Embryos

(asked on 3rd November 2021) - View Source

Question to the Department of Health and Social Care:

To ask Her Majesty's Government, further to the Written Answer from Lord Kamall on 2 November 2021 (HL3362), how prospective patients are best enabled to give informed consent if the Human Fertilisation and Embryology Authority needs to suppress the release of pertinent data on safety and efficacy of methods to avoid mitochondrial disease through assisted conception; how they consider patient confidentiality may be compromised by the release of anonymised numerical data; and which other approved medical treatments or areas of biomedical research, if any, require similar secrecy regarding safety and efficacy data.


Answered by
Lord Kamall Portrait
Lord Kamall
This question was answered on 16th November 2021

The Human Fertilisation and Embryology Act 1990 (as amended) and the Human Fertilisation and Embryology Authority’s Code of Practice requires centres licensed to offer mitochondrial donation treatment to provide prospective patients with appropriate information about the treatment, including access to genetic consultation and counselling and obtain the written informed consent of patients before treatment can proceed.

The symptoms of mitochondrial disease are often unique to the individual affected, which taken together with the small number of patients approved to date and the need to ensure individuals are not identified, means that it is not yet possible to assess data on safety and efficacy of these methods beyond the number of approvals and details of mitochondrial DNA mutations for each approval. All healthcare professionals must not release data which may make patients and their health conditions identifiable.

Reticulating Splines