The Senedd has backed Owain’s Law, a proposal to strengthen consent and transparency around brain tumour tissue use.
Named after Owain James from Caerphilly, who died in 2024 from a grade 4 brain tumour (pictured below right, and above right with wife Ellie and daughter Amelia), the proposal addresses ethical and clinical concerns raised by his family’s experience.
What Owain’s Law proposes
- Patients or families must give clear, written consent before surgery
- Tissue remains the legal property of the patient or next of kin
- Surplus tumour must be fresh-frozen at –80 °C, not chemically treated, to preserve it for research or personalised therapies
- In emergencies, consent must follow within 48 hours
Owain’s family were left with just 1 cm of usable tissue out of 8 cm removed – losing potential access to cutting-edge treatments such as personalised vaccines.
What does this mean in practice?
1 It’s not yet law
This is a non-binding motion, expressing support in principle. To become law, it must be developed into a Member’s Bill or adopted by the Welsh Government.
This is a non-binding motion, expressing support in principle. To become law, it must be developed into a Member’s Bill or adopted by the Welsh Government.
2 The Government response was cautious
Cabinet Secretary for Health Jeremy Miles argued against the motion, stating that introducing a statutory requirement to fresh-freeze all brain tumour tissue risks unintended consequences.
Cabinet Secretary for Health Jeremy Miles argued against the motion, stating that introducing a statutory requirement to fresh-freeze all brain tumour tissue risks unintended consequences.
He explained that clinical teams already use their expert judgement to balance the need for accurate, timely diagnosis with the potential for research and novel therapies. Overriding that discretion through legislation, he warned, could compromise diagnostic processes or create conflict where tissue volume is limited. “That’s why the Government does not believe the case is made for legislation,” he concluded.
Why this matters
Owain’s Law puts the spotlight on a critical issue: how brain tumour tissue is handled, stored, and used. It aims to uphold patient rights, improve research potential, and prevent lost opportunities for treatment.
Hefin David MS (below left), who proposed the motion, referenced the APPG on Brain Tumours report Breaking Down the Barriers, highlighting the urgent need for robust, standardised tissue collection and storage across the UK.
Peredur Owen Griffiths MS also spoke during the debate, sharing that his own mother died of a brain tumour. He said: “Families like mine and Owain's are let down not only by research but also how precious brain tumour tissue is managed.”
Our view
We support steps towards patient-centred legislation. Owain’s Law reflects what we continue to champion:
- Informed, ethical consent
- Fresh-frozen preservation
- Patient and family control over tissue use
We urge the Welsh Government to reconsider its position and to ensure that no more patients lose vital opportunities for treatment or research because of how tumour tissue is handled. And we are grateful to Ellie James, Owain's wife and Hefin David MS's constituent, for her campaign to improve outcomes for Welsh brain tumour patients.
To support Ellie’s campaign for Owain’s Law, sign the petition here.
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