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Rare Cancers

Asked by Andrew GwynneIndependentDepartment of Health and Social CareTabled Answered 26 November 2025UIN 90157

The question

To ask the Secretary of State for Health and Social Care, if he will implement standardised regulations for the (a) collection and (b) storage of rare cancer tissue samples obtained for the purposes of (i) medical treatment and (ii) future research.

Answered by Dr Zubir Ahmed

The Human Tissue Authority (HTA) regulates organisations that remove, store, and use human tissue for scheduled purposes, including research and medical treatment.

Under the Human Tissue Act 2004, appropriate consent is always required to remove tissue from the deceased for research purposes. Tissue from living patients, for example biopsy or blood samples, can ordinarily be used for research only with the person's consent. The HTA ensures that it is removed and stored in an appropriate and well managed way.

Consent is not required for research on tissue from living patients if the samples are anonymised or coded to make sure patient or participant information is not identifiable, and the project has recognised ethics committee approval, or if the tissue samples were obtained before 1 September 2006, when the Human Tissue Act came into force.

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