News, 30 July 2009
Should a disabled woman have access to fertility treatment?
Ayesha has a genetic condition which causes muscle weakness and curvature of the spine. She uses a wheelchair and is reliant on her husband and others for day-to-day tasks such as getting out of bed, having a shower and going to the toilet.
There is a 50 per cent chance that her condition will be passed on to any future child. It is possible to screen out the condition in affected embryos. But Ayesha says she would accept any child regardless of its condition and wouldn't want any screening. The law says you cannot screen in a disability, but allows you to screen one out. Is it ethical to consider screening for embryos in effect with the same conditon as Ayesha's if she was offered fertility treatment?
By law, the welfare of any child born through fertilty treatment has to be assessed, and Ayesha's case is no exception. But how does her disability and future health affect the welfare of a child? Is it ethical to put the needs of someone who doesn't exist yet above those of someone who does? Should a fertility treatment request be treated any differently if one of the parents has a disability? Whose job is it to decide what makes someone adequate parents?
Ayesha and her husband had to tick a lot of boxes in order to get fertility treatment. As part of the process their case was referred to the clinical ethics committee. The committee decided Ayesha and her husband should not be denied fertility treatment. But the delay caused by having to jump through additional hoops meant that, should the treatment be successful Ayesha and her husband will be older parents than they had hoped to be.
A panel of experts considers the issues, including:
- what sort of support should be provided to disabled parents
- are fertility experts qualified to make assessments on the welfare of the unborn child?
- life expectancy of the parents may be a relevant consideration, but are disabled people singled out for closer scrutiny than, for example, mountain climbers?
- is there unfair pressure to screen for disability?
The panel consists of:
- Dr Deborah Bowman, Senior Lecturer in Medical Ethics and Law, St George's Hospital University of London
- Dr Alice Maynard, Management consultant and one of the commissioners on the Human Genetics Commission who has Spinal Muscular Atrophy
- Dr Anneke Lucassen, Professor of Clinical Genetics, Consultant at Southampton University Hospitals Trust
Inside the Ethics Committee, Series 5, Episode 3. Radio 4. First broadcast 9:00am, Thursday 30 July 2009.
Visit the programme's website, where you can 'listen again' to the whole programme
Related articles
Fertilisation rights and wrongs. Tom Shakespeare, disabled parent, sociologist and bioethicist, discusses the ethical debate surrounding the 2008 UK Human Fertilisation and Embryology Act. (DPPI Journal 65, Spring 2009)
Pre-natal testing - yes or no? Rebecca Atkinson explores the emotive issue of prenatal screening and why she chose not to test her unborn child for Down's syndrome. (DPPI Journal 64, Winter 2008/2009)
The bumpy road to parenthood. Sarah Allen She discusses her experience of receiving fertility treatment and describes the discrimination they faced as a couple affected by disability. (DPPI Journal 60, Winter 2007/2008)