Question
To ask Her Majesty's Government, further to the Written Answer by Lord Bethell on 5 March (HL1701), why they stated that the Human Fertilisation and Embryology Authority (HFEA) has no role in the follow-up of patients pursuant to mitochondrial donation treatment if it provides contact details on its website for further discussion of this; what recommendations the Scientific review of the safety and efficacy of methods to avoid mitochondrial disease through assisted conception: 2016 update, published in November 2016, made in regard to rigorous long-term follow-up of children born as a result of such techniques; and what assessment they have made of the statement on the HFEA website that those engaging in follow-up to such treatment will be “helping many people affected by mitochondrial disease, now and in the future”.
Answer
The Human Fertilisation and Embryology Authority (HFEA) has no statutory role in following up the clinical outcomes of patients born after mitochondrial donation treatment. However, the HFEA Code of Practice requires any clinic licensed to offer such treatment to have a documented process to enable follow-up, where patients have consented to this. Clinics are also required to report any adverse outcomes following mitochondrial donation treatment to the HFEA.
The statement on the HFEA website is addressed to potential patients and explains that follow-up is useful, as doctors want to understand as much as possible about how mitochondrial donation affects children and future generations. This will ensure that children born following mitochondrial donation get the best possible care in the future, as well as contributing to continued understanding of mitochondrial disease. The Government has not made a specific assessment of this statement.
The 2016 update recommended follow-up of children born as a result of mitochondrial donation in order to gather information about safety and efficacy.