Bob Dalgleish from Fanconi Hope was invited to attend this Human Fertilisation and Embryology Authority (HFEA) Consultative Meeting on 1st Dec 2009 to review the licensing conditions for PGD for HLA tissue typing (and also for later onset, lower penetrance conditions).

The key objective of the meeting for Fanconi Hope was to present our views questioning the need to continue case-by-case approval currently required for families wishing to go through the Pre-Implantation Genetic Diagnosis HLA Tissue Typing/IVF route to provide an FA free, perfect bone marrow match for their affected child.

Fanconi Hope argued that removing the uncertainty of the HFEA approval process for affected families, when they already have to cope with the stress of the uncertainties of funding and treatment outcomes, would be a key benefit of the move away from case-by-case decision-making.

There was a strong general consensus in the meeting that blanket approval should be given for conditions such as FA so that families should no longer have to seek HFEA approval before embarking on PGD/HLA/IVF and it is hoped that this view will prevail in subsequent recommendations to the HFEA in January. 

More detail is available on the post on the Clinicians page

This entry was posted on Saturday, December 5th, 2009 at 3:04 pm