Newspaper stories claiming that fertility regulators in the UK have allowed embryos to be destroyed for 'minor disorders' are unrelated to decisions taken at a recent regulatory meeting. Stories last week said the Human Fertilisation and Embryology Authority (HFEA) had allowed doctors to routinely screen out more than 100 genetic disorders using PGD. But, according to HFEA sources, the list of genetic disorders approved for PGD has been on the website for at least three years.
Two decisions taken at an authority meeting on 20 January 2010 were about PGD, but did not concern the list. Formal minutes from this meeting will be agreed on 24 March 2010. The HFEA agreed at the meeting on 20 January that PGD with exclusion or non-disclosure testing is acceptable, but exclusion testing is preferred, resolving uncertainty over whether these techniques can be used. The HFEA plans to issue a set of non-disclosure testing guidelines for clinics.
Exclusion tests identify embryos without disease-linked chromosomes from an affected grandparent by testing the grandparent and embryo for the chromosome. Non-disclosure tests the embryo for the condition directly. Both cater to parents who want healthy children, but don't want to know if they carry a disease. Exclusion testing of grandparents for Huntington's disease was briefly mentioned in press coverage in The Times newspaper. According to HFEA sources, it is the only link between the newspaper coverage and the meeting.
The meeting also agreed that late onset, lower penetrance conditions - developed in early adulthood by some people with the gene variant - can be screened for by any clinic licensed for PGD that follows HFEA guidelines. Clinics previously had to ask the HFEA every time they screened for gene variants like BRCA1, which significantly increases the risk of breast cancer. This decision was made because the HFEA believes each case of BRCA1 is similar.
Tissue typing, the procedure used to create so-called 'saviour siblings', however, will still be considered on a case-by-case basis for the immediate future.