1 Department of Womens and Childrens Health, 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
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Abstract |
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Key words: attitude/disclosure/oocyte donation/potential donor/public
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Introduction |
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Oocyte donors are often described as being of a young age, often mothers who are altruistically motivated, except for in a few countries, where oocyte donation can have a financial motivation (German et al., 2001; Greenfeld, 2002
). Recruitment of oocyte donors appears to be a challenge for most infertility clinics (Englert et al., 1996
). A previous study (Gorrill et al., 2001
) showed that only 12% of the women who responded to a donor recruiting advertisement were finally included in the donor pool. A shortage of donors has generated a need for clinics to obtain more knowledge about how to attract donors. In one study concerning attitudes of donors towards the oocyte donation process (Kalfoglou and Geller, 2000a
), it was suggested that oocyte donation programmes should show greater flexibility with regard to both anonymity and information about the outcome in order to attract potential donors. Logistic difficulties for donors associated with transport problems, social commitments and concerns about complications have been described (Kan et al., 1998
), and proposals have been made for possible improvements of the donation routines with the aim of attracting potential oocyte donors (Kalfoglou and Geller, 2000b
). Former donors have suggested that infertility clinics should organize discussion groups for anonymous donors to provide post-donation support (Partrick et al., 2001
).
A recent study indicated that the Swedish public has a generally positive attitude towards different aspects of oocyte donation (Skoog Svanberg et al., 2003) As of January 2003, oocyte donation has been permitted in Sweden. While donors are anonymous to the receiving couple, offspring have the legal right to receive identifying information about the donor when they reach adult age. Sweden is one of the few countries in which children conceived by gamete donation have the legal right to receive information about the donors identity (SFS, 1984
). This means that the women who are willing to donate oocytes must accept the fact that they can become identified by the offspring in the future. Against this background, our interest in the present study focused mainly on factors of potential importance for womens willingness to donate oocytes. The following specific research questions were addressed. (i) Are there significant differences between groups of women categorized according to their willingness to donate oocytes with regard to (a) demographic data; (b) their attitudes towards oocyte donation in general, as well as to parenthood, the importance of the genetic link and disclosure of genetic information to offspring; and (c) their response to a recruitment advertisement? (ii) How do potential donors perceive the act of donating oocytes with regard to personal consequences, social support, values and perceived control? (iii) What factors would induce women to donate oocytes?
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Materials and methods |
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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, 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 offspring should have the right to obtain identifying donor information, was briefly described, as also was the procedure of oocyte donation. Three reminders were sent to non-respondents. The study was approved by the Local Ethics Committee of the Medical Faculty of Uppsala University.
Participants
The study population comprised 1000 women of ages 2535 years in the county of Uppsala. Women of this particular age group were chosen because they roughly represent the populations of potential oocyte donors and recipients. The women were randomly selected from the national tax registration record. A total of 729 women (73%) completed the questionnaire. Since the third reminder included a shorter version of the questionnaire, 37 women (3.7%) answered only some of the questions. Twenty-four (2.4%) questionnaires were returned unanswered because the addressees were either mentally handicapped, had difficulties in understanding Swedish, were living abroad or had moved without giving a new address.
The proportion of respondents with college or university education (41%) was similar to the proportion among the inhabitants of the county of Uppsala (38%) and of the whole of Sweden (32%). The proportion of non-responders was the same in rural areas (27%) as in the largest town, Uppsala (27%). Non-responders and responders did not differ with regard to age. Characteristics of participants are presented in Table I.
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The final version of the questionnaire included items covering the following areas. Some items were reversed so that higher scores consistently indicated a positive attitude.
The following questions were answered by all participants.
(i) Willingness to donate oocytes in the future (one item). The question was formulated would you consider anonymously donating oocytes at some point in the future? with response categories yes, maybe, I do not know or no.
(ii) Attitudes towards oocyte donation in general (five items). The items are presented in Table II. The response categories were formulated to indicate levels of agreement (strongly agree, agree somewhat, neutral, disagree somewhat and strongly disagree). Cronbachs was 0.67 (Cronbach, 1990
).
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(v) Attitudes towards the genetic link (four items). The items are presented in Table IV. The response categories were formulated to indicate levels of agreement. Cronbachs was 0.80.
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(vii) Response to a recruiting advertisement (four items). Respondents were asked to assess hypothetically their level of response after reading a recruiting advertisement concerning oocyte donation (Table V). The response categories were formulated to indicate levels of likelihood (most likely, rather likely, neutral, rather unlikely and most unlikely).
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(i) Attitudes to the consequences of oocyte donation (seven items). The items are presented in Table VI. Response categories were formulated to indicate levels of likelihood.
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(iii) Evaluation of the act of donation (four items).The act of oocyte donation was evaluated on four 5-point scales with endpoints very good and very bad, very sensible and very foolish, highly problem free and very problematic and very important and very unimportant. Each scale had a response neutral in the middle.
When the results were compiled in tables, data were organized into three categories instead of five. The two positive response categories and the two negative categories were collapsed into one group each. The attitude neutral remained single (Tables IIVI). Concerning the circumstances that would make women more likely to donate oocytes, only the positive responses definitely and probably are presented (Table VII).
Data analysis
Comparisons of background data between subgroups of women were performed with 2 tests. For comparisons of individual items between subgroups, the MannWhitney U-test was used on original five-step data. Median (Md) values were calculated for each attitude subscale and respondent (Svensson, 2001
). Comparisons of subscale medians between subgroups were performed with MannWhitney U-test. Respondents who could not form an opinion on more than one-third of the items in a subscale were excluded from the analysis. A P-value of <0.05 was considered statistically significant.
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Results |
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Differences in background data
The non-donors were more likely to have children of their own than were the other groups (Table I). Compared with the doubtful group, non-donors were older and more likely to have been born outside Sweden. Potential donors were more likely to have given blood compared with the other groups.
Differences in attitudes
The potential donors were more in favour of oocyte donation in general than were non-donors and the doubtful group (subscale P < 0.001) (Table II). In comparison with non-donors, the potential donors and the women in the doubtful group were more favourably disposed towards the idea of recruiting donors via the media among women undergoing IVF or sterilization, and more negative towards having an age limit of 43 years for oocyte receivers (Table III). In addition, the genetic link between parents and offspring was less important to potential donors than it was to the doubtful group and the non-donors (subscale P < 0.001) (Table IV). There were no group differences regarding the attitudes towards different aspects of parenthood or the attitudes towards disclosure of the genetic origin to offspring. The great majority in the three groups (7779%) were positive towards parents giving oocyte offspring information about the circumstances of the conception. In addition, almost half of the responding women (4348%) were positive towards giving the offspring information about the donors identity at a mature age, while one-third were opposed to this (2732%).
Differences in behavioural intentions
Regarding responses to a hypothetical advertisement for recruiting oocyte donors, significant differences were found between the three groups (Table V). Among potential donors, a majority would surf to the infertility clinics website for more information, and about one-third would attend an information meeting or contact the infertility clinic.
Perceptions by potential donors
Perceived consequences of oocyte donation
Almost all of the potential donors indicated that they would be happy about helping another couple by donating oocytes, and looked upon this as a contribution made to a fellow human being (Table VI). Almost half of the potential donors answered that they would not want any information regarding the well-being of the child, and one-third stated that they would not appreciate it if their biological child at a mature age tried to contact them. Twenty-two percent of the potential donors thought that they would brood about the donation for the rest of their lives.
Evaluation of the act of donation
Potential donors overall evaluation of the act of oocyte donation was positive (subscale Md 4). The majority of women indicated that they would feel that the act of donation was good (90%), sensible (72%) and important (75%). Fifteen percent of the potential donors thought that oocyte donation would be problematic.
Perceived support and perceived control over the behaviour
The persons/groups of persons whom potential donors most frequently reported that they would consult about the donation was the partner/husband (n = 103, 86%), the staff at the infertility clinic (n = 92, 77%) and friends (n = 67, 56%). Among those who reported that they would consult their partner/husband, almost all (91%) stated they would comply with the husbands/partners wishes. The advice of the infertility clinic would influence the majority (86%) of the women consulting them. Of those consulting friends, only 43% would follow their friends advice on this issue. While most potential donors (n = 96, 80%) believed that the important people in their lives would support their decision to donate oocytes, a majority (n = 89, 74%) stated that it was entirely up to them whether or not they would donate oocytes,
Circumstances that would induce more women to donate
Almost half of the respondents reported that they would be more likely to become oocyte donors if they were able to speak to women who had already donated oocytes, if they could undergo the procedure at a hospital in their area, and if they already had children of their own (Table VII). Other factors of importance were the possibility of receiving professional counselling, being given more information about what it is like to be infertile, and having complete anonymity and a shorter treatment period.
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Discussion |
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Motives of potential donors
The potential donors were generally more positive towards oocyte donation and regarded the genetic link between the parent and child to be of less importance compared with non-donors and the doubtful group, which is to be expected in women who are willing to donate oocytes. Among the potential donors, a higher proportion had experience of donating blood, indicating that there may be altruistic motives for donation, as suggested in a number of previous reports (Sauer et al., 1994; Söderström-Anttila, 1995
). However, according to our results, there is not necessarily an association between negative attitudes towards oocyte donation and negative attitudes towards the willingness to be a donor oneself. Even though women in the doubtful group and non-donor group hesitated or did not want to be donors themselves, positive attitudes were expressed towards oocyte donation as a method for helping infertile couples. In a follow-up study among oocyte donors (Kalfoglou and Geller, 2000b
), it was reported that half of the participants studied knew someone who had struggled or was currently struggling with infertility. This was also true for the majority of respondents in the present study, and there were similar numbers in the three groups. This indicates that there was no relationship between knowing persons with infertility problems and the intention to donate. As in previous follow-up reports of oocyte donors (Fielding et al., 1998
; Klock et al., 1998
; Partrick et al., 2001
), almost all potential donors indicated that they would be happy about helping another couple. The fact that a considerable proportion of this group also reported that they would always brood about the donation and that they would consider it problematic stresses the complexity of the decision to donate oocytes.
Disclosure to offspring
The question of the offsprings right to know about their origin has generated worldwide discussion (Leiblum and Aviv, 1997; Nachtigall et al., 1997
; Golombok et al., 1999
; Rumball and Adair, 1999
; Gottlieb et al., 2000
; Lindblad et al., 2000
). Disclosure to offspring seems to have two major components, namely the right to know about the circumstances of the conception and the right to obtain identifying information about the donor. Previous studies have shown that the majority of parents by gamete donation do not inform their children about the donation (Brewaeys et al., 1997
; Söderström-Anttila et al., 1998
; Gottlieb et al., 2000
); however, more parents by oocyte donation compared with sperm donors intend to inform the child (Golombok et al., 1999
). For this reason, the authors of a study concerning donor insemination in Sweden (Gottlieb et al., 2000
) raised the question of compliance with Swedish law. In practice, a child may only exercise her/his legal right to obtain identifying information of the donor if the parents inform her/him of the circumstances of the conception (Shenfield and Steele, 1997
). In the present study, one-third of potential donors were negative towards the idea of disclosing the donors identity to the offspring. It is known from previous research that when attempts were made to recruit women for oocyte donation programmes, about two-thirds who initially were interested withdraw voluntarily prior to donation (Gorrill et al., 2001
). Since children conceived by oocyte donation in Sweden have the legal right to obtain information about the donors identity, initially interested women opposed to disclosing the donors identity to the offspring may not be willing to donate their oocytes. If this proves to be the case, the proportion of potential oocyte donors will be smaller than indicated by our results. A common objection to becoming a donor seems to be the preferences among some women to remain anonymous all their lives, as also has been reported previously (Westlander et al., 1998
). A crucial finding among the group of potential donors in our survey was that one-third stated that they would not want the child to try to contact them when the child reached a mature age. However, whereas most countries continue to support anonymous donation, there are indications that more donors are willing to be identified and that public attitudes towards gamete donation are changing (Fasiouliotis and Schenker, 1999
; Greenfeld, 2002
). In addition, information about the outcome of the donation may influence the way in which donors interpret their experience. Finally, it should be noted that half of the potential donors were positive towards offspring obtaining identifying information about the donor, and that one-third would be glad if the offspring tried to contact them in the future.
Recruitment of oocyte donors
A typical oocyte donor is described as a married mother in her late twenties with altruistic ideas, who acts out of feminine solidarity and feels good about donating a gift to another woman (Sauer et al., 1994; Söderström-Anttila, 1995
). An interesting question is how to recruit such women, and many clinics place advertisements in magazines and newspapers. It was found in a previous report that tabloids were more effective than broadsheets in reaching potential donors (Kan et al., 1998
). The respondents in our study were instructed to read a hypothetical advertisement in a daily morning newspaper and were then asked how likely it was that they would react in certain proposed ways. While potential donors were most likely to engage in actions for gaining more information about the donation programme, one-third of the doubtful group reported that they would visit the recruiting clinics website. This suggests that the Internet is a good way of reaching women who want to obtain more information about oocyte donation without disclosing their identity. The Internet has already provided a forum for oocyte donors to interact both with each other and with infertility clinics (Kalfoglou and Geller, 2000a
). In our study, a considerable number of potential donors stated that they would not respond to the advertisement in any of the proposed ways. One possible explanation for this is that they needed more time for consideration or that they would consider donation at some future date. It has been concluded that improved donor satisfaction is likely to improve donor recruitment (Kalfoglou and Geller, 2000b
). Previous reports have pointed out different donor motivations (Greenfield et al., 1995
; Klock et al., 1998
). In the present study, financial compensation and future information about how the child is getting on were generally not among the priorities of respondents. Almost half of the respondents considered it important to talk to women who had already donated oocytes, supporting earlier findings (Partrick et al., 2001
). Communicating with other women who have donated oocytes may give the potential donor a neutral and realistic view of oocyte donation, and such communication could easily be arranged by the infertility clinic. Proximity to the infertility clinic was regarded as another important factor, a finding in line with results of previous qualitative follow-up studies of donors, which indicated that several practical improvements, including absence of transportation problems, would attract potential donors (Kalfoglou and Geller, 2000b
). The potential donors and the doubtful group gave considerable priority to some additional factors such as accessible counselling, more information about infertility, shorter treatment before donating oocytes and complete anonymity as a donor. More information about the struggle of couples to conceive, and learning more about the great demand for donated oocytes may make some women feel empathy and increase their motivation to donate, as has been suggested previously (Kalfoglou and Geller, 2000a
). In one study, stated reasons why women did not go through with the donation included the distance involved, the drug regime and fear of complications (Kan et al., 1998
). In Sweden, we should probably add to the above reasons the fear of a potential child contacting the donor.
The most important person that the potential donors said they would consult about the donation was the partner/husband, and almost all of the women indicated that they would comply with their partners/husbands wishes. However, the great majority of potential donors said that they believed that the important people in their lives would support their decision to donate oocytes. In the case of donor insemination, the support of the semen providers partner has previously been found to be important (Lalos et al., 2003). Also, it has been reported that many oocyte donors have been encouraged by their partners to participate in an oocyte donation programme (Söderström-Anttila, 1995
). Among randomly selected men in Sweden, a majority said that they would support their wives or girlfriends if they wanted to donate oocytes in the future (Skoog Svanberg et al., 2003
). Hopefully, there is a tendency for interested potential donors to have partners who do not object to, but rather support the womans decision to become a donor. The staff of the infertility clinic were regarded as the second most important group of people to consult about the donation, emphasizing the need for careful professional counselling at these clinics.
Methodological considerations
In this report, we present data concerning attitudes towards oocyte donation compiled from a large, randomized sample of the Swedish population. The main focus of the investigation was anonymous donation, as this is the preferred way of donating according to the Swedish Councils directive to the infertility clinics. Considering the topic of the present study, we expected a fairly high response rate among women. There were indications of response bias with respect to educational level, place of residence and ethnic background (for instance, there was a large proportion of foreign names among the 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 womens willingness to donate oocytes. The questionnaire was constructed specifically for this survey in order that the questions formulated would be appropriate for the current legal circumstances. The use of non-standardized questions, however, limits the possibilities of validating the questionnaire and the generalizability of the results. The results regarding womens willingness to donate oocytes should be regarded with caution, since one can expect a discrepancy between an individuals report of what they consider doing in the future and how they will actually behave. In the present study, the likelihood of such a discrepancy is increased by the fact that oocyte donation was not yet legalized in Sweden at the time of the survey. For this reason, the study results should be regarded as trends among the Swedish public.
Conclusion
Seventeen percent among a subset of the Swedish population stated that they would consider donating oocytes anonymously in the future. These potential donors had a more positive attitude towards oocyte donation and felt that the genetic link was of little importance. One-third of the potential donors indicated that they would not appreciate it if the child contacted them later in life. Factors that might increase the likelihood of women becoming oocyte donors were talking to women with experience of donating oocytes, proximity to the clinic, having children of their own and accessibility of counselling. In an environment where oocyte donors are probably difficult to recruit, the well-being of the donor is important. Our results suggest that for women who are interested in donating oocytes, the information about consequences of donation and the care provided by the infertility clinic are of great importance. This could have implications for the way in which clinics should develop a programme to attract potential donors.
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Acknowledgements |
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Submitted on April 10, 2003; accepted on June 12, 2003.