Radio Review: Inside the Ethics Committee - Assisted Conception and Disability

Inside the Ethics Committee: Assisted Conception and Disability BBC Radio 4, Thursday 8 August 2013 Presented by Baroness Joan Bakewell

'Inside the Ethics Committee' is a fascinating series of programmes exploring the ethical questions arising in medicine, and if you're anything like me, this will become a show not to miss.

This week's show focused on the ethics surrounding the use of assisted conception in the case of 'Rosemary'. The talented host, Joan Bakewell, presented Rosemary's case excellently, asking insightful and thought-provoking questions to a distinguished panel while telling the story of Rosemary and her team of specialists.

Rosemary is a 36-year-old woman who suffers from Ehlers-Danlos syndrome and complex spinal conditions that have left her in a wheelchair. Rosemary also has a sleep disorder, which means she could drop off at any moment, and receives nutrition directly into her bloodstream via a tube. Having tried to conceive naturally for over a year, Rosemary's fertility is low, making IVF her best chance at becoming pregnant.

In the show, Rosemary's testimony proves she is an intelligent and determined woman who has been able to overcome many challenges in her life. She had longed to have a child of her own, but there were, as you might expect, a raft of concerns over the risk to her own health and that of the potential fetus. For Rosemary, this included issues of nutrition and mobility, the worsening of her spinal condition and life-threatening infections from her nutrition tube. For the fetus, there were issues of nutrition and the possibility of Rosemary's medication affecting its development. Pregnancy — even conception — would increase Rosemary's risk of blood clots, to which she was already prone. Her doctors were concerned that any pregnancy would not be able to go to term, and even if Rosemary could cope with pregnancy, the labour could be life-threatening.

There was one other huge risk involved: the 50/50 chance of a biological child inheriting her condition, with doctors unable to screen for an embryo free from the syndrome.

Even with her complex conditions and the grave concerns of the medical team, Rosemary was adamant she wanted to conceive: 'I felt it was my risk to take, almost a feeling that pregnancy is a right. I expected if I couldn't get pregnant that a doctor should be able to help me get pregnant'.

After this first chapter of background was given, Joan Bakewell introduced her illustrious panel of experts: Alison Murdoch, Professor of Reproductive Medicine and Gynaecologist at the University of Newcastle; Deborah Bowman, Professor of Ethics and Law at St George's, University of London; and Kaliya Franklin, a disability campaigner with Ehlers-Danlos syndrome.

The panel discussed the notion of risk and the idea of the welfare of the child, all providing a useful and articulate insight into the issues facing both Rosemary and the NHS team. Most interesting for me was Kaliya Franklin's view of risk. She stated: 'Rosemary and other disabled people understand risk in a very different way to people who aren't disabled, and particularly from clinicians, because we live with the risk as part of our everyday lives, so we learn to accept and deal with it'.

Interestingly, while the panel was somewhat divided as to whether Rosemary should be granted IVF treatment, they all agreed she should explore the risk and discuss her motivations more in depth.

Joan Bakewell then carried on describing how Rosemary's case developed. She was refused IVF treatment on the NHS, but entered into a competition run by Infertility Network UK to win a free cycle of IVF. As fate would have it, Rosemary was chosen for the free cycle. The clinic agreed, despite the medical and ethical difficulties, having had previous experience with more complex cases, and there being no ethical concern about payment, as she was getting it for free. The panel - particularly Alison and Deborah - raised their concerns over the privatisation of fertility treatment. It was also fascinating to hear the differing opinions the private provider took, while exercising the same legal and ethical framework.

After nine eggs were harvested, two viable embryos formed, and one embryo implanted, Rosemary became pregnant. The pregnancy was traumatic in several ways. Firstly, many of Rosemary's family responded to the news with hostility, while others have not spoken to her since.

While pregnant, Rosemary was back in the care of NHS. There were several complications, all of which Rosemary had been warned about. At week 25, she was placed in intensive care for two weeks following an infection in her feeding tube. This made Rosemary question her decision, and she made arrangements in case she died in childbirth, not only with the father but also with two other families willing to care for her child.

At 35 weeks Rosemary had a caesarean section, during which she was completely sedated. Rosemary gives birth to Maria, and both mother and child survive. There can be no doubt after hearing Rosemary talking about Maria that she is a deeply loved child. Rosemary is deemed by social services to be able to meet the Maria's needs, but has to have full time support at night and partial support in the day.

The economic cost to the NHS and social services was not covered in the show in any great depth, but this is only a minor critique of what otherwise was an impressively detailed and sensitively handled show. The comments posted online, however, show that the financial implications to the state are of great concern to many, who questioned whether those who got pregnant against medical advice should be reliant on the NHS. I personally find this fiscal conservatism to be a poor disguise for discrimination. There are plenty of able-bodied people reliant on the state for support, both financial and otherwise. There are also plenty of disabled people who conceive naturally and the state rightly supports them. It seems somewhat discriminative, then, to say that the disabled infertile person should not be supported like everyone else.

This was truly a thought-provoking piece, something one expects from Radio 4. The panel's expert knowledge was clear and Joan Bakewell does an excellent job of furthering the discussion and providing an excellent narrative of the issues involved. I actively encourage BioNews readers to listen and make their own view about the ethical decision.