte donation in Sweden (Westlander et al., 1998Go), it was found that, as in many other countries (Bowman and Saunders, 1994Go; Kazem et al., 1995Go; Lyall et al., 1995Go), a majority were positive towards this method.

Most couples have a strong desire to have children of their own, and women in particular have been reported to attach great importance to biological motherhood (Ravin et al., 1997Go). Several studies have shown how infertility affects women and men psychologically (Möller, 1985Go; Wright et al., 1989Go; Connolly et al., 1992Go; Wirtberg, 1992Go). To judge from women’s and men’s reactions to, and attitudes towards, infertility, they seem to cope in different ways (Möller, 1985Go; Collins et al., 1992Go; Wirtberg, 1992Go; Hjelmstedt et al., 1999Go). In contrast, there seem to be similarities between the genders in the pattern of distress and optimistic reactions during the procedure of IVF (Boivin et al., 1998Go). A few comparisons of women’s and men’s attitudes towards oocyte donation have shown that more men than women consider the genetic tie to be of importance (Appelgarth et al., 1995Go; Ravin et al., 1997Go). In addition, the attitudes of women and men towards gamete donation tend to be related to their personal experience of infertility (Braverman and Corson, 1995Go; Kazem et al., 1995Go).

In the area of assisted reproductive technology, the public have rarely had the opportunity to voice an opinion and there are few examples of studies on this issue (Lessor et al., 1990Go; Bolton et al., 1991Go; Genuis et al., 1993Go; Bowman and Saunders, 1994Go). The public appear to have more reservations on this subject than infertility patients, and to be more concerned about the status and welfare of the donor (Bolton et al., 1991Go). Many of the studies have also included groups that have already been involved in assisted reproduction and most studies have been made on small or selected groups (Bowman and Saunders, 1994Go; Broderick and Walker, 1995Go; Kazem et al., 1995Go; Westlander et al., 1998Go). Against this background, our overall aim was to investigate the attitudes towards different aspects of oocyte donation among a large group of the Swedish general public. Our interest was mainly focused on possible differences with regard to gender. We wished to answer the following specific research questions: (i) Are there significant differences between the attitudes of women and men towards (a) different aspects of oocyte donation, (b) disclosure of information regarding the genetic origin to the offspring, and (c) the importance of parenthood and the genetic tie between parent and child? (ii) Are there any differences with respect to these attitudes between subgroups formed on the basis of personal experience of infertility, or their own experience of parenthood? (iii) To what extent are women and men willing to participate in oocyte donation, either as a donor (or partner of a donor) or as a recipient?


    Materials and methods
 Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
 Conclusion
 References
 
Procedure
A questionnaire-based survey was carried out in the county of Uppsala, Sweden, in February 2002. About 2 months before the decision to introduce oocyte donation was made in the Swedish Parliament, a questionnaire was mailed to a selected sample of women and men (see below), together with an accompanying letter explaining the purpose of the study and an invitation to participate. In addition, the proposed law, including the stipulation that at a mature age the children should have the right to obtain identifying information about the donor, was briefly described, as also was the procedure of oocyte donation. A first reminder was sent after 1 week. One week later, a second reminder with a new questionnaire was sent to non-responders. After another 2 weeks, a third reminder was sent out to non-responders. This included a short version of the questionnaire containing questions regarding the background data and the willingness to donate. The Local Ethics Committee of the Medical Faculty of Uppsala University approved the study.

Participants
The study population comprised 1000 women aged 25–35 years and 1000 men aged 25–40 years. These particular age groups were chosen because they roughly represented the populations of potential oocyte donors and recipients, and their partners. Participants were randomly selected from the national tax registration record. A total of 729 of the 1000 women (73%) and 556 of the 1000 men (56%) completed the questionnaire. Fifty-six (2.8%) returned the envelopes for the following reasons: mentally handicapped, difficulties in understanding Swedish, living abroad, and moved without giving a new address. As the third reminder included a shorter version, 37 women (3.7%) and 43 men (4.3%) answered only some of the questions. Demographic data for the respondents are presented in Table I.


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Table I. Demographic data of women and men participating in the study
 
The county of Uppsala is divided into six municipalities and is situated geographically on the Baltic coast in central Sweden. The county has a population of ~300 000 inhabitants. The municipality of Uppsala has 180 000 inhabitants and the remaining five municipalities have between 9000 and 37 000 inhabitants and are more rural areas. The proportion of respondents with college or university education was larger (43%) than the proportion among the inhabitants of the county of Uppsala (35%) and of the whole of Sweden (29%). A great majority of the responders were born in Sweden (90%). In comparison with male responders, significantly higher proportions of women were married/co-habitants, had experience of infertility among friends, and had knowledge of oocyte donation prior to the survey. There were higher percentages of non-responders in rural areas (35–47%) than in the largest town, Uppsala (27%). Non-responders and responders did not differ with regard to age.

The instrument
A study-specific questionnaire was constructed on the basis of earlier research and of exploratory interviews of eight women and two men. A pool of items was formulated, covering attitudes towards various aspects of oocyte donation. Relevant items were selected in order to measure attitudes towards oocyte donation in general, specific aspects of donors and recipients, informing offspring of their origin, parenthood, and the importance of having the genetic tie between parents and child. A pilot study was performed on a group of student nurses (n = 25). Based on these results and comments from these students, the questionnaire was revised. The final version included four subscales measuring attitudes towards oocyte donation in general (five items), information to offspring (six items), parenthood (six items), and the importance of the genetic tie (four items). Satisfactory internal validity was indicated by a finding of Cronbach alpha values of 0.67, 0.80, 0.86 and 0.78 respectively (Cronbach, 1990Go) The respondents were asked to indicate to what extent each attitude statement applied to them on a 5-point scale with the following anchor points: ‘strongly agree’, ‘agree somewhat’, ‘neutral’, ‘disagree somewhat’ and ‘strongly disagree’. For each statement it was possible to respond ‘cannot form an opinion’. The women’s willingness to donate oocytes anonymously in the future (or in the case of men the willingness to support such donation) was assessed by the responses ‘yes, probably’, ‘no’ or ‘perhaps/I do not know’. Multiple responses were used for questions concerning what methods the responders would consider turning to in the event of infertility. In addition, the questionnaire included items measuring different aspects of women’s willingness to donate, results of which will be reported elsewhere.

When compiled in tables, the responses were organized into three categories. The two positive attitudes ‘strongly agree’ and ‘agree somewhat’ and the two negative attitudes ‘disagree somewhat’ and ‘strongly disagree’ were collapsed into two groups, agree and disagree. The attitude ‘neutral’ remained single (Tables II, III and IV).


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Table II. Women’s and men’s attitudes towards oocyte donation in generala
 

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Table III. Women’s and men’s evaluation of specific circumstances in the procedure of oocyte donationa
 

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Table IV. Women’s and men’s attitudes towards disclosure or secrecy to the offspringa
 
Data analysis
Comparisons of women’s and men’s background data and comparisons of women’s and men’s choices of assisted reproduction methods were performed with {chi}2-tests. Median values were calculated for each attitude subscale and person (Svensson, 2001Go). Some items were reversed so that higher scores consistently indicated a positive attitude towards each aspect of the four subscales. The Mann–Whitney U-test was used for comparing median scores of (i) women and men, (ii) responders with and without experience of infertility, (iii) responders with and without children of their own and (iv) responders who had and did not have previous information regarding oocyte donation. Respondents who could not form an opinion for more than one-third of the items in a subscale were excluded. For comparisons of single statements, the Mann–Whitney U-test was used on original five-step data. P < 0.05 was considered significant.


    Results
 Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
 Conclusion
 References
 
Attitudes towards different aspects of oocyte donation
The statement ‘oocyte donation is a good way to help childless couples’ was supported by a majority of both the women (72%) and men (71%) (Table II). With regard to general attitudes towards oocyte donation, women were significantly more positive than men (subscale P < 0.001). Women would be more supportive to a friend who would like to donate and to a friend who would like to receive oocytes compared with men (P < 0.001). Regarding specific circumstances of oocyte donation (Table III), almost half of the respondents were of the opinion that the oocyte donor and the receiving couple should be anonymous (unknown) to one another. Women were significantly more in favour of the idea that only women aged <43 years of age should receive donated oocytes (P < 0.05) (Table III). Respondents with experience of infertility were significantly more negative towards an age limit compared with responders without infertility experience (P < 0.05), and respondents with no children were significantly more in favour of having an age limit than respondents with children of their own (P < 0.001).

Disclosure to the child
A majority of both women and men considered that ‘children conceived through egg donation should have the right to know about their genetic origin’ and that ‘parents should be honest with their children with regard to their genetic origin’ (Table IV); however, women agreed significantly more strongly with the statements (P < 0.01). Women and men expressed a similar attitude towards the statement ‘as an adult, the child should be able to find out the identity of the egg donor’. Almost half of the respondents agreed with this and about one-third disagreed. Overall, women had a significantly more positive attitude towards disclosure to the child compared with men (subscale P < 0.001). Respondents who had received information about oocyte donation before the survey were more in favour of letting the children be told about their origin than respondents without such information (subscale P < 0.05).

The importance of the genetic tie
The men placed significantly more importance on the genetic tie than did the women (subscale P < 0.001). The statements ‘the genetic link between father and child is important’ and ‘the ‘genetic link between mother and child is important’ were agreed with by 40% of the men and 30% of the women. Forty-five per cent of the women and 33% of the men disagreed with these statements that the genetic tie was important (P < 0.001). Women and men had similar attitudes concerning the importance that the child should resemble them physically and in terms of behaviour (20 and 23% respectively were in agreement with this).

The importance of parenthood
A majority of the respondents agreed with the two statements ‘having children is the most important thing in life’ (women 78%, men 67%; P < 0.001) and ‘a child is an expression of love shared by two people’ (women 79%, men 69%), although women agreed more strongly (P < 0.001). Women were significantly more positive to the idea that ‘having a child is the whole purpose of life’ compared with men (63 and 46% respectively; P < 0.001). A majority of both women and men were negative to the two statements ‘having children means losing your freedom’ (women 71%, men 60%; P < 0.001) and ‘self-fulfilment is difficult to attain if you have children (women 78%, men 68%; P < 0.01). Overall, different aspects of having children were of significantly greater importance to women than to men (subscale P < 0.001). In addition, respondents with experience of infertility were significantly more positive concerning the importance of having children compared with those without such experience (subscale P < 0.01). Respondents with children of their own had more positive attitudes towards having children than those without children (subscale P < 0.001).

The willingness to participate in donation in the future
Seventeen per cent of the women would consider donating oocytes anonymously to another woman in the future, whereas 56% of the men would support their girl-friend/wife if she wanted to donate. Thirty-nine per cent of the women were opposed to the idea of being donors themselves, while 18% of the men were opposed to supporting a donation by their partner. The rest of the women (44%) and 25% of the men felt unsure or could not form an opinion. Neither experience of infertility nor having children of their own was associated with women’s willingness to donate.

Regarding what methods the subjects would turn to in the event of difficulties in having a child of their own (Table V), a larger proportion of men than of women considered that anonymous oocyte donation was acceptable (P < 0.001). Donated oocytes from a friend/relative were favoured less frequently by both women and men.


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Table V. Women’s and men’s choices, according to the questionnaire, of what methods they would accept when facing difficulties in having a child of their own
 

    Discussion
 Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
 Conclusion
 References
 
Oocyte donation and anonymity
The present results indicate that, in general, Swedish women and men of childbearing age support oocyte donation as an alternative way of starting a family, a finding in line with previous reports (Bolton et al., 1991Go; Genuis et al., 1993Go; Bowman and Saunders, 1994Go; Kazem et al., 1995Go; Lyall et al., 1995Go; Westlander et al., 1998Go). The finding that the majority of the respondents were in favour of anonymous oocyte donation is in agreement with earlier results (Lessor et al., 1990Go; Westlander et al., 1998Go). Anonymity in this context has a high priority among donors (Khamsi et al., 1997Go), but even when the donation is made anonymously there has been interest among donors to receive information about the outcome of the donation (Kalfoglou and Geller, 2000Go). The current Swedish legislation allows the donor to be anonymous during the donation procedure even if she may not remain so when the child becomes older. It has been suggested that the wish for anonymity may reflect a concern that donor identification might pose a threat to the family relationships, and may also reflect a wish to protect the donor (Baetens et al., 2000Go). A minor proportion of the respondents considered that the woman donating oocytes and the couple receiving them should be friends or relatives. This group was small in comparison with findings in previous research (Sauer et al., 1988Go; Greenfield et al., 1998Go). A considerable number of respondents reported a neutral attitude or stated that they could not form an opinion regarding the relationship between the donor and the recipient couple. This might indicate how difficult it is in general to visualize the consequences of these different scenarios for donors, recipients and offspring. Clinics in many countries have difficulties in recruiting altruistically motivated fertile women who would like to donate (Söderström-Anttila et al., 2001Go), and use different strategies for recruitment (Weil et al., 1994Go; Englert et al., 1996Go; Ahuja et al., 1998Go; Fielding et al., 1998Go; Baetens et al., 2000Go; Söderström-Anttila et al., 2001Go). The present study showed that more women and men were positive towards recruitment of donors among women undergoing IVF or sterilization than towards advertising in newspapers for donors.

Disclosure or non-disclosure to the children
A great majority of the respondents considered that the children should be told about their origin. This number was larger compared with those earlier reported by other authors for recipients, donors or potential donors (Appelgarth et al., 1995Go; Nachtigall et al., 1997Go; Abdalla et al., 1998Go; Greenfield et al., 1998Go; Söderström-Anttila et al., 1998Go; Rumball and Adair, 1999Go; Gottlieb et al., 2000Go; Hovatta, 2000Go; Lindblad et al., 2000Go; McWhinnie, 2001Go; Golombok et al., 2002Go). Most psychologists and therapists familiar with these issues recommend openness with the child to ensure a harmonious relationship between the parents and their child. It might be more difficult, however, to tell the child if information about the donor is not available. Our results confirm an earlier finding that women were more positive towards telling the child than men were (Braverman and Corson, 1995Go). Women and men did not differ in their opinion as to whether the child should receive information on the identity of the oocyte donor. More important was the finding that, half of the women and men were positive to the idea that offspring from oocyte donation should receive identifying information, in agreement with previous reports (Söderström-Anttila et al., 1998Go; Urdapilleta et al., 2001Go). However, one-third of the respondents were opposed to this. A recent follow-up study of donor insemination in Sweden showed that only a minor proportion of the recipient couples had in fact told the child of its origin (Gottlieb et al., 2000Go). These researchers concluded that there is a need to stimulate ethical discussions within the responsible professional groups. Doctors, midwives and laboratory staff working at clinics probably have an important impact on the couples’ attitudes towards disclosure. Among our respondents, those who had received some information about oocyte donation before our survey were more in favour of telling the child of its origin than those without such information. Those respondents might have had more time to think over the question of donation and with time might have become more concerned about the child’s point of view. Arguments in favour of telling the children have been based on experiences from studies of adopted children, who have emphasized the need for and desire to obtain knowledge about their heritage. Other arguments for disclosure are based on fear that the donation might be exposed by external events or by comments to the children later on in life, since results from research have shown that recipient couples do tell others about the donation (Gottlieb et al., 2000Go).

The importance of parenthood
The social and biological drive to reproduce, coupled with social institutions that promote having children, makes a diagnosis of infertility particularly stressful. Not surprisingly, in the current study both women and men with experience of infertility or of having children of their own were more positive towards having children. Moreover, the present results showed that women valued parenthood more than men, which is in line with previous observations that women reacted more strongly than men to their infertility (Hjelmstedt et al., 1999Go). There have been reports on gender differences with regard to coping with infertility (Newton et al., 1990Go; Beaurepaire et al., 1994Go; Edelmann et al., 1994Go) and attitudes towards donation (Braverman and Corson, 1995Go; Kazem et al., 1995Go). The gender differences observed in previous studies have been attributed to general social and biological factors and also to a general discrepancy in emotional profile.

The willingness to donate and receive oocytes, and the importance of the genetic tie
Among the respondents in our investigation, one in six of the women considered donating oocytes in the future to women they did not know. However, women’s hypothetical willingness to donate oocytes expressed in a questionnaire are likely to differ from their actual behaviour, as suggested by earlier reported difficulties in recruiting non-related donors (Gorrill et al., 2001Go). The finding that a majority of the men would support their partner’s decision to donate oocytes was somewhat surprising, considering the fact that they placed more importance on the genetic tie between parent and child than did the women. In addition, men were also more positive than women towards receiving oocytes if they and their partner were experiencing infertility. Possible explanations for this include the fact that the men’s physical efforts in regard to donating or receiving oocytes are much smaller than the women’s, and that it is not men’s genetic material that is being donated or replaced by some one else’s. While it is likely that people’s willingness to receive oocytes is related to their status of fertility, there were no significant differences regarding this issue between respondents with and without personal experience of infertility. The positive attitudes expressed towards oocyte donation may be due to the fact that it implies a biological link between the child and both parents. Whereas the man is genetically linked, the recipient woman carries the fetus biologically and nurses the baby. If this were true, one would also expect less favourable attitudes towards anonymous sperm donation, which was in fact confirmed in the present study. It has also been discussed whether women choose the gestational tie to realize their body capacity for pregnancy and childbirth. When women and men were asked what methods they would consider acceptable for their own treatment, a surprisingly large proportion chose known donation. This indicates that the wish to have knowledge of the genetic origin of the oocyte might be stronger from the point of view of recipients (Baetens et al., 2000Go). In view of the new possibilities of identifying and treating genetic diseases, the question about genetic heritage may become increasingly important.

Limitations of the study
In this report we present attitude data concerning new medical technology, compiled for a large, randomized sample of the Swedish population. Considering the topic of the present study, we expected a higher response rate among women than among men. Nevertheless, the relatively low response rate among men limits the conclusions that can be drawn from the results for the male sample. In addition, there were indications of response bias with respect to educational level, geographical setting and ethnic background (a large proportion of foreign names among non-respondents). Separate analyses (data not shown) indicated that respondents born outside Sweden were significantly less positive towards oocyte donation in general and disclosure to the child than were respondents born in Sweden. However, there was no group difference with regard to women’s willingness to donate oocytes. The questionnaire was constructed specially for this survey in order to ask questions appropriate for the current legal circumstances. The use of non-standardized questions limits the possibilities of validating the questionnaire and the generalizability of the results. For this reason the study results should be regarded as trends among the Swedish public.


    Conclusion
 Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
 Conclusion
 References
 
The present findings indicate that a great majority among a subset of the Swedish public support oocyte donation as an alternative way of starting a family. A considerable proportion of the women considered donating oocytes anonymously in the future, even though they were informed that the child could be given identifying information on his or her donor. More than half of the men were willing to support their wives or girl-friends if they wanted to donate oocytes, although the men valued the genetic tie more than did the women. Having children was found to be more important for women than for men, and women were more positive towards disclosure to the child. While half of both the women and the men considered that the offspring should have the right to obtain identifying information about the donor, one-third were opposed to this. Experience of infertility or having children of their own did not influence the attitudes concerning oocyte donation or the willingness to donate.

The rapid development of new methods in assisted reproduction has created expectations in and demands from infertile couples, and treatment with donated gametes has become more widely available. Nowadays it seems not to be a question of whether, but how, the assisted reproductive technology should be used. The Swedish public seems to agree with the law regarding the offspring’s right to obtain information about his or her origin. However, it is important to keep in mind that not all of the participants were convinced that the offspring should have identifying information about the donor. This could have implications regarding the way information on this important issue is given to the recipient couples at the infertility clinics. Our study results indicate that the recipient couples should be given time and opportunities to discuss with the staff all the possible consequences of donation.


    Acknowledgements
 
The authors wish to thank Johan Bring at Statisticon AB, Uppsala, for statistical advice, Vera Holmgren at the Department of Women’s and Children’s Health and the Staff at the Centre for Reproduction, University Hospital, Uppsala for information and help during the study. This study was supported financially from the Foundation of Family Planning and Postgraduate Studies Committee in Uppsala.


    References
 Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
 Conclusion
 References
 
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Submitted on November 8, 2002; accepted on January 29, 2003.