The Human Fertilisation and Embryology Authority (HFEA), the UK’s independent regulator of fertility treatment and research using human embryos, has licensed Pre-implantation Genetic Testing (PGT) to diagnose a rare form of ataxia, Spinocerebellar Ataxia, Autosomal Recessive, with Axonal Neuropathy 3 (SCAN3).
PGT involves checking the genes or chromosomes of your embryos in a lab for a specific genetic condition. This information helps couples to choose whether they want to have a child with a genetic condition.
Ataxia UK provided Genetic Alliance UK with evidence on the impact of SCAN3 on quality of life in those with the condition and their families. This was as part of their consultation survey on SCAN3 that was used to help make the decision by the HFEA to license PGT for SCAN3. The views of people with SCAN3 were sought.
Ataxia UK understands the importance of family planning and supports the PGT licensing process for genetic ataxias to help give couples a choice of having a child free of progressive inherited conditions including SCAN3.
In recent years, Ataxia UK has supported several other applications, which have been successful, including for many of the SCAs as well as DRPLA.
Read more about PGT here.
You can read about the ataxias and other genetic conditions for which PGT is licensed in the UK here.Â
If you have a diagnosis of SCAN3 or know someone who does, please let us know by emailing sparr-reid@ataxia.org.uk so we can add you to our registry to help plan for future trials.
