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Choices for the future

Choices for the future. Preimplantation genetic diagnosis. Nick Meade Policy Analyst Genetic Alliance UK. Alström Syndrome Family Conference 2012. Choices for the future Preimplantation genetic diagnosis. What is preimplantation genetic diagnosis (PGD)? What is the technique?

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Choices for the future

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  1. Choices for the future Preimplantation genetic diagnosis Nick Meade Policy Analyst Genetic Alliance UK Alström Syndrome Family Conference 2012

  2. Choices for the futurePreimplantation genetic diagnosis • What is preimplantation genetic diagnosis (PGD)? • What is the technique? • What is the legal situation? • How is Genetic Alliance UK involved? • What does this mean for Alström syndrome UK? • The funding of PGD?

  3. What is PGD? PGD allows couples who are at risk of having a child with a genetic condition to avoid the birth of an affected child. It is an option, alongside all other reproductive options for couples in this position.

  4. The technique

  5. The technique

  6. The technique

  7. The result

  8. The law The revision of the Human Fertilisation and Embryology Act in 2008: • Research involving human embryos • Cytoplasmic hybrid embryos • HLA tissue typing (saviour siblings) • Preimplantation genetic diagnosis

  9. The law The end result: For a licence to be granted for a clinic to use PGD to avoid the birth of a child with a particular genetic abnormality, the HFEA must be satisfied that a person with this genetic abnormality: “will have or develop a serious physical or mental disability, a serious illness or any other serious medical condition.” Human Fertilisation and Embryology Act 2008

  10. The regulation • Human Fertilisation and Embryology Authority (HFEA) • HFEA Licence Committee • Condition-by-condition licensing • Patient group input

  11. Patient input • Statements of opinion • Describe the impact of the condition on the patient: Physical, psychological, social, vocational, emotional, treatment... • and on the family: Opportunity costs, being a carer, other siblings, family life, emotional, psychological, social...

  12. Expert patient input

  13. Impact of patient input • Birt-Hogg-Dubé Syndrome • Endorsement both public and private • >70 conditions licensed!

  14. What about Alström syndrome? • A genetic test? • A licence? • Funding?   ?

  15. Funding of PGD • A postcode lottery • PCT funded • IVF similarities? • The new NHS? • NHS Commissioning Board • Clinical reference groups

  16. Thank you! Nick Meade Policy Analyst 020 7704 3141 nick@geneticalliance.org.uk Registered charity numbers: 1114195 and SC039299 Registered company number: 05772999

  17. Our opinion Genetic Alliance UK believes that the opportunity for parents and families to use preimplantation genetic diagnosis to avoid the birth of a child affected by a serious genetic condition is legitimate and necessary. Genetic Alliance UK would actively endorse a decision by the HFEA to issue a licence for preimplantation genetic diagnosis for a serious genetic condition, as it provides an additional option to parents who find themselves to be at risk of having a child affected by this condition and who wish to take action to avoid this possible outcome.

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