The UK's Human Fertilisation and Embryology Authority (HFEA) has launched a public debate on testing embryos for 'lower penetrance', late onset genetic disorders. A discussion paper, entitled 'Choices and Boundaries', focuses both on genetic tests currently available, such as that for hereditary breast cancer, and possible future developments, such as tests for inherited forms of Alzheimer's disease. Responses to the paper, which is available via the HFEA's website, are invited until 16 January 2006. The HFEA is also holding a public meeting on this subject, on 12 December 2005.
PGD involves taking a single cell from a 2-4 day old embryo created using in IVF performing a genetic or chromosome test on that cell, and then returning one or two unaffected embryos to the womb. In the UK, the use of PGD is regulated by the HFEA, which licenses the procedure on a case-by-case basis. The use of PGD to avoid later onset genetic conditions sparked debate last year, following the HFEA's decision to grant a licence to a team at University College Hospital, London, to use PGD to help couples avoid passing on hereditary bowel cancer to their children.
The discussion paper focuses on disorders where the conditions are not 'fully penetrant' (where not all people with the faulty gene will get the disease), such as hereditary forms of breast cancer. It asks questions such as 'How likely does a disease have to be for embryo testing to be acceptable?' and 'What type of condition should never be tested for in embryos, taking into account the chance of disease, age of onset and treatment available?' It also seeks views on possible future uses of PGD, including inherited forms of Alzheimer's disease, hereditary prostate cancer and inherited brain cancers. In the US, PGD has already been carried out for a couple at risk of passing on a rare, early-onset form of Alzheimer's disease.
Suzi Leather, chair of the HFEA, said the authority wants to hear from patients, carers, affected families, doctors and staff in treatment centres, as well as parliamentarians, academics and the wider public. 'This way we can begin to balance the views and interests of all groups and move towards building a consensus', she added.
Josephine Quintavalle, of the pro-life pressure group Comment on Reproductive Ethics (CORE) said that extending the potential uses of PGD was 'moving towards eugenics'. She told the BBC News website that 'it's all about making endless decisions about who is better off dead'. But Ainsley Newson, a medical ethicist at Imperial College London, said that for couples at risk of passing on a genetic condition, PGD offers 'a real alternative to terminating a wanted pregnancy'. She acknowledged that questions about seriousness would always arise, but asked: 'if we wouldn't wish these diseases on anyone then why shouldn't we let couples avoid this happening to their own children?'