PGD IVF Application -Can You Help?

Genetic Alliance UK LogoWe have been asked by Genetic Alliance UK for feedback from our FA community about the effects of FA from the perspective of patients (rather than the clinical aspects of a condition).

This is so that evidence can be submitted to the licensing committee of the Human Fertilisation and Embryology Authority (HFEA) to seek approval for preimplantation genetic diagnosis (PGD) for Fanc J. (Currently only Fanc A, C and N are approved). Although the survey related directly to Fanc J, Genetic Alliance UK is taking the view that the social and psychosocial issues are broadly similar, so they would like anyone with FA to complete the survey. Deadline is May 21st.

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Human Fertilisation & Embryology Authority | HomeThe HFEA has received an application to licence PGD for Fanconi anaemia, complementary group J. This means that a couple in the UK with a family history of the conditions have applied to use PGD to conceive a child who would be free from the disease. You can find out more about the reproductive technique, preimplantation genetic diagnosis, here, and the HFEA call for information on this condition here.

When the HFEA committee makes a decision on whether to licence PGD they make this decision based on whether they think that the condition is ‘sufficiently serious’. We provide statements to the HFEA detailing the effects on an individual from the perspective of patients (rather than the clinical aspects of a condition). To fairly represent the ways that some patients could be affected by the condition, we outline the worst case scenario for those affected.

We hope to provide some patient voice on the issue, and to aid us in this work have developed a survey which we would be really grateful if you could fill in. If you feel it is appropriate we would also encourage you to disseminate the survey to patients with the condition (and their families and carers). We would also welcome responses from those with other types of Fanconi anaemia. We feel that it is really important for patients to have a voice in the process of licensing for this reproductive technique, and your input would be invaluable in this.

The answers from the survey will be used to develop a statement detailing the way that the condition affects those who have the condition from a social and psychosocial point of view. This would then be submitted as evidence to be considered by the licensing committee at the HFEA.  Here is a link to the survey.

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