It was interesting yesterday to attend an event that included assisted reproduction and donor conception, but where the focus was on the well-being of all future children. Making Tomorrow’s People: How far should we go? Who is to decide? was a clinical ethics symposium put on by the Clinical Ethics Committee of Great Ormond Street Hospital (the leading hospital for children in the UK for those readers from abroad). Anyone who saw the recent TV films about treatment of children with life challenging disorders at this hospital, will understand the sort of dilemmas faced everyday by neonatologists, paediatricians and paediatric surgeons at special units like GOSH. Tiny bodies swollen with tumours or organs growing in the wrong place, appalling facial disfigurements; twisted or missing limbs. The graphic pictures made me sad and also profoundly grateful that all three of our children were born whole and well.
The (very long) day was divided into several sections, following a developmental pathway. The day was superbly chaired by James Naughtie, one of the presenters from Radio 4’s Today programme. Walter spoke in the Pre-Natal session, mixing the story of his own infertility and our recourse to donor conception with wider topics like pre-implantation genetic diagnosis and the challenge of multiple births, from his time on the HFEA. His theme with our personal story was the difference between who was in charge and making the decisions when we had treatment thirty years ago and what happens now. Essentially the doctors made all the decisions then and we meekly went along with (most) of what they said. We also only paid about £50 per cycle, a fraction of the price charged in private clinics today. The only way in which we defied medical authority was in telling our children about their conception early.
The most important message delivered by Stephen Wilkinson, Professor of Bio-ethics at Lancaster University speaking to the topic of the ethics of selective reproduction was that saying “Life without X (fill in disease or condition of choice) is generally better than life with X does not mean the same as lives with X are not worth living”.
The next two sessions, Neo-Natal Intervention and Perfecting/Changing Children had nothing to do with donor conception but were fascinating and moving. There was Robert Wheeler, paediatric surgeon from Southampton whose natural habitat is clearly the operating theatre, hanging out in his green scrubs rather than scrubbed up in a suit in a lecture theatre. A quietly spoken practical man, he spoke with passionate intensity about his patients and his loathing for having to be involved in finances or management; then John Wyatt recently retired Professor of Neonatal Paediatrics at UCL talked about his dislike for guidelines in terms of weeks of gestation when making decisions about interventions with very premature babies. His preference for individual assessment of each tiny form and the family into which s/he has been born spoke of a willingness to engage at a relationship level with parents. I could imagine his huge hands tenderly cradling a tiny baby. I am sure he is much missed on the wards. And finally in the Neo-Natal session was Dr Hilary Cass, passionate in her advocacy for children’s services and scathing about this government’s neglect of them.
Russell Viner’s dilemmas are of a significantly different order. As professor of adolescent medicine at UCL, some of his patients are young people who are convinced that they are growing up in the wrong body. Apparently gender identity is formed by age three and children as young as five can have a ‘brain sex’ that is different to their external gender appearance. Extraordinarily, there is no data whatsoever on how common this is. Until quite recently young people in the UK who were committed to changing sex could not begin the treatment process until they were 16. However, at UCL they have quite recently changed to following the Dutch model of beginning to treat at 12, shortly after puberty has begun. I know nothing about this area, but as, according to Professor Viner, 80 percent of those born boys but wishing to change to being female, change their minds before puberty, the new protocol sounds a risky strategy.
The late afternoon session entitled Children, Families and the Law returned to the realm of donor conception via a focus on forms of family that do not conform to heterosexual couples with 2.4 children. Eia Asen, Consultant Psychiatrist from the Marlborough Family Service in London is often asked by the courts for an expert opinion on where and with whom a donor conceived child should be living when lesbian mothers get into dispute with their donor, often a gay man. Mirroring the experiences encountered by DC Network, Dr. Asen spoke about the strong and unexpected paternal feelings experienced by known donors clashing with the protective instincts and expectations of a ‘hands off’ uncle-type relationship with the donor, of the lesbian mothers. It was rare that the donor and the women concerned had made written agreements prior to insemination. Dr. Asen was very clear that a child’s best interests were always served by living in a climate where relationships between the adults caring for them were harmonious. The structure of the family makes no difference whatsoever, it is the warmth, attention and responsiveness of the adults concerned that nurtures a child’s ability to grow in all possible ways. The final message from Eia Asen was an important one, perhaps particularly addressed to his own colleagues as much as to the courts, and it was that every effort should be made to resist the temptation to pathologise difference and differentness. This sentiment was supported and augmented by Susan Golombok from the Centre for Family Research at Cambridge who pointed out that 30 years of research on lesbian families showed that children did very well, or even better, than in heterosexual couple families and that neither boys nor girls showed a propensity, beyond average percentages of the population, to lesbian or gay sexuality. Rounding off this session retired High Court judge Sir Mark Hedley first made a case for involving the court when all options for resolution of a family situation involving children had been exhausted. It was often very helpful for an uninvolved but well informed party to be able to take a fresh view and sometimes took great pressure off doctors, particularly in disputes where treatment of a child was involved. He was clear that decisions would always be made putting the welfare of a child first, but that it would be wrong to assume that these decisions were always completely impartial. Judges have families, family history and experiences, and what constitutes ‘welfare’ is always subjective. Very human and very humane I thought.
Despite, or because of, the stimulation of the day, I was exhausted by 5pm so did not stay for the wine reception followed by a debate with Professor Deborah Bowman and Professor Janet Radcliffe-Richards. I am sure this would have been very worthwhile but I just can’t concentrate for this long. Apparently events of this length are normal in the medical field, which makes me pleased that those conferences I normally attend are not organised by medics.
A very worthwhile day, however.