28 May 2014
ByAppeared in BioNews 755
Since 1991, more than 35,000 children have been born in the UK as a result of donor conception, and our knowledge of genetics has increased substantially during that time. The event 'Do Genes Matter? Families and Donor Conception' set out to ask whether our understanding of family has changed too, and if so then how our perceptions of being a parent, grandparent or donor-conceived child have evolved.
Natalie Gamble, a solicitor specialising in fertility law, spoke first about the law's attitude towards genes and their significance when deciding legal parenthood in the family courts. Cases often involved same-sex couples where one partner had donated gametes and another had given birth, making the latter the legal mother. In these cases, the biological connection was a key consideration of the courts. In other cases, courts also looked at the intention of the parties when it came to deciding whether the donor should have any contact with the child.
Gamble argued that although genetics is important to an extent, what is much more important when considering legal parenthood are the intentions of everyone involved and their relationship with the child once it arrives. The audience largely agreed with this position, with the cases cited prompting questions about financial support for the donor-conceived child, and how the courts could shift their focus from genes to intention.
Erika Tranfield is the cofounder of Pride Angel, a website designed to help single, lesbian, gay and infertile couples become parents through donor conception and co-parenting. With personal experience of donor conception and raising children within a lesbian relationship, Tranfield was able to add personal experience to her consideration of whether genes matter.
A recent survey of people who use the Pride Angel website prompted more than 1,000 responses, and gave an insight into the intentions of prospective parents and donors. Donors, when asked to describe their relationship with any children conceived using their donation, mostly said that they had no relationship with them. When asked if they would like a relationship, most prospective donors answered 'maybe'.
One response to the survey from a prospective parent was 'I would like the child to understand that the donor is its biological father, but not really to call him dad'. One donor-conceived child liked knowing who their biological father was, saying 'it allows me to be no different from my school friends, I have two mums but I know who my genetic dad is'. Another child commented 'I am simply grateful to my mum's sperm donor, without him I would have not been born'.
Tranfield stressed the importance of each party understanding the other's intentions when it comes to their role after the child is born. Even when using the same terminology, intention can be confused, and Tranfield argued that getting everything in writing is important. Although not legally binding, this helps ensure that all the cards are on the table, and that everyone has tried to make their thoughts and wishes clear. There should be consistency, not just for the adults but for the child's sake. The audience were almost unanimous on this one, with most audience members agreed that the child should be told about the nature of their conception - the more contentious questions were, when and how?
Anneke Lucassen, Professor of Clinical Genetics at the University of Southampton, emphasised how similar humans are to one another genetically by saying that she was 99.9 percent genetically identical to the Duchess of Cambridge. She explained the scientific and technical aspects of how diseases run in families, using this to illustrate the huge range of opinion regarding what genes mean and whether and how they can predict various diseases and characteristics. There are approximately 25,000 genes, and many different types of inherited conditions.
Professor Lucassen used the analogy of an iceberg. There are a small number of genes that can be relied upon to predict people's characteristics, providing us with the iceberg's tip. But the remainder of our genes cannot be relied upon in this way, either because their interactions with one another are complex or because they are insufficiently understood. They are the submerged part of the iceberg.
For this reason, although donors are screened for genes linked to certain diseases such as cystic fibrosis, the donor's family history is probably of equal if not greater importance. The audience probed further, and found that many prospective parents actually ascribe decreasing importance to genetic traits the further along in the donor conception process they go - ultimately, they want a baby.
Should a family that has used donor conception be told about the subsequent discovery of a disease in the relevant donor? Professor Lucassen found that people's answer to this question differed greatly, depending on whether the discovery did or did not alter the child's chance of developing the condition. Discussion about a child's right to know about a particular genetic condition in the donor sparked lively debate, and Professor Lucassen stressed that there was little evidence to suggest that such knowledge was likely to be beneficial to the child. One of her slides asked: 'Do genes make good predictions about health or disease?' The answer: 'Not so often!'
Carol Smart, Professor of Sociology at the University of Manchester and co-author of the book 'Relative Strangers', spoke about a recent study she conducted with parents and grandparents of donor-conceived children. One participant in the study commented: 'Because I think what we believe is that genetics isn't just about genes. Do you know what I mean?'
This quote illustrated succinctly Professor Smart's point that people aren't always sure about what genetics mean and struggle with the area, feeling as though they are somewhat in the dark. The general consensus among the participants in her study was 'genes always matter, but...'. The significance ascribed to genes varied between people, in terms of how they thought genes worked - some thought it was rather like a rigid computer code, while others thought it was more like a script that you could edit.
The study found that people attributed certain characteristics to genes, such as being good at music or family resemblances. Audience members offered many stories about being told that their child looked uncannily like them, when there was actually no genetic link. Professor Smart found that 'gene talk' was inevitable, even when the families didn't realise it. Grandparents in particular seemed to think it was 'better' to have some genetic link, and some of them tended to forget or deny that their grandchild had been donor-conceived.
Professor Smart's research, and comments and questions from the audience, demonstrated that it's very common for people to hold seemingly conflicting views about the significance of genetics at the same time. The evening's discussion explored what role - if any - genes play in donor conception, and in broader considerations when deciding to have a child. In conclusion, there is no easy answer to the question 'do genes matter?' - it depends who you are.
'Do Genes Matter? Families and Donor Conception' was organised by the Progress Educational Trust in partnership with the University of Manchester's Morgan Centre.