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HFEA to consult on use of PGD for late-onset diseases

11 August 2005
By BioNews
Appeared in BioNews 321

The UK's Human Fertilisation and Embryology Authority (HFEA) is to issue a public consultation on the use of 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 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?''

Embryo cancer gene checks debated
BBC News Online |  11 August 2005
Fertility watchdog considers cancer gene screening
The Guardian |  12 August 2005
Should embryo screening help parents prevent passing on a wider range of inheritable diseases?
HFEA Press Release |  11 August 2005
Test-tube embryos may be screened for risk of cancer
The Times |  12 August 2005
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15 May 2006 - by Dr Kirsty Horsey 
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10 November 2005 - by BioNews 
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...
21 August 2005 - by BioNews 
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1 November 2004 - by BioNews 
The UK's Human Fertilisation and Embryology Authority (HFEA) has issued a licence allowing doctors to test embryos for a gene mutation that confers a high risk of bowel cancer. Four couples at risk of passing on familial adenomatous polyposis coli (FAP) to their children are now set to undergo the...
29 October 2001 - by BioNews 
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The first baby screened for a genetic predisposition to cancer later in life has been born in America. Scientists from the Reproductive Genetics Institute in Chicago announced the birth of the baby boy following IVF and preimplantation genetic diagnosis (PGD), on Thursday last week. Eighteen embryos were tested, and the...
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