Widow wants law to give patients rights over tissue

Rhodri Lewis
BBC News
Katie Alexandra Photography Ellie and Owain James pose for a wedding photoKatie Alexandra Photography
Ellie James has been campaigning following the death of her husband

The widow of a man who died from a brain tumour is campaigning for patients to have the right to decide what happens to their own tissue.

Ellie James' husband Owain died last year, and this week she was in the Senedd to hear politicians debate whether it should be adopted in law.

Her local Member of the Senedd (MS), Hefin David, has called for it to be called Owain's Law in his memory.

However Health Secretary Jeremy Miles said he was not minded to agree as it could have "unintended consequences".

Owain James was 34 when he was told three years ago he had a malignant, stage four tumour in his brain.

Half of the tumour was removed, and doctors said the best they could do for Mr James, known as Owen, would be to control the rest of the tumour temporarily.

But he and his wife decided to try an immunotherapy vaccine which was not offered on the NHS.

The vaccine was based on his tumour tissue, and would educate his immune system to recognise the cancerous cells.

The issue for the family was that only a small amount of the tumour was kept, but they say the vaccines used, which were created from his tissue, shrunk the remaining tumour to the extent it could not be detected.

However, the cancer had spread elsewhere and could not be treated and Mr James, from Caerphilly, died in June 2024.

This week his widow visited the Senedd in Cardiff Bay to see her local MS ask the Welsh government to ensure all tissue belongs to the patient, so they can decide what to do with it.

"It's something that every brain tumour patient will face," said Ellie.

Ellie James Owain James, who has brown eyes, brown hair and a beardEllie James
Owain James died in June 2024 after being diagnosed with cancer

"And there's only one chance to get it right so when you have your brain tumour removed, as soon as they've put that in paraffin or they've contaminated it with something, you lose all opportunity of doing something else with it so that one decision has to be the right decision."

David said patients "deserve the right to decide what happens to their tissue, so whether it would be used for research, for vaccines, and that patient deserves that choice so that in future, the destination of their tissue is decided by them".

Campaigners like Dr Helen Bulbeck from the brain tumour charity Brainstrust said doctors need to be clearer with patients about how their tissue may be used.

"There needs to be a grass roots campaign where patients are actually going in and talking to surgeons about what they want their tissue to be used for," she said.

"It's really important that we have a public that's educated and understands what the options are or how their options are limited if they're not asked for consent and if their tissue isn't preserved in the correct way."

During the Senedd debate, David asked ministers to adopt what he called Owain's Law, but Miles told MSs he was not convinced.

"The introduction of a statutory requirement to fresh freeze all brain tumour tissue, in the government's view, risks unintended consequences," he said.

"Clinical teams already use their expert judgment to balance diagnostic needs with the potential for research and novel therapies.

"Overriding that clinical discretion through legislation could compromise timely diagnosis or create conflict where tissue volume is limited which is why the government does not believe that the case is made for legislation."

The campaigners say they want to meet Miles to discuss the matter further.