28 January 2013
ByAppeared in BioNews 690
The second debate in the Progress Educational Trust's project 'When It Takes More Than Two', which is supported by the Wellcome Trust, took place at University College London last week. The debate, 'Receiving: The Recipient Parent Perspective', focused on the views of those who have received donor gametes to begin their families.
The first speaker was Caroline Spencer, a professional lifestyle coach and cognitive behavioural hypnotherapist. Caroline's story was particularly emotive; she spoke of her physical and emotional struggle surrounding the use of donor gametes. Caroline explained how she had always wanted children but at the age of 36 found herself single - and with fertility issues.
After a number of failed or cancelled treatments, Caroline finally gave birth to a boy, now five years old. Although Caroline said attitudes towards donation have improved since she started treatment, she explained how difficult it was to let go of notions of a 'perfect' situation with a partner and being able to start a family without any outside assistance.
Caroline set up her own website to help women discuss the issues faced by women starting a family alone. Women in her position, she said, often have to deal with negative stereotypes and it can be difficult to challenge the expectations of family and loved ones when making this decision. Caroline felt that the donors in her case gave 'an amazing gift'. She emphasised the importance of speaking out and raising awareness of the situation, so that her son can be 'acknowledged and appreciated so he can talk freely about how he came to be'.
Olivia Montuschi was the next speaker, a mother of two donor-conceived young people and a founder of the Donor Conception Network. Once again this was a personal story that really highlighted the emotions and decisions facing recipients of donor gametes. Olivia explained that the realisation that her husband was infertile was 'visceral' and required considerable adjustment.
Olivia spoke of the wider support network available to her children, and strongly believed that the more open and honest parents are with their children, the better they will grow up. She emphasised the importance of focusing on the child and not on the parents, particularly when it comes to telling the child about how they came to exist. By doing this, Olivia said, we will have confident and comfortable parenting in an open, healthy environment.
Sue Moore, senior fertility counsellor at Guy's and St Thomas' NHS Foundation Trust's Assisted Conception Unit, offered a different perspective on the subject. Sue spoke about the legal framework surrounding the information given to recipients of gamete donation. Under the Human Fertilisation and Embryology Authority's (HFEA) Code of Practice non-identifying relevant information is given before the birth of the child, which could include things such as religion, hobbies and interests.
Sue conducted a small survey to further understand how each clinic decided what 'non-identifying' information was and found very little difference between them. Almost all mentioned the need for the recipients to match certain things like hair colour, face shape and body shape too.
We then heard how the prospective parents talk about the donor. Sue encouraged open discussion and had found that many couples do not talk about the donor at the start of the process, perhaps to avoid offending their partner. It was noted that often those seeking donor gametes are very interested in the donor's reason for donating, and that an altruistic mindset was important to many couples. The message that the donor could leave the recipients a goodwill message was also important, even for those couples who didn't want much information at all.
Dr Nicky Hudson, senior research fellow at De Montfort University's School of Applied Social Sciences, spoke next on her research into gamete donation in British South Asian communities. She spoke to couples using donor gametes to ascertain the social context and the implications of their choice. She also consulted a range of professionals working in the area, with the idea that ethnicity may greatly impact decisions regarding fertility treatment. She warned us not to always assume that the donor recipients are a white, middle class couple.
Ideas regarding donors are culturally shaped, Nicky argued, for example placing a greater emphasis on the religion of the donor is very important for some couples. Particularly for South Asian communities, Nicky found that voluntary childlessness is very uncommon and that there is stigma attached to infertility and using donors. These attitudes are often attached to the cultural norms surrounding the legitimacy of children, which comes back to the relatively unanswered question of what - in terms of physical characteristics - is really inherited from donated gametes.
Professor Marcus Pembrey, clinical geneticist and founding chair of trustees at the Progress Educational Trust, spoke of the concerns a recipient parent may have about what would be inherited from donors; not just ethnicity or other physical characteristics, but also potential genetic diseases.
Marcus explained that wherever possible an extensive family history of the donor is taken. It is hoped that by doing this many major conditions would be screened out. Marcus argued that as the technology is advancing and costs are coming down, we should be doing more to screen not only donors but recipients as well.
Overall, our knowledge is limited in this area. Height is often largely genetic, but is influenced by 335 genetic variants - and this only explains 15 percent of the variance. Marcus spoke of a study that looked at the height of children born in 1958 as they grew into adulthood. The results were mixed and showed no correlation between tall parents and tall children. The tallest father was 208cm and the tallest son was only 202cm. The tallest daughter was one of only three in 10,000 that were taller than the tallest mother. Height seemed to regress back to the mean, he explained, so no use looking for a basketball-playing sperm donor if you want to have tall children. Other factors, like intelligence, have an even shakier genetic component and may be predominantly down to social and developmental upbringing.
It was then over to the audience, who produced a lively discussion and probed the panel to dig further and answer some tricky questions. The discussion started off surrounding disclosure to children about using a donor, and quickly moved on to genetic screening. At this point Marcus argued that the HFEA should be doing more to widen screening due to the advances in genetic science.
Caroline was then questioned on her views on 'solo' mums, and the discussion moved rapidly again on to disclosure to children and whether there is a moral or legal duty to disclose. Suggestions included producing a 'donor certificate' in a similar way to an adoption certificate, to make the process more open and perhaps easier to talk about.
The discussion, as always, threatened to overrun, so chair Juliet Tizzard, head of policy and communications at the HFEA, was firm but fair when collecting the last few questions from the packed audience. The panellists commented that it made a nice change that the donor recipients were given some thought in the process, as the debate is so often concerning the donors and the children. I'm sure many of the attendees will be looking forward to exploring similar issues at the final event in the project, 'Being: The Donor-Conceived Perspective'.