Two studies in Human Reproduction today* (Thursday 31 August) highlight concerns surrounding children conceived through donor insemination (DI) and raise issues for countries considering legislation on a child's 'right to know'.
A Swedish survey found that at the time of questioning only half of parents were complying with their country's laws by telling or intending to tell their child about its biological origins, yet many who had not told had spoken freely to others, putting their child at risk of hearing from other sources.
British researchers found from a smaller in-depth study of 16 adults conceived by DI that they faced problems of personal identity, feelings of abandonment, deceit and mistrust within the family and frustration in being thwarted in their search for their biological father.
The Swedish study
In 1985 Swedish law gave a child born by DI the right 'when sufficiently mature' to be told the donor's identity. Until then medical files on donors were routinely destroyed and parents encouraged not to tell the child or anyone else. The change in the law arose from findings on the welfare of adopted children and their wishes to know their biological roots.
A total of 148 couples who had conceived through DI via the Umeå or Karolinska Hospitals between the time the new law was introduced and 1997 answered questionnaires anonymously.
Of these, nearly 90% (132 couples) said they had not told their children. Of 105 couples who commented on their answer, 61 said they intended to tell their children later, 16 had made no decision and 28 said they did not intend to say anything.
Nearly 60% of the 132 couples had told someone else and half of those had told many people. Parents who had told their children were satisfied with their decision and said they had seen no negative effects to date.
One of the research leaders, Dr Claes Gottlieb of the Sophiahemmet and Karolinksa Hospitals in Stockholm, said: "Attitudes towards informing the child seem to be changing with more parents having told their child in the years 1992-1997 than having told children born in the earlier period (1986-1992). Even so, as only 52% of the parents we studied had told or intended to tell their child, compliance with the legislation is low although we know from other research that parents' willingness in Sweden to tell children is high from an international perspective. This may be because in Sweden it is possible to find out identifying information about the donor.
"Our study suggests that legislation alone is not sufficient to change personal attitudes in a population and that discussion on the ethics of telling, or not telling, is vital among responsible professional groups. The findings highlight the risk of children who have not been informed by their parents, being told by others. That is a major concern which must be addressed."
The UK study
The absence of research on the effects of DI on the children when they grew up prompted Surrey University psychologists to recruit 16 individuals (3 men and 13 women) who had found out about their conception by DI. The researchers used structured questionnaires to discover what effect it had on their lives. The aim was to establish how best to meet counselling needs of individuals born through DI.
The interviewees were recruited via donor insemination support networks in the UK, USA, Canada and Australia - all countries where children have no legal right to know the identity of the donor. None of the participants had discovered that they were DI babies until they were adult.
"Although there was little in common about the time, the place or the way that the participants learned of their background, many reported feeling shocked," said Counselling Psychologist Amanda Turner.
"It was clear that some felt their whole identity was threatened. One woman said she felt that her entire life was based on a lie and was furious with her mother for dying with this secret. The right to know their genetic origin was a common theme with all but one of the participants and many had recourse to fantasy about their donor fathers as a coping strategy."
But although the information was a shock, most reflected that at some level they were aware that something within their families was not right and one described how she always felt as if she didn't belong and searched for evidence of adoption as a child. For another, who described her father as 'a creep', the knowledge that she was not genetically related was actually a relief.
All 16 had made initial inquiries about searching for their donor 'fathers'. The inability to find out caused a sense of loss and several expressed it in terms of feeling unwanted or merely part of a medical procedure. One queried that if DI was an honourable way to conceive, why should the person be involved be afforded anonymity when every other act of reproduction entailed responsibility to the child created?
They also felt their need to search was not recognised. Even the one person who saw DI in a positive light said he was "disappointed because I shall never never know."
Many found it difficult to talk about their background and felt others would be judgemental and unsympathetic, yet most expressed a need to talk.
Ms Turner said that recruitment through support networks may have led to bias towards participants who needed to resolve identity issues and there may have been sharing of ideas within networks - 13 out of 16 participants lived in North America. Nevertheless, the study had provided tentative insights into the identity experiences of donor offspring and implications for counselling.
"A consistent finding was the negative and ongoing effects of keeping secrets. This supports research that suggests that secrecy in families is damaging and that children pick up hidden clues.
"It was also clear that these donor offspring perceived a sense of abandonment of responsibility by their donor fathers and the medical profession. They expressed a need and a right to know who their donor fathers are and, if possible, to have some sort of relationship with them. It seems that for these donor offspring 'non identifying' information might not be sufficient to meet their needs."
*Disclosure of donor insemination to the child: the impact of Swedish legislation on couples' attitudes. Human Reproduction. Claes Gottlieb et al. Vol 15. No 9. pp 2052-2056 *What does it mean to be a donor offspring? The identity experiences of adults conceived by donor insemination and the implications for counselling and therapy. A.J. Turner & A. Coyle. Vol 15. No 9. pp 2041-2051
Sweden was the first country in the world to regulate DI by law (1985). Austria (1992) and Victoria, Australia (1995) have similar legislation. Norway adopted a law which makes donors anonymous. UK stores identifying information with the Human Fertilisation and Embryology Authority but only non-identifying information may be disclosed to the child USA and Spain - anonymity can be abolished if a court decides it is in the interest of the child
Notes:
1. Human Reproduction is a monthly journal of the European Society of Human Reproduction and Embryology. Please acknowledge Human Reproduction as a source. 2. Printed text of both research papers available on request from Dr Helen Beard, Managing Editor. Tel: +44 (0) 1954 212404 or email: gb54@dial.pipex.com or Margaret Willson.
Contact: Margaret Willson (media relations officer) Tel: +44 (0)1536 772181 Fax: +44 (0)1536 772191 Mobile: 0973 853347
Journal
Human Reproduction