When Ellie James lost her husband Owain to an aggressive brain tumour in 2024, she learned something almost impossible to live with: more of his tumour tissue could have been frozen and preserved, and in the future might have helped create a personalised vaccine or supported vital research. No one had clearly explained that option to them at the time. Now, Ellie is taking her fight—known as “Owain’s Law”—to parliament, so other families don’t have to discover these possibilities only after it’s too late.


Owain James smiling with his wife Ellie and their daughter outdoors
Owain James with his wife Ellie and daughter Amelia. His story is now driving a national conversation on brain tumour tissue and research use. (Image: BBC News)

Why Owain’s Law Matters for Brain Tumour Patients and Families

Owain’s Law is not about promising miracle cures. It’s about something more grounded—and arguably just as powerful: making sure that when brain tumours are removed, as much tissue as safely possible is properly stored, catalogued, and made available for research and, where appropriate, for emerging personalised treatments such as therapeutic vaccines.

This page breaks down what Owain’s Law is calling for, what we currently know about brain tumour tissue and vaccines, and—most importantly—how patients and families can start asking informed questions right now, even before any law changes.


The Problem: Missed Chances to Use Brain Tumour Tissue

Brain tumours remain one of the most challenging cancers to treat. In the UK and elsewhere, standard care usually involves:

  • Surgery to remove as much of the tumour as safely possible
  • Laboratory analysis of a small part of the tumour for diagnosis and grading
  • Radiotherapy and/or chemotherapy

However, only a fraction of the removed tumour is typically preserved long term. Some of it is used immediately for diagnosis; some may be stored in pathology archives in a way that’s not always suitable for advanced future research or personalised immunotherapies.

According to UK brain tumour charities and parliamentary evidence sessions in recent years, there are three recurring problems:

  1. Lack of clear communication: Many patients and families are not told—in plain language—that more tumour could be stored, or how it might be used in the future.
  2. Inconsistent practice between hospitals: Some centres routinely bank more tissue and link it to research networks; others do very little beyond basic diagnostic storage.
  3. Underused research potential: Researchers highlight that brain tumour tissue is precious, but national systems for collecting, standardising and sharing it remain patchy and underfunded.
“Every piece of tumour tissue is an opportunity to learn. When that tissue is discarded or poorly stored, knowledge is lost—and with it, potential benefits for future patients.”
– Neuro-oncology researcher, UK academic centre

Owain and Ellie were not fully informed that more of his tumour could be frozen and possibly used in future trials or vaccine approaches. That gap in communication is at the heart of Ellie’s campaign.


What Is “Owain’s Law” Trying to Change?

As reported by BBC Wales and discussed at Westminster, Owain’s Law is a campaign to change how the NHS handles brain tumour tissue, with a focus on transparency, consistency, and long-term thinking.

While the exact legal wording is still under discussion, the core aims being raised in parliament include:

  • Routine freezing (biobanking) of brain tumour tissue wherever clinically possible, rather than discarding or minimally storing it.
  • Standardised consent processes so that patients (or their families) are clearly asked if they want tissue stored for:
    • Future research
    • Potential, as-yet-undeveloped personalised treatments or vaccines
  • National coordination of brain tumour tissue banks, making it easier for approved researchers to access anonymised samples.
  • Clear, compassionate communication so families understand:
    • There are no guarantees of a future treatment
    • But preserving tissue could expand options for research and for patients down the line

Ellie’s message to lawmakers is simple: if we can make storing brain tumour tissue the default—paired with informed consent—we reduce the chances that families miss out purely because no one explained it or systems weren’t in place.


The Science: Brain Tumour Tissue, Vaccines and Emerging Treatments

Brain tumour science is moving, but slowly. High-grade gliomas and other malignant brain tumours are notoriously complex. Over the past decade, researchers worldwide have been exploring:

  • Personalised cancer vaccines made from a patient’s tumour proteins
  • Cell-based immunotherapies (including CAR-T cell trials in some centres)
  • Genomic profiling to match tumours with targeted drugs

These approaches all depend on high-quality tumour samples. The better the tissue is preserved—often by freezing it rapidly at very low temperatures—the more scientists can:

  1. Sequence the DNA and RNA of the tumour
  2. Study the immune “microenvironment” around it
  3. Identify unique tumour markers (antigens) that might be used in vaccines
Carefully stored tumour tissue is essential for genomic analysis and future treatment research. (Representative lab image)

Evidence from early trials (for example, personalised glioblastoma vaccines in Europe and North America) shows:

  • Some patients can mount an immune response to tumour-derived vaccines.
  • A minority have experienced extended survival compared with historical averages, though results are far from uniform.
  • These therapies remain experimental, often restricted to clinical trials, and are not guaranteed to help.
“Tumour banking today is an investment in tomorrow’s treatments. We can’t promise any one person a benefit, but we can say that without good tissue, progress will stall.”
– Consultant neuro-oncologist, quoted in UK parliamentary evidence on brain tumours

Owain’s Story: A Family’s Grief Turned into Advocacy

Owain James was a husband and father living in Wales when he was diagnosed with a brain tumour. Like many families, the Jameses were thrown into a whirlwind of appointments, scans, and surgery dates. Their focus—understandably—was on survival and on staying present for their young daughter.

After Owain died in 2024, Ellie learned through conversations with clinicians and experts that:

  • More of his tumour tissue could have been frozen and stored.
  • That tissue might not have changed Owain’s outcome—but could have contributed to research or future therapies, including vaccine-style approaches.
  • No one had clearly explained this option or its implications while he was alive.
Woman holding a child’s hand during a hospital visit
Families facing a brain tumour diagnosis already cope with enormous emotional pressure; clear, timely information about tissue options can ease some regret later.

In parliamentary coverage, Ellie has been careful not to suggest that tissue storage alone would have saved Owain. Instead, she talks about:

  • Choice: The right to know what could be done with tumour tissue.
  • Fairness: The desire for consistent practice, no matter where you live or which hospital treats you.
  • Legacy: The comfort some families find in knowing their loved one’s tumour is helping others through research.
“If we’d known there was even a chance that Owain’s tumour could help someone else in the future, we would have said yes in a heartbeat. No family should be kept in the dark about that.”
– Paraphrased from public comments by Ellie James in coverage of Owain’s Law

Practical Steps: Questions Patients and Families Can Ask Now

Even before any new law is passed, you can take proactive steps to ensure you understand the options around brain tumour tissue. This can feel overwhelming—especially at diagnosis—so consider bringing a trusted friend or family member to help take notes.

Key questions to ask your medical team:

  1. What will happen to the tumour tissue removed during surgery?
    Ask if it will be:
    • Used solely for diagnosis
    • Stored in a biobank or pathology archive
    • Eligible for research use
  2. Can more of the tissue be frozen and stored?
    Not all tissue can or should be stored, but ask:
    • Is there a facility here or nearby that can freeze and bank the tissue?
    • Can we consent for that to happen, if clinically feasible?
  3. Is there a brain tumour biobank or research study we can join?
    Many centres partner with national or regional biobanks. Ask:
    • Does your hospital participate in any brain tumour research networks?
    • What does consent involve, and can we withdraw later if we wish?
  4. Could stored tissue help with future personalised treatments?
    Your team may say:
    • “Possibly, but this remains experimental.”
    • “There are no available vaccine trials for your tumour type right now.”
    That honesty is important. Clarify that you understand there are no guarantees, but that you’d like to consider storage if it might open doors later.
  5. How will my privacy and data be protected?
    Ask how your samples are anonymised, who can access them, and whether you will be contacted about future studies.
Doctor and patient talking across a desk in a clinic setting
Bringing clear questions about tissue storage to your appointment can make difficult conversations more constructive.

Common Obstacles—and How to Navigate Them

Even with the best intentions, you may run into barriers when asking about tissue banking and research. Being prepared for these can reduce frustration.

1. “We don’t have that facility here.”

Some hospitals lack on-site biobanking or are not connected to major research networks.

  • Ask if tissue can be sent to a regional or national biobank.
  • Request information on any partner institutions that do store brain tumour samples.
  • Consider asking for a second opinion at a larger centre, if practical and advised.

2. “There’s no evidence this will help you personally.”

This statement is often true—and honest. But it doesn’t mean tissue storage is pointless.

  • Acknowledge that you understand there are no guarantees.
  • Clarify that you’re considering tissue storage for:
    • Potential future opportunities, if they arise, and
    • Contribution to broader research that may help others.

3. “You’re already dealing with so much—let’s keep this simple.”

Clinicians sometimes avoid complex topics out of concern for overwhelming patients.

  • It’s okay to say: “This is important to us. Can we schedule a separate conversation just about tissue and research?”
  • Involve a clinical nurse specialist or patient navigator who may have more time to talk.

How Parliamentary Action Could Change the Future

Ellie’s campaign has reached Westminster, where MPs and health leaders are considering how national policy could reduce the kind of regret her family experienced. While details will evolve, potential policy directions highlighted in public discussions include:

  • Making tissue banking the default, with opt-out options (and always with informed consent).
  • Setting national standards for how brain tumour tissue is collected, stored, and linked to data.
  • Dedicated funding to support NHS pathology departments and biobanks, so additional storage doesn’t overload already stretched teams.
  • Clear, accessible information materials for patients and families, co-designed with charities and people affected by brain tumours.
Legislators sitting in a parliamentary chamber debating health policy
Campaigns like Owain’s Law aim to turn personal tragedy into system-wide learning and better policy.

Any new law will take time, consultation, and careful drafting. But the spotlight on Owain’s story is already pressuring institutions to ask: Are we doing enough with the tumour tissue we remove every day?


Where to Find Reliable Information and Support

If you or someone you love is facing a brain tumour diagnosis, you don’t have to navigate this alone. Alongside your medical team, independent charities and support organisations can:

  • Help you prepare questions about surgery, tissue and trials
  • Offer emotional support and peer connection
  • Keep you updated on research and policy developments like Owain’s Law

Reputable starting points include:


Moving Forward: Turning Loss into Lasting Change

Owain’s Law is, at its heart, about dignity and informed choice. It cannot rewrite one family’s story, nor can it promise that frozen tumour tissue will lead to a lifesaving vaccine. But it can help ensure that:

  • No family later discovers, with shock, that important options were never discussed.
  • Precious brain tumour tissue is used as wisely and widely as possible.
  • Personal tragedies contribute to a collective push for better science and better care.

If you’re reading this amid your own brain tumour journey, know that it’s enough to take one small step at a time. That step might simply be writing down a question about tissue storage for your next appointment, or sharing Ellie and Owain’s story with someone who needs to hear it.

Change in medicine is rarely fast. But voices like Ellie’s—joined by patients, families, clinicians and researchers—do move the needle. By talking openly about what happens to brain tumour tissue, and by pushing for thoughtful laws and systems, we honour the lives already lost and build a more hopeful future for those yet to be diagnosed.

Hands holding a paper cut-out of a brain symbolising hope and research
Every brain tumour patient’s story, like Owain’s, can help shape a fairer, better-prepared system for the future.

If this resonates with you, consider:

  • Talking to your care team about tissue and research
  • Connecting with a brain tumour charity or support group
  • Following parliamentary debates and supporting evidence-based campaigns like Owain’s Law