The Human Fertilisation and Embryology Authority (HFEA) is the UK’s independent regulator of fertility treatment and research using human embryos. They have licensed Pre-implantation Genetic Testing (PGT) to diagnose a rare ataxia, Autosomal Recessive Spinocerebellar Ataxia Type-17.
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 SCAR17 on quality of life. This includes those with the condition and their families. This was as part of their consultation survey on SCAR17. The consultation was used to help make the decision by the HFEA to license PGT for SCAR17. The views of people living with and affected by SCAR17 were sought.
Ataxia UK understands the importance of family planning and supports the PGT licensing process for genetic ataxias. The process aims to help give couples a choice of having a child free of progressive inherited conditions including SCAR17. In recent years, Ataxia UK has supported several other applications, which have been successful. These include many of the SCAs as well as DRPLA.
Read more about PGT here.
Read about the ataxias and other genetic conditions for which PGT is licensed in the UK here.
