Inside The Ethics Committee- Assisted Conception And Disability

Radio 4, Thusday, 9am with Joan Bakewell, Prof Deborah Bowman and friend of Same Difference Kaliya Franklin:

Rosemary has battled with severe health problems for many years. She has Ehlers-Danlos Syndrome and, following complications of spinal surgery, she is now a full time wheelchair user and her breathing is impaired. She receives her nutrition via a tube fed directly into her blood stream and she empties her bowels into a bag attached to the small intestine.

She has always wanted a child and now, aged 36 and in the early stages of a relationship, she asks for assisted conception.

The fertility doctor refers Rosemary on to various specialists at the hospital, who enumerate the risks. If Rosemary is to have IVF, she’ll need a general anaesthetic which would be extremely risky for her. Furthermore, any pregnancy could be life threatening to Rosemary and a potential fetus, and the team are concerned about the welfare of a future child. Also, if Rosemary becomes pregnant, her child could inherit Ehlers-Danlos Syndrome as the condition is genetic.

While hospitals look after women with complex problems who are already pregnant, enabling a woman like Rosemary to become pregnant is an ethical challenge of a different order. But Rosemary herself is adamant she wants to take the risk, whatever the potential consequences.

Should the fertility team help Rosemary get pregnant?

Joan Bakewell and a panel of guests discuss this ethical issue.

I’ll be listening with interest.

My personal opinion on this is that Rosemary should have a child if she has a good support network to help her with the child’s physical care, and if she has love to give. The issue of her disability being genetic is of course more complex. However, if her first child inherits the disability by chance, my personal opinion is that she should not have another child, to avoid her disability being inherited again.

Your comments, as always, are very welcome below.