Widow Calls for ‘Owain’s Law’ to Give Patients Control Over Surgical Tissue Use

A widow is urging the Welsh government to introduce a law that would grant patients the right to decide what happens to their tissue following surgery. Ellie James, whose husband, Owain, died from a brain tumour in 2024, believes that clearer patient rights could help unlock potential treatment options that are currently out of reach. This week, she attended a Senedd debate where her local Member of the Senedd (MS), Hefin David, proposed legislation that could be named “Owain’s Law” in memory of her late husband.

Owain James was diagnosed at 34 with a stage four malignant brain tumour. Surgeons removed half of the tumour, and the family was told the remaining portion could only be managed, not cured. The Jameses opted to try an immunotherapy vaccine based on the tumour tissue, an option not available through the NHS. While the vaccine appeared to shrink the tumour to undetectable levels, the cancer had already spread elsewhere in his body. Only a small amount of tissue had been preserved, and Ellie James now argues that more could have been done if they had the right to determine how the tissue was handled.

Ellie James said the decision on how tissue is preserved must be made carefully, explaining that “once it’s put in paraffin or contaminated, you lose all opportunity of doing something else with it.” She added that there is only one chance to get it right during surgery, and patients deserve to be informed and empowered to make that decision.

During the debate, Hefin David said that patients “deserve the right to decide what happens to their tissue,” whether it is used for research or therapy, and argued that they should have the final say. Support for the proposal also came from Dr Helen Bulbeck of the Brainstrust charity, who said it is vital for patients to talk directly to surgeons about their wishes and to understand how choices made during surgery can limit future options.

Health Secretary Jeremy Miles responded that the government was not currently persuaded by the case for legislation. He cautioned that a legal requirement to preserve all brain tumour tissue by fresh freezing could have unintended effects. He said clinical teams already make expert decisions to balance diagnosis and research needs and that overriding this with legislation might compromise timely diagnosis or create conflict over limited tissue volumes.

Campaigners, including Ellie James, continue to seek further dialogue with ministers to explore patient rights and informed consent around tissue preservation.

DOWNLOAD IPFS