HFEA to consult on use of PGD for late-onset diseases
Dr. Kirsty Horsey
Progress Educational Trust15 August 2005
The UK's Human Fertilisation and Embryology Authority (HFEA) is to issue a public consultation on the use of preimplantation genetic diagnosis (PGD) for late-onset and 'lower penetrance' genetic disorders. The use of this technology to avoid later onset genetic conditions sparked debate recently, following the authority'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 HFEA's policy team has already carried out a scientific review and the authority now thinks it appropriate to hold a wider public discussion on these issues later in the year, including a public event.
PGD involves taking a single cell from a 2-4 day old embryo created using in vitro fertilisation (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 PGD on a case-by-case basis.
PGD is used by couples who have a high risk of passing on a serious genetic disorder to their children. The technique cannot be used for all genetic conditions, but it is suitable for diseases where the single gene involved has been identified (for example cystic fibrosis) and for disorders that usually only affect males (for example haemophilia). PGD can also be used to avoid chromosomal conditions such as Down syndrome, by checking the number and appearance of the chromosomes in an embryo. This type of test is also sometimes offered to patients undergoing fertility treatment, if they have endured repeated miscarriages due to a chromosomal condition.
Now, the HFEA has announced that it will seek the public's opinions on the use of PGD to screen for diseases which do not appear at birth, but which may affect the child born in teenage or even adult years, such as inherited breast or ovarian cancer. The consultation will focus in particular on disorders where the conditions are not 'fully penetrant' (where not all people with the faulty gene will get the disease), such as breast cancer. This, says the authority, raises the question as to whether it is 'appropriate to use embryo screening technology to stop children being born with faulty genes when there is a chance they may never go on to suffer the cancer'.
Angela McNab, Chief Executive of the HFEA said that the HFEA's policy team has identified that it is likely that they will receive applications for using PGD in this way for conditions such as inherited breast cancer 'in the near future'. 'In particular we want to hear the views of patients, carers and representatives of affected families, staff in treatment centres, disability groups, parliamentarians, academics and the wider public', she said. She added: 'The question that we want to ask people is 'should this technology also be used on diseases that people have a lower chance of getting and may occur later on in life?''
Reproduced with permission from BioNews, an email and online sources of news, information and comment on assisted reproduction and genetics.