Department of Gynaecology and Reproductive Medicine, Leiden University Medical Center, Post Box 9600, 2300 RC Leiden, The Netherlands
1 To whom correspondence should be addressed. Email: a.m.a.brewaeys{at}lumc.nl
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Abstract |
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Key words: anonymity/disclosure/donor insemination/identity-registered/sperm donors
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Introduction |
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However, legislation imposing identity release donors has little impact as long as the parents concerned do not intend to inform their child about their conception method (Pennings, 2001). Studies carried out in the past 20 years were unanimous: the majority of parents remained secretive about DI and their children were unaware of their DI origin (Nachtigall et al., 1998
; Gottlieb et al., 2000
; Brewaeys, 2001
; Golombok et al., 2002
). More recently however, a number of studies reported a growing number of DI parents intending to disclose the donor origin to their child and parents who intended to inform their child were more in favour of identifying donor information (Adair and Purdie, 1996
; Rumbal and Adair, 1999
; Hunter et al., 2000
; Scheib et al., 2000
; Lycett et al., 2004
).
Undoubtedly, parental attitudes about the role of the donor within their family will influence their children's donor concept and their future need for donor information.
As few candidate parents were offered the choice between either an anonymous or identifiable donor in the past, little is known about their own donor preferences.
The aim of the present study was to gain insight into parents' own donor choices and motives within a system where they had the freedom to choose. The double track system was introduced at the Fertility Centre of the Leiden University Hospital in 1994. In this system, applying couples had the choice between an anonymous donor (AD) and an identity-registered donor (ID). By choosing for the latter, both non-identifying and identifying donor information would become available for donor offspring once reached the age of 16 years.
Donor choices and motives were investigated by focusing on the following questions: (i) what was the number of AD and ID choosers and which motives determined their final choice? (ii) What was the relationship between donor choice and the intention (not) to inform offspring? (iii) Were there any relevant differences between AD choosers and ID choosers with regard to their sexual orientation, their demographic characteristics such as age, religion, educational level and ethnicity, and the perceived male infertility distress?
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Materials and methods |
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Methods
In the clinic, DI treatment is based on a written protocol including the following topics: (i) the inclusion criteria concerning the age, the partner status and the general health of the recipients; (ii) an implication counselling programme which offers participants the choice between an anonymous and identifiable sperm donor; (iii) donor screening and donor matching procedures; and (iv) treatment procedures. All recipients were counselled in two to five 1 h sessions before starting treatment. Information was first provided about all aspects of the clinics' DI protocol. Then the following topics were discussed: (i) consequences and risks of secrecy/disclosure towards child and others; (ii) consequences and risks of choosing an anonymous/identity release donor; (iii) issues to be considered when raising a DI child.
All 105 recipients of the study group followed this counselling programme. Although no a priori advice was provided about the donor choice, 16% (n=10) of the heterosexual candidate parents changed their initial choice from an anonymous to an ID donor. The data presented here were those of their final choice. As there was no shortage of ID donors, waiting lists for both donor types were equal and did not influence final choices.
Data for this study were collected during the counselling sessions with both partners. The first author conducted all sessions. Data concerning the following topics were registered on a standardized form: demographic features, donor choices and disclosure issues, alternative options for realizing the child project. For the group of heterosexual couples, a self-developed rating scale was used to measure the observed distress of the male partner with regard to his infertility: (i) minor was rated when the male partner went through an initial period of grief emotions after the diagnosis but had recovered by the time of the interview/when he could communicate with his partner and significant others about the problem; (ii) moderate was rated when the male partner went through an initial period of intense grief emotions and when certain negative feelings were still present during the interview/when he felt uncomfortable talking about his problem to his partner and significant others; (iii) major was rated when negative feelings (depression, anger, shame, anxiety) about his infertility were still observed during the interview/when communication between partners was difficult and he did not want his partner or himself to talk with significant others. No reliability or validity tests were performed. These data were collected as part of a first measurement in a longitudinal follow-up study. Since the majority of data were of nominal/ordinal level, non-parametric statistics were performed by means of SPSS 11.00; all significance levels are two-tailed.
Data about candidate parents' donor choices and motives were analysed qualitatively. Choices for an anonymous (AD) or identity-registered (ID) donor were registered at the start of the first counselling session. The questions investigating underlying motives were open-ended and the answers were transcribed. During the last counselling session, donor choices and motives were questioned in a similar way and again transcribed in order to detect potential changes as a result of the information provided by the counsellor. If differences did exist (16% of the heterosexual couples), only the final decision and underlying motives were reported. In the qualitative analysis of the transcripts, we first looked for the recurrent themes in the reported motives. Then we searched for relevant variations and divergences among the respondents' answers (Barker et al., 1994).
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Results |
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Motives for choosing an identifiable donor did not differ between heterosexual and lesbian couples. The great majority pointed to the right of the child to know its genetic origins. However, recipients differed in the importance attached to identifying donor information. For some, DI would not have been an option if only anonymous donors were available. For others, anonymity would have been a second best choice. All couples realized that their interests differed from their child's. Although the majority of future parents expressed the wish not to become involved with the donor, they decided that it was not for them to block the child's access to donor information. Realizing that their child would grow up in a country where the majority of DI children would have access to donor information also influenced some parents' decisions. Also of importance was the possibility of obtaining access to the donor's medical records.
More lesbian (80%) than heterosexual couples (18%) had previously searched for a known donor between family and friends. Arguments in favour of a known donor were the opportunity to choose themselves the donor that fitted best into their lives and the possibility of revealing the donor's identity before the child had reached the age of 16 years. Divergent views concerning the donor's future parental role were the main reasons for not continuing with this option.
The major motive of the (heterosexual) candidate parents choosing an anonymous donor was fear of interference from an unknown party within their family life. The wish to become a normal family, just like anyone else, was frequently mentioned. More men than women pointed to the donor as a potential threat. Men were anxious that knowing the donor would negatively influence the child's love for them as social fathers. A minority believed that knowing the donor's identity would not improve the child's well-being and could even be harmful.
Differences between AD choosers and ID choosers
A comparison between couples choosing for an anonymous or identity release donor is only relevant for the group of heterosexual couples since all but one lesbian couple belonged to the group of ID choosers. In what follows, the group of heterosexual couples will be considered (Table II).
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Both groups appeared to be careful when talking about DI to others; only 12% of the AD choosers and 25% of the ID choosers had informed many people. More AD choosers told no one (63%) compared with ID choosers (27%) (2=7.621, P<0.001). However, among those who intended to keep the donor origin secret from the child, or had not yet decided, 36% had told a few people.
Alternative options
Did both groups differ in their (previous and future) efforts to find alternative options for realizing their child project? Of the ID choosers, 49% had considered either adoption or a known donor whereas only 12% of the AD choosers had done so (2=8.786, P<0.02) (Table II).
Male infertility distress
Did men of both groups differ in the observed distress with regard to their fertility problem? Male distress scores in the group of AD choosers were significantly higher than in the group of ID choosers (KruskalWallis, 2=10.007, P<0.001). In the former group, 12% of the men had a distress score minor, 33% moderate and 55% major. In the group of ID choosers, 36% had a distress score minor, 49% moderate and 15% major.
Demographics
Did AD choosers differ from ID choosers with regard to the following demographic variables: age of biological mother, highest educational level, religious affiliation and ethnicity of significant differences were only found for educational level (2=15.533, P<0.001). The majority of AD choosers (73%) had an educational qualification lower than secondary level whereas this was the case for 30% of ID choosers. Half (48%) of the ID choosers received at least one form of higher education/university degree whereas only 9% of the AD choosers did so.
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Discussion |
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In our population, lesbians outnumbered heterosexual recipients in their choice for an identifiable donor. Obviously, the absence of a male infertile partner spares them the stigma of infertility and, as there is no way to hide the use of a sperm donor, their children will be informed in an early developmental stage.
The great majority of the ID choosers, regardless of their sexual orientation, believed that the child had the right to know his/her genetic origins, although having access to the donor's medical records was also considered as a pro. Awareness of public opinion, demonstrated in carefully watched television programmes, and of upcoming legislation seemed also to have influenced their final choice. Despite the recognition of different interests between themselves (no interference) and their offspring (access to information), the child's well-being seemed to prevail. The heterosexual couples who chose an anonymous donor were mainly concerned with protecting the infertile husband and being a normal family. It appeared as if their own fears restricted them to the adult perspective. If the child's perspective were to be considered, they believed that the donor offspring was better off not knowing. Similar differences in the motives of AD and ID choosers were reported in the study by Scheib et al. (2000).
A striking parallel between donor choices and disclosure issues was identified. The great majority of ID choosers, regardless of their sexual orientation, intended to inform their child whereas only 17% of the AD choosers would do so. Although the majority of parents in this study had the intention of informing their child, it remains to be seen whether they will actually do so. A number of authors point to the fact that there are no accepted tales available yet which might help DI parents to tell their children a comprehensive birth story (Cook et al., 1995; Rumbal and Adair, 1999
; Kirkland, 2003). Moreover, concerns about the impact of telling on the child and on the fatherchild relationship were frequently mentioned. This was also the case for parents who had already told or intended to do so in the near future (Hunter et al., 2000
).
Our findings concerning the heterosexual couples identified a number of important differences between those opting for an anonymous and identifiable donor. A choice for an anonymous donor was associated with a low socioeconomic status (79% lower than secondary level education), difficulties of coping with the male infertility (55% of the men: major distress) and secrecy towards the child (83% no disclosure). Alternative options such as adoption or using a known donor were only considered by 12% of these recipients. This contrasts sharply with the overall picture of the ID choosers. The majority was socioeconomically privileged (48% at least higher education), men dealt better with their fertility problem (only 15%: major distress) and secrecy towards their child was no option. Almost half of them had considered adoption or a known donor as an alternative for DI.
Another study investigating possible differences between English DI couples who intended to disclose and couples who did not, observed a comparable divergence between groups (Salter-Ling et al., 2001). Couples choosing for secrecy were more distressed about their infertility and had a lower educational level than those choosing for disclosure.
Undoubtedly, the associations found between donor choices, educational level and infertility distress are intriguing. We believe that these associations are strongly influenced by the sociocultural environment of the couples involved. AD choosers live more often in a lower socioeconomic context where other family values prevail. Male infertility and non-genetic parenthood remains more of a taboo whereas childlessness is less accepted. Such values might have influenced the high infertility distress observed in most of the men and the decision not to disclose DI. However, the current study design does not allow firm conclusions yet. Further research with more sophisticated measures is needed to disentangle the complex relationships between potential social stigmatization, well-being and donor choices.
Little is known about the impact of parental donor choices on children's development. Comparative studies investigating family functioning and child development between DI and naturally conceived families failed to find any relevant difference (Golombok et al., 1996, 2002
). As the great majority of the DI parents involved had not informed the child, there was no indication so far that secrecy affected the child negatively. A recent study comparing family relationships and child development between DI families who did and did not intend to disclose, revealed divergent findings. Disclosing parents viewed themselves as more competent. They had fewer severe arguments with their children and reported fewer conduct problems (Lycett et al., 2004
). Nachtigall et al. (1997)
did not find such a difference in family functioning between disclosing and non-disclosing DI parents. However, a negative association was reported between the father's experienced infertility distress and the quality of his relationship with his child. What can we learn from all these findings? Obviously, there is no reason to believe that parental openness (and consequently their need for identifying donor information) produces better parentchild relationships as such. An alternative explanation is that donor choices are influenced by more general parental characteristics, such as coping strategies, overall well-being and potential parental skills. Such characteristics are believed to predict future family functioning and child outcome.
In conclusion, anticipating a DI practice where only identity-release donors will be available, what can we learn from this study? The distinct differences between AD and ID choosers suggest that not all recipients will fare well under the new legislation. For ID choosers, consisting of lesbian mothers and a pioneering group of more privileged heterosexual parents, the new regulations fulfil their needs. AD choosers appear to be a more vulnerable group and adaptation to an open system is not self-evident. A compulsory choice for an identifiable donor does not change individual motives and might even lead to more secrecy and family isolation (Pennings, 1997). Since the child's well-being is strongly influenced by quality of the family relationships, DI parents' concerns and fears must be taken seriously.
First of all there is a need for professional counselling protocols. Pre-treatment counselling should focus on individual motives and cognitions rather than provide a priori advice. In this regard, helping DI families to cope more adequately with (sometimes internalized) social stigmatization might have an empowering effect. DI parents should also receive the opportunity to discuss DI matters with a professional after the birth of their children. Disclosure issues come to the fore in several stages of family development and different questions arise according to the child's age. Secondly, the development of public campaigns preventing further stigmatization of male infertility is another tool to influence prevailing values. Increased social tolerance could positively influence future parents' openness about DI. Finally, as it appears that attitudes about the role of a sperm donor within a family change quickly during this transition period, there is a need for continuing objective information. Large-scale follow-up studies, investigating DI parents' and children's own choices and concerns, should receive the highest priority.
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References |
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Submitted on October 12, 2004; resubmitted on November 25, 2004; accepted on December 2, 2004.