Owain’s Law is focused particularly on brain cancer and other less survivable cancers,
where tissue removed during surgery can be vital not only for diagnosis, but also for
future testing, treatment options and research. At present, practice varies across the
NHS. Patients are not always clearly told what will happen to their tissue, whether it can
be preserved, or what choices they have over its future use. In practice, this can limit
future diagnostic, treatment and research opportunities depending on where a patient is
Treated.
Owain’s Law seeks to change this by establishing a more consistent, patient-centred
national approach built around four core principles.
Key principles of Owain’s Law
1. A clear national standard for tissue handling and storage
The Problem: current approaches vary widely across the country, creating a postcode
lottery of whether patients can access innovative testing, treatments and clinical trials.
The Solution: Owain’s Law proposes a consistent approach where only the minimum
tissue needed is used for histology, and the remainder is preserved flash frozen: a ‘Gold
Standard’ approach to help retain future diagnostic and treatment options.
2. Simple, informed and consistent patient consent and choice
The Problem: no consistent conversation is taking place with patients prior to their
surgery and sadly patients simply do not have the knowledge of it and its relevance at this
early stage of their journey. There is only one time to get this decision right. Most
worryingly, the campaign has heard from patient’s who initially agree to donate their
tissue to research, later realising that they would have wanted to use this for themselves,
not being able to get it back.
The Solution: Patients should be clearly informed at the right times, and should have
meaningful control over their tissue, with their wishes clearly recorded and respected.
Owain’s Law proposes to implement a standardised national consent process, that
would ensure patients can make informed choices about storage, research use, and
future decision-making.
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