1 Family and Child Psychology Research Centre, City University, Northampton Square, London, EC1V 0HB, 3 Assisted Conception Unit, King's College Hospital, London, SE5 9RS, UK and 2 Department of Social Work, University of Canterbury, Christchurch, New Zealand
4 To whom correspondence should be addressed. Email: e.lycett{at}city.ac.uk
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Abstract |
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Key words: children/disclosure/donor insemination
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Introduction |
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In the past, the use of DI as a treatment to overcome male infertility was shrouded in secrecy, with legal positions advocating such concealment. In the UK, for example, until 1977, children born through DI were considered illegitimate and parents had to legally adopt the child (Smart, 1987). Parents were recommended to tell the child that he or she had been adopted rather than conceived through DI (Rowland, 1985
). Clinicians also endorsed the view that it was not necessary to tell the child (Mahlstedt and Greenfield, 1989
). With a policy of secrecy strongly advocated in the past, it is of little surprise that few of those conceived using this technique were aware of their donor origins.
In more recent years, however, many countries have witnessed a change in their legal and policy approach to DI and donor anonymity, in part to encourage disclosure of donor conception information to children. For example, in Sweden, children can have access to identifying information about their genetic father at an age when they are considered sufficiently mature (Frith, 2001). In New Zealand, parents are strongly encouraged to be open with their child and clinics only recruit donors who are willing to be identified by offspring in the future (Daniels et al., 1995
). The state of Victoria in Australia has instituted a recent change in the law whereby children can access identifying information about the donor without his permission (Blood, 1998
), thereby putting control in the hands of offspring as opposed to parents, the donor or the clinic. In The Netherlands (Pennings, 1997
), and in some clinics in the USA (Scheib et al., 2003
), a double track system now operates, giving freedom for parents to choose between donor anonymity or donor identification. In The Netherlands, donor anonymity will soon be removed entirely. In the UK, the practice of DI is regulated by the Human Fertilisation and Embryology Association (HFEA). Although there is currently no mandate obliging parents to tell their child of their donor origins, children born since 1990 can find out whether or not they were conceived through donor gametes at the age of 18 (HFE Act, 1990
). Further, the government recently has announced a change in the law whereby children conceived by donor gametes from April 2005 onwards will be entitled to identifying information about their donor on reaching age 18.
With such widespread change in legislation and clinic policies, and in some cases the lifting of donor anonymity, it may be expected that parents would more frequently disclose donor information to their children (Department of Health, 2001). However, in a comparison of the attitudes of DI parents between 1980 and 1996, van Berkel et al. (1999)
found that parents' level of adherence to non-disclosure of information to the child remained the same over a 16-year period. Moreover, in a study of a representative sample of 111 families with a 4- to 8-year-old child conceived through DI in Spain, Italy, The Netherlands and the UK, not one of the families had told their child of their donor origins, with the majority of parents stating that this information would never be disclosed (Golombok et al., 1996
). A follow-up of this sample
6 years later found that only 8.6% of parents had told their 12-year-old child about their donor conception (Golombok et al., 2002a
). Even in Sweden, where parents are expected to disclose donor origins to their children, Gottlieb et al. (2000)
found that only 11% of parents had told their child although a further 41% intended to tell. Nevertheless, the most recent study of DI parents found a greater reported tendency towards openness, with 46% of DI parents intending to tell their child (Golombok et al., 2004
). The children were just 12 months old, however, and too young to have been told at the time of the study. The findings nonetheless suggest that parents' attitudes towards disclosure may be changing.
It has often been claimed that secrecy about DI will have a deleterious effect on family relationships (Rowland, 1985; McWhinnie, 1986
). Family therapists have argued that if information about a child's donor origins is kept secret, the relationship of trust and honesty, which is so crucial between parent and child, is entirely undermined, endangering openness and communication (Clamar, 1988
). Support for this viewpoint is provided by Turner and Coyle's (2000)
study of adults who discovered their donor conception later in life, often under negative circumstances such as parental divorce or death. An examination of these personal experiences pointed towards feelings of mistrust of family members, distinctiveness from the rest of the family, abandonment by the donor and practitioners, and feelings of frustration and loss regarding the unobtainable donor information. Although these findings may be unrepresentative due to the recruitment of participants through DI support networks, the implications for what could occur if the issue is not dealt with sensitively are highlighted by this investigation.
Children whose parents keep their donor conception secret may be able to pick up on hidden clues from them through facial expressions, tone of voice or changing the subject when the topic of whom the child looks like crops up (Golombok, 2000). Moreover, if other members of the family are aware of the child's DI conception, this information could accidentally be revealed, the impact of which is likely to be more detrimental than had they been told during early childhood (McWhinnie, 1995
). As
50% of DI parents tell a friend or family member about the child's donor conception (Golombok et al., 1999
; Gottlieb et al., 2000
), disclosure by someone other than a parent presents a real possibility. In addition, improved genetic technology increases the possibility of offspring discovering their genetic origins independently of family members or friends (McGee et al., 2001
).
Studies that have examined parental attitudes towards disclosure (e.g. Cook et al., 1995; Nachtigall et al., 1998
; Lindblad et al., 2000
) suggest that the main reason parents decide against openness is to protect the child from either the distress of discovering their father is not genetically related to them or of not being able to access genetic information about the donor. Secondly, parents wish to protect the father either from the child's potential rejection or from the social stigma associated with male infertility. Lastly, parents often feel unsure of how, when and what to tell their child, and therefore may be inclined to avoid discussion altogether.
Due to the small numbers of parents who have already told their child, little is known about UK parents' reasons for, and experiences of, disclosure of DI conception, and, in turn, about the effect disclosure at a young age has on psychological well-being in the long term. However, there is shorter term evidence of children's reactions to the news of their donor origins. Common reactions include curiosity, interest in the story and a desire to know more about the donor (Snowden, 1990; Rumball and Adair, 1999
; Lindblad et al., 2000
; Vanfraussen et al., 2001
). The children in these studies had generally been told as young children and had neutral or curious reactions, but not negative ones. However, Solomon et al. (1996)
have argued that young children below the age of 7 do not possess the cognitive sophistication to fully understand the concept of DI, and therefore neutral reactions would be expected. As the children studied so far have mostly been pre-adolescent, any negative response to the information by the child may not surface until adolescence or adulthood. Rumball and Adair (1999)
have argued that there are advantages in telling children of their origins at a young age because they process the information in a factual, non-emotional context. If the process of encoding this information does not take place under negative circumstances, the child may be less likely to be distressed.
In light of shifting legal, social and professional standpoints in the debate over disclosure of information to the child, the main aim of the present study was to examine thematically the decision-making and disclosure processes of parents with a young DI child. Specifically, the study ascertained parents' preparation of and reasons for (non-)disclosure. In cases where parents had told their child, the process of the disclosure event and subsequent reactions of the children were explored. Families who endorsed openness are compared with those who do not on quantitative measures of their disclosure experience.
Data were obtained from a clinic that endorsed openness with the aim of maximizing the number of children who had already been told about their donor origins. This allowed a comparison of parental attitudes between those inclined towards disclosure (disclosers) and those who do not show an inclination towards disclosure (non-disclosers). Obtaining data from just one clinic meant that the findings were not necessarily representative of all DI families, or an accurate reflection of current disclosure rates. However, this clinic was the only known unit actively to endorse and encourage openesss of DI and was targeted for that reason.
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Subjects and methods |
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At the initial stage of invitation by the clinic, couples who actively refused to participate were asked to provide reasons for doing so. Reasons specified included illness in parents, wanting to maintain privacy because parents had not told the children and a feeling that they could not contribute anything as their child was happy, healthy and well-adjusted.
There were 22 boys and 24 girls in the sample, and the mean age of the child was 6.6 years. The mothers' mean age was 40 years and their partners' mean age was 45 years. The families' demographic information can be found in Table I. Ethical approval was obtained from the Ethics Committees of City University and King's College Hospital, London. Informed consent was obtained from all the families that took part in the study.
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Measures
The interview was standardized in that each of the variables was accompanied by a coding scheme that gave a detailed description of the criteria required for individual rating points on each variable for each parent. The interview was also semi-structured in that it used a flexible approach to questioning that enabled an open-ended but in-depth examination of specific issues surrounding disclosure that had not previously been explored. Data were therefore analysed using quantitative data methods followed by a thematic analysis of parents' attitudes and comments regarding disclosure of DI to the child.
Thematic data
The decision-making process. Specific aspects of the decision-making process were assessed during the interview and the following ratings were made for each family.
Thematic analysis
Parents provided further information from open-ended questioning regarding the following issues.
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Results |
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The families were divided into two groups depending upon their decision regarding disclosure of information to their child. The first group (non-disclosers, n=28) comprised those who were inclined toward non-disclosure and included parents who had decided against telling their child (n=20) and those who were uncertain about telling (n=8). The second group (disclosers, n=18) comprised those who were inclined toward disclosure and included parents who had already told their child of their donor conception (n=6) and those who intended to tell them in the future (n=12). To compare DI children on measures of emotional/behavioural adjustment, Brewaeys et al. (1997) generated a preferring disclosure group by combining the families where parents intended to disclose with those who had already told. Similarly, in the study of Nachtigall et al. (1997)
, parents who were intending to tell their child formed a composite group with those who had already told. In the present study, those who were uncertain about disclosure were combined with those opting for non-disclosure because they did not express strong feelings in favour of openness and disclosure as the former groups had done. There were no significant differences between the disclosers and non-disclosers based on demographic characteristics, with the exception of length of marriage and the presence of siblings (see Table I).
For 82% of families who had reached a decision regarding disclosure (n=38), a joint parental decision had been made as opposed to one parent making a (semi)- autonomous decision. There was no significant difference between the disclosers and the non-disclosers, 2=4.00, NS. Nine percent (n=4) had involved other friends or family members in their decision-making process,
2=0.27, NS. Of the 38 families who had made a decision regarding disclosure (i.e. with eight uncertain families excluded), 74% (n=28) reported no difficulties in reaching their decision, whilst 26% (n=10) reported minor difficulties. Of the 20 families not intending to tell their child, 70% (n=14) reported having no concerns about their decision whilst 25% (n=5) reported having minor concerns about their decision not to tell. Such concerns included feelings of guilt about not being fully open about the child's genetic origins and of the child accidentally discovering their donor conception, possibly leading to the child's subsequent distrust of their parents. One family had moderate concerns about their decision following suspected inadvertent disclosure of DI information by health professionals, thus leading to the parents' fear of accidental discovery. An analysis of variance (ANOVA) revealed no significant difference between the groups for difficulty in decision making, F(1,37)=2.54, NS, or for parents' discussion about disclosure with each other, F(1,37)=0.72, NS.
Reasons for inclination towards disclosure
With respect to the disclosing group (n=18), the six families who had already disclosed the DI conception and the further 12 who intended to tell their child in the future outlined the reasons for their decision (see Table II). The two main reasons for favouring disclosure were (i) to avoid accidental discovery (88%) and (ii) a desire for openness and honesty (88%). Fifty-five percent of parents (n=11) cited both these reasons for their final decision regarding disclosure.
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The second main reason for parents' decision to tell their child about the DI conception was to avoid keeping secrets or lying to the child and a desire to be honest and open with their child. Other parents reported the reason for being open was to avoid being dishonest with their child. Almost half the couples wanted to disclose the DI conception because they believed that the child has an exclusive right to know about the nature of his or her genetic origins.
Reasons for inclination towards non-disclosure
Regarding the non-disclosing group (n=28), the two main reasons for favouring non-disclosure were (i) that there was no reason to tell the child (61%) and (ii) to protect one or more family member(s) (66%) (see Table III). Parents reported that there was no need for the child to know the details of their conception because such information was not an important issue, was a personal matter between the couple or that the family felt normal and saw no point in disclosure.
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Parents who intend to disclose
Data were analysed from the 12 sets of parents in the disclosing group who intended to disclose but had not yet done so, about their expectations of their child's reaction, the age at which they planned to disclose the information, and the approach to telling that they planned to endorse.
The expectations that parents have of telling their child in the future are characterized by a diversity of positive feelings, curiosity and indifference. Many parents found it difficult to decide when to tell their child about the DI. Though the majority of parents (n=8) had decided to disclose their child's donor origins between the ages of 7 and 11, and two at age 18, the remainder reported they would tell their child when he or she asks about spontaneous natural conception. Many parents discussed the uncertainty about how they might broach the subject of DI with their child. These thematic data can be found in Table IV.
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Two children had initially been told at age 3, three children at age 4 and one child at age 5. Thus, all had been told before school age. In three families, it had been the mother who had initiated the process, in two families, it had been the father and in one family, both parents had been involved. Subsequently, between one and four further discussions about DI with the child had taken place. Each family spoke about how they first told their child. These approaches can be found in Table V.
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Discussion |
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Those parents who were inclined towards disclosure attributed their reasons to two main areas: the avoidance of accidental discovery and a desire for openness and honesty. The largest proportion of parents in favour of disclosure were fearful of accidental discovery by the child through medical and technological advances that have occurred in recent years such as genetic testing and matching which is becoming more commonplace and widely understood (McGee et al., 2001). Compared with parents from earlier studies, these couples may be more aware of scientific advances and realize that in future years, the child's donor conception may be disclosed by routine medical procedures rather than the parents themselves. Accidental discovery in this way is believed to pose more of a threat to the parentchild relationship than the child's negative reaction to the concept of DI conception. In fact, most of the disclosing parents believed their child would not react negatively to such knowledge and were confident that the issues would be dealt with in a positive way, particularly if discussions began at an early age. Parents also feared that their child would discover their donor origins through disclosure by friends and family who were aware of their conception and preferred to tackle the issue of disclosure themselves to lessen the psychological distress that accidental discovery could have on the child.
The second reason for disclosing the donor conception to the child was a desire to be open and honest with their child. These parents fully appreciated the damage that secrets and lies could impose on the child, should they ever discover their donor conception in the future. Other parents wished to disclose for the fundamental reason that the child had every right to the knowledge of their donor origins, particularly if other family members and friends had been told. Parents believed that the ownership of the conception is wholly the child's, and they have no right to withhold that information.
Of interest, however, was the wariness of parents, particularly of fathers, of their child's potential interest in the donor. It seems that the donor posed a threat to some fathers in terms of how the child may react to the knowledge that a third party was involved. Some fathers had strong concerns that the relationship with their child may be compromised by the knowledge about a different biological father. Other fathers were worried about the effect on the child's identity development of not having access to identifying information about the donor.
The couples who had already disclosed the donor conception to the child had generally found the experience to be a positive one. Some parents drew on the help and resources available to them, whilst others approached the process in a less structured, ad lib manner. Whichever way the child had been told of their donor origins, the information was met with either curiosity or disinterest. The finding that some children are curious about the donor and their relationship to him is in line with those findings of Vanfraussen et al. (2001), and may be a reflection of the parents' openness about a real person' that was involved in the child's conception. For those exhibiting disinterest, it may be the case, as Solomon et al. (1996)
argued, that the children simply did not understand what was being explained to them. Conversely, other parents did describe their child's curiosity and coherent questions about the donor, demonstrating some understanding of the concept even at a young age. This may be a function of how frequently the parents and child had discussed the issue subsequent to the initial discussion.
The reasons cited by parents who were not inclined towards disclosure of the donor conception were categorized into two main areas. The most common was that parents did not feel the donor conception had any bearing on the parents' or child's life and therefore there was no need to tell the child. Many of these non-disclosing parents reported that they never thought about the donor, or the fact that their child was conceived using donor sperm. Moreover, some parents had convinced themselves that the child may have been the result of a natural, spontaneous conception. Indeed, the fact that the mother carried the child through pregnancy and the father was named on the birth certificate further enabled parents to keep their DI treatment private. Parents did not place a great deal of importance on the reality that conception occurred using donated sperm, and this appeared to have an impact on the importance they attached to making the child aware of their donor origins.
The second most common reason for non-disclosure lay in the fear that telling a child about his/her donor origins may have a negative impact on the child's well-being. Many parents were concerned that their child would be upset and shocked by the knowledge that their father was not genetically related to them. This finding reflects those of earlier studies (e.g. Cook et al., 1995) that the worry of their child's negative response was a main reason for deciding against disclosure. Parents feared that disclosure may lead to the child being ostracized by other adults and children or, at such a young age, may confuse the child in some way. Many parents highlighted the lack of information available about how disclosure to children may be beneficial. Instead, they referred to anecdotes about adoption from friends and family, which suggested that disclosure may be upsetting for children. Not surprisingly, these parents do not want to risk any kind of potential upset within their family. This lends support to the findings of earlier studies (Cook et al., 1995
; Lindblad et al., 2000
) that parents do not disclose donor origins to the child due to a fear of a detrimental effect on the child.
Many parents also feared the negative impact that disclosure may have on the fatherchild relationship, a finding which mirrored that of earlier studies (Nachtigall et al., 1997). Both mothers and fathers strongly believed that the father's status as a parent could be undermined if the child reacted negatively to the knowledge of their donor origins. Further, parents felt that such damage to the relationship would lead to an increasing interest in the donor and the unobtainable search for the real father. This fear was also reflected in parents' attitudes towards the current legal position allowing adults access to donor conception information at the age of 18, with non-disclosing mothers and fathers significantly more opposed to the legislation.
Interestingly, the finding documented by Nachtigall et al. (1997) and Lindblad et al. (2000)
, amongst others, that parents are opposed to disclosure because they feared other people discovering the father's infertility, was not a reason explicitly given by the current set of parents. Although the nature of the fathers' infertility was, at times, discussed in the context of DI as a whole, neither mothers nor fathers specifically referred to the fear of social stigma surrounding DI as a motivating factor in deciding not to disclose. The reasons given by parents in the current investigation focused much more upon the child's well-being or the fatherchild relationship rather than on how the father would be perceived by other people in terms of his virility or masculinity.
In terms of the significant demographic differences between disclosers and non-disclosers, the study revealed that in families where there were two or more siblings, parents were less inclined to disclose the DI conception to their child. It could be the case that couples who had an older child already had made a decision not to disclose information to that child in a climate where disclosure was not necessarily encouraged. Following the birth of a second child, despite a change in disclosure climate, parents may have altered their viewpoint, but, to maintain consistency, chose not to disclose information to either child. Likewise, couples who had been cohabiting or married for a longer period may have made a decision in a non-disclosing climate long before the birth of their child not to disclose.
A limitation of this study is the difficulty in making generalizations from the small sample about the approaches to disclosure of parents who have already told their child about their conception. This is unavoidable given the low rates of disclosure by parents in the UK. It may have been possible to recruit parents from DI consumer support groups who were more likely to have told, enabling an examination of a wider range of experiences of telling, particularly in older age groups. However, this sample would not have been representative of the DI population as a whole. In addition, having made composite groups of those intending to disclose and those who have already disclosed, caution must be exercised in interpreting the quantitative data, particularly with small sample sizes. However, by complementary thematic analysis of the data, it is possible to examine specific decision and disclosure processes of the families independently.
It will be of particular interest to know what proportion of these parents who intend to tell their child of their donor origins actually follow through with their intentions at the age they plan to disclose. Golombok et al. (2002b) found that in a European follow-up of DI children first studied at age 48 years whose parents had definitely intended to disclose, nearly one-third of the parents had still to do so by the time the child had reached early adolescence. These findings demonstrate that intention is not necessarily followed by practice. In addition, the fact that the couples in this study received treatment from a clinic endorsing and encouraging openness seems to have had very little impact on the majority of parents when considering the issue of disclosure to the child. The data obtained will certainly have practical implications for clinics, for example, in the provision of counselling both pre-treatment and longer term post-treatment. This may be particularly valuable for parents who are unsure about how and when to inform their children and about the possible outcomes and reactions they may face.
The present study was conducted with parents who had made a decision about whether or not to disclose their child's genetic origins, under the legislation currently in place, i.e. children conceived through donor gametes cannot access identifying information about their donor. New legislation, which will be in force from April 2005, will allow children born after this date to access the donor's identity on reaching adulthood. The implications of this legislation could mean that a greater proportion of parents will be encouraged to disclose the donor conception to their child, as has been the case in Sweden (Milson and Bergman, 1981; Gottlieb et al., 2000
). However, it remains to be seen how the new legislation will affect parental attitudes towards disclosure in the years to come.
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Acknowledgements |
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References |
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Submitted on April 13, 2004; resubmitted on July 30, 2004; accepted on December 2, 2004.