Choices for the futurePreimplantation genetic diagnosis

Nick MeadePolicy AnalystGenetic Alliance UK

Alström Syndrome Family Conference 2012

• 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?

Choices for the futurePreimplantation genetic diagnosis

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.

What is PGD?

The technique

The technique

The technique

The result

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

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

The law

• Human Fertilisation and Embryology Authority (HFEA)

• HFEA Licence Committee• Condition-by-condition licensing• Patient group input

The regulation

• 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...

Patient input

Expert patient input

• Birt-Hogg-Dubé Syndrome• Endorsement both public and private• >70 conditions licensed!

Impact of patient input

• A genetic test? • A licence? • Funding?

What about Alström syndrome?

?

• A postcode lottery• PCT funded• IVF similarities?• The new NHS?• NHS Commissioning Board• Clinical reference groups

Funding of PGD

Thank you!

Nick MeadePolicy Analyst

020 7704 3141nick@geneticalliance.org.uk

Registered charity numbers: 1114195 and SC039299Registered company number: 05772999

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.

Our opinion