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Survey request from Genetic Alliance UK.

June 12, 2016

Letter from Genetic Alliance UK regarding genetic screening for couples with Kallmann syndrome undergoing fertility treatment.

We are doing a piece of work relevant to you, and hoped you might like to be involved.

The Human Fertilisation and Embryology Authority (HFEA) has received an application to licence preimplantation genetic diagnosis (PGD) for Kallmann syndrome. This means that a couple in the UK with a family history of the condition have applied to use PGD to conceive achild 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 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. We would, of course, be happy to submit this jointly with your organisation.

Here is a link to the survey.

 

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