Research Survey - Genetic Alliance

 

Invitation to take part in a Genetic Alliance Survey - if you are a pituitary patient deficient in hormones, and how this affects you on a day to day basis.

IMG 1264

The Human Fertilisation and Embryology Authority (HFEA) has received an application to licence preimplantation genetic diagnosis (PGD) for combined pituitary hormone deficiency type 2. This means that a couple in the UK with a family history of the condition have applied to use PGD to conceive a child who would be free from the condition. 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).

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. 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.

The survey will close on Monday 2nd April.