Inside the ethics committee. 1/4, Assisted conception and disability.

Radio documentary presented by Joan Bakewell about ethical dilemmas, discussed witht the help of a panel. This episode is about assisted reproduction for people with multiple disabilities and looks at the case of Rosemary who has Ehlers-Danlos Syndrome. In the past, Rosemary was a paralympic swimming medallist, but is now in a wheelchair after spinal collapse along with other serious health problems. Rosemary talks about the impact of her disabilities and how at 36 having a child has become her next goal as her right, despite genetic implications. The fertility team carries out a welfare of the child assessment. Rosemary emphasises the things in her favour, but her fertility is low and she needs IVF. Nevertheless, she feels pregnancy is right for her and that the fertility team should do all they can to help her. Joan Bakewell asks a panel if she's right? The panel consists of Deborah Bowman, professor of ethics and law at St. George's, University of London, Kaliya Franklin, a disability campaigner who has Ehlers-Danlos Syndrome and Alison Murdoch, gynecologist and professor of reproductive medicine and head of the fertility centre at Newcastle Hospital. A brief discussion follows on the NICE guidelines and whether some of Rosemary's issues may be covered by the Human Fertilisation and Embryology Act which takes into account how patients are assessed and the welfare of the child. Each of the panel members give their view on the situation and Kaliya talks about Ehlers-Danlos Syndrome and how it affects her. She also talks about how Rosemary's sense of risk is different to normal people as living with risk is a normal part of her life. Discussions then follow on Rosemary's views, the genetic situation and ethics and Joan Bakewell asks the panel what they would do if they were the ethics committee. In the real life ethics committee the decision was made not to offer Rosemary fertility treatment. The fertility counsellor explains the decision. The story moves on, and Rosemary, now 38, entered a competition to win a round of IVF at a private clinic and won. A doctor at the clinic explains the system and how they felt the risks were high but not insurmountable. The panel have a discussion about the ethics of the situation, public versus private health and Rosemary's choice. The pregnancy is successful but not without a number of serious complications. The the panel talk about the life threatening complications, risk, the decisions of different clinical teams, and the preparations Rosemary made for the future of the child in the event of her death. Rosemary talks about her happiness and how she is now maximising her health.