It is now possible to avoid passing on aniridia to children using a procedure called pre-implantation genetic diagnosis (PGD)

How did PGD become available for aniridia in the UK?

The Human Fertilisation & Embryology Authority (HFEA) maintains a list of conditions they have approved for PGD in the UK. If a couple expresses an interest in PGD for a condition which has not yet been approved, their PGD clinic must apply to the HFEA for approval. The HFEA has strict criteria for deciding which conditions will be approved. A number of different factors are taken into account before a decision is made. These include the severity of the condition, the likelihood of it being inherited, opinions of expert doctors and the testimony of people affected by the condition.

In early 2015 an application to allow PGD testing for aniridia was made to the HFEA. As part of their evidence gathering, they contacted Genetic Alliance UK, who in turn contacted Aniridia Network UK. We were asked to provide a ‘worst case’ patient’s perspective on what it is like to live with aniridia, which we did. Later in the year we heard that HFEA had approved the use of PGD for aniridia.

Had we not given our input, the evidence to HEFA may have been inaccurate or incomplete. We took the view that if a person wants it, the opportunity to use PGD is legitimate and necessary. We did not express an opinion on whether nor not PGD should be used. We believe people with aniridia can have fulfilling lives and contribute to society. We also believe that people should have accurate and up-to-date information about all aspects of aniridia.