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The widow of a man who passed away due to a brain tumour is advocating for patients to have the autonomy to make decisions regarding their own tissue. Ellie James, whose husband Owain died last year, recently attended a debate at the Senedd where politicians deliberated on whether this right should be enshrined in law. Her local Member of the Senedd (MS), Hefin David, has proposed naming this potential legislation as Owain’s Law in memory of Ellie’s late husband.
Owain James received the devastating diagnosis of a malignant, stage four brain tumour at the age of 34. Despite only having half of the tumour removed, he and his spouse pursued an immunotherapy vaccine not available through the NHS, which was derived from his own tumour tissue. This treatment proved successful in shrinking the remaining tumour, although the cancer had already metastasized and could not be treated. Owain passed away in June 2024. Ellie, during her visit to the Senedd, emphasized the critical need for patients to retain ownership over their tissue, especially in situations as delicate as brain tumour treatments.
Advocates like Dr. Helen Bulbeck from the charity Brainstrust argue for better communication between doctors and patients regarding the use of tissue samples. Patients should be informed and empowered to make decisions about the fate of their tissue for research or therapeutic purposes. Despite calls for the implementation of Owain’s Law by David in the Senedd, Health Secretary Jeremy Miles expressed reservations, citing concerns over potential unintended consequences associated with mandating the fresh freezing of all brain tumour tissue. Nevertheless, campaigners remain resolute in their efforts to engage with Miles and further discuss the importance of patient autonomy in healthcare decisions
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