Petra Nordqvist (University of Manchester)
We tell our children it’s wrong to lie but, not so long ago, parents starting a family using donor sperm or eggs were advised to keep it a secret and get on with family life ‘as usual’. Doctors reasoned that this ‘white lie’ was worth it because telling the child they were donor-conceived might make them feel different, or put them at risk of bullying.
There has, however, been a policy shift towards openness in recent years, with parents now advised to tell their children about their genetic background at an early age. Given that toddlers are not known for their discretion, this means sharing the information more widely as well. There are two main ideas behind the move towards openness: first, that family secrets are inherently damaging, and secondly that children have a right to know their genetic background (1). It seems though that parents of donor-conceived children less convinced about the idea of openness than the policymakers and campaigners, with various studies finding that up to half do not plan to tell their children about the donor sperm/eggs (2).
In research, with Carol Smart, which explored the experiences of parents and grandparents of donor-conceived children all the parents we spoke to planned to follow policy recommendations and tell their children they were donor-conceived. But putting policy into practice was not necessarily straightforward, and we can learn something about why other parents might resist being open from the stories of parents who do tell.
Parents told us about the practical challenges of telling young children, of managing different family members’ feelings about openness and of working out how to make sense of family life when genetic relationships do not map neatly onto social relationships. By looking at these stories some of the real life difficulties that openness presents can be shown. If we really want greater openness about donor conception, we all need to put in a bit of the legwork, rather than putting all the pressure on parents not to keep secrets.
Telling young children they are conceived using donor sperm or eggs
Parents in our research wanted to be open because it felt the ‘right thing to do’. They also wanted to avoid their children finding out they were donor-conceived as adults and being shocked by it. Finally, most parents echoed the popular belief that genetic information is somehow special and key to our personal identity. But parents also had misgivings about openness. They worried that openness might expose the child or family to discrimination or rejection. Another concern was that openness would lead to a loss of control over personal information. One of the challenges faced by parents telling children they are donor-conceived was simply finding the words to explain donor conception. Describing the biological and emotional processes involved is difficult enough, but doing it in words that a three year old can appreciate is a test of anybody’s communication skills. (Try it!)
Telling young children could feel like letting the genie out of the bottle. One mum told us a story about her toddler suddenly introducing the topic of infertility and donor conception in a vet’s waiting room. Being open with toddlers often did mean losing control over private information and it could feel risky for parents. Sometimes telling young children could force a particularly difficult openness onto families, especially when it involved sharing stories of infertility. One father had a son using donated sperm. He loved his son very much and yet felt a lasting sadness that he wasn’t his genetic parent. For him, openness about donor conception meant turning deeply private information into public property.
Some parents were also concerned that young children might be very open and tell lots of people they were donor conceived, and then wish they had kept it more private when they were old enough to understand the significance of the information. This was the main explanation parents gave us for delaying telling children until they were a bit older. These parents saw themselves as guardians of the information, protecting it safely until the child was old enough to truly ‘own’ it themselves.
Telling others about donor conception
As explained above, being open with children about donor conception means taking into account communicating with family, friends and others such as teachers and doctors. This could be as fraught with moral dilemmas and practical challenges as telling children. People are not always as tolerant and accepting of difference as might be hoped. Again, when parents in our research resisted openness, they were trying to protect children from being treated differently or rejected by family or wider community. Parents who were part of religious communities opposed to donor conception often chose to keep the fact that their child was donor-conceived a secret, or private to a few people, to allow their child to play a full part in their community.
In our research, we also talked to grandparents of donor-conceived children as grandparents are so important for many families. Sometimes parents worried that grandparents might love donor-conceived grandchildren less, or treat them differently to other grandchildren. A few grandparents disagreed with the principle of donor conception. But in practice, most of the grandparents loved all their grandchildren, regardless of how they were conceived. Like parents, grandparents did still feel ripples of tension to do with donor conception. Again, the two main concerns were that children wouldn’t feel part of the family and that they might be bullied. Whereas parents wanted to be open about donor conception to make it a normal part of everyday life, grandparents were more likely to want to keep it a secret from the rest of the family to protect the child. This could lead to situations where parents wanted to be open about donor conception, but felt pressure from grandparents not to share the information. In these families, parents had to weigh the benefits of openness against upsetting grandparents, which might damage the child’s relationships with important family members. Sadly, in a few families, parents’ fears about discrimination were realised and grandparents did treat grandchildren differently depending on whether or not they had a genetic link.
Ethical dilemmas for donor conception families
Donor conception presents us with dilemmas which test the powers of philosophers, bioethicists, and high court judges alike, so the ethical puzzles faced by parents should not be underestimated.
If you have the luxury of a genetic connection to your children, or parents, then the nature/nurture debate is an abstract problem. If your children are not – genetically – ‘your’ children, the question feels very different. Will your child love you less if you don’t have a genetic connection? Are non-genetic parent-child relationships more breakable? Even parents who feel strongly that openness about donor conception is morally right worried that telling children could jeopardise their relationship with their non-genetic parent. These fears tend to get smaller as the children get bigger, so for most parents who talk to their children about their genetic background they are not a big part of family life. But it is important to note that they do not disappear completely, and for some families they can be a lasting worry. Another ethical balancing act for parents is how to explain the relationship between the child’s social family, and their genetic relations via the donor. If knowing our genetic background is important for our sense of personal identity how far does this go? Does the donor count as family? What about genetic half-siblings? This isn’t just a matter of who makes the Christmas card list but of who can claim a relationship with your child. Working through these ethical dilemmas is a challenge, even for parents who are strongly committed to being open about donor conception.
Moving towards openness?
Even when openness is the best policy, it is not always easy to put it into practice. In real life, parents are not making a choice between being honest or telling lies. Instead, they are often balancing a desire to be open with fears that openness will lead to a lack of privacy, or to discrimination. If we are really serious about openness we need to build a society that facilitates it, rather than putting all the responsibility on parents to be open. As a society, we need to recognise that warm, loving and valid relationships are not necessarily based on genetic relationships. We need to move away from the idea that a man who is infertile is not ‘a real man’ or that a woman who is not genetically related to her children is not their ‘real mother’. We need more support for donor conception families from health professionals, including midwives, health visitors and doctors. We need the legal system to catch up with modern family formations. We need schools to talk about donor conception, not just in terms of genetic diagrams, but what it means for family life. Perhaps we even need a Coronation Street storyline about donor conception. In short, we need a society that is as happy to be open and honest about donor conception as we expect parents to be. At the moment, donor conception feels different and strange to many people. By making these changes we could help it become just what it is for families with donor-conceived children: part of everyday life. When we get to that stage, openness will be a much easier choice.
References:
(1) See, for example, the Human Fertilisation and Embryology Authority (HFEA) website
(2) It is understandably hard to find evidence about the numbers of parents who do not plan to tell children they are donor-conceived. In the UK, various studies with parents of donor-conceived children suggest that perhaps 40-60% do not plan to tell children about their genetic background – see for example, MacCallum (2009), Lycett et al (2005), and MacCallum and Keeley (2012). Similar research in Sweden, which has a longer history of donor identity release than the UK, paints a similar picture.
Further reading:
Petra Nordqvist and Carol Smart (2014) Relative Strangers: Family life, genes and donor conception.
Free leaflets and videos for families with donor-conceived children.
Petra Nordqvist is a lecturer in Sociology at the University of Manchester. This blog post is based on an ESRC-funded project, Relative Strangers, which studied the experiences of parents and grandparents of children created using donor eggs or sperm. The research was carried out by Petra Nordqvist and Carol Smart. The article is based on Nordqvist, P. (2014) ‘The Drive for Openness in Donor Conception: Disclosure and the Trouble with Real Life’ International Journal of Law, Policy and The Family, 28, 321-338 and was written by Hazel Burke, Communications and Development Manager.
Image Credit: Jacob Bøtter (CC BY 2.0)