Interview with Dr Alison Parry-Jones, Operations Director of Wales Cancer Bank

Dr Alison Parry-Jones with the UKCRC TDCC 2020 UK Biobank of the Year Award.
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For this article, interviewed Alison Parry-Jones (BSc, MA, PhD, MRSC), the Operations Director of the Wales Cancer Bank (WCB). She is responsible for the day to day running of the biobank and is based at the University Hospital of Wales in Cardiff. She is the Designated Individual on the WCB licence issued by the Human Tissue Authority and is therefore responsible for governance and compliance across all WCB sites in Wales. She has extensive project management experience in academia and is a PRINCE2 registered practitioner. Her background is in analytical chemistry and before moving into project management she worked in bioanalytical laboratories specialising in phase I and II clinical research. Her interest in the legal and ethics issues within biobanking led her to complete an MA in Medical Ethics and Law in 2012.

She is the Director-at-Large for the Europe, Middle East and Africa region for the International Society for Biological and Environmental Repositories (ISBER) and is a member of an American Society of Clinical Pathology Board of Certification working group that recently developed an international Qualification in Biorepository Science online examination. She is a member of the Steering committee for the UKCRC Tissue Directory and Coordination Centre and is a member of the Marble Arch international biobank leader’s group.

Congratulations on winning the UKCRC TDCC 2020 UK Biobank of the Year Award! Can you tell us about your journey as the Operations Director, Wales Cancer bank so far?

Thank you! I’ve been with the Wales Cancer Bank since its inception in 2004 and have had the privilege, firstly as the Manger and latterly as the Operations Director, to help build, develop and navigate the biobank through 15 years of operation. The first patient was consented in 2005 and cancer patients in Wales have continued to generously donate their time, samples and data to the biobank for future research. My background is not in cancer or even biological sciences – my degree and PhD are in Chemistry, so it was a very steep learning curve when I first started. I went on to develop an interest in the ethics and legal issues in biobanking which led me to do an MA in Medical Ethics and Law in 2012. I’ve become more involved in national and international biobanking networks and I’m now the Director-at-Large for ISBER for the Europe, Middle East and Africa region.

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According to you, what factors contributed towards getting this prestigious award?

The award is great recognition of the dedication of the Wales Cancer Bank team, especially over the last year. It has been a challenging year with audits, an HTA inspection, applying for funding to continue the biobank and then COVID! The team has been magnificent throughout, being flexible and willing to help out with whatever needed doing.

The judging panel mentioned our flexibility to amend our ethics to be able to supply serum samples to act as a negative control for COVID related work over the lockdown. An application to ethics was needed to amend our release approval to include supplying samples for Public Health Emergency research. Samples were chosen carefully to make sure that future cancer related research would not be adversely affected and only donations with at least two other serum samples in the biobank archive were used.

TMA histology Twister

Our public engagement activity was also mentioned. Three weeks before lockdown we had taken part in an event in Techniquest in Cardiff. The public seemed to really enjoy looking down the microscope at tumour samples and the explanations given by the pathologist. But the most fun seemed to be with our ‘TMA histology Twister’! Although spending the evening calling ‘left hand on colon’ did raise a few eyebrows. The public are very interested in the work of a biobank – an interesting recurring reaction when we mention asking for consent is a genuine disbelief that it is necessary as the assumption is that research would naturally be done on any surplus samples as a matter of routine.

How has biospecimen banking as a field changed over the years since you took started at the Wales Cancer bank?

Biobanking as a discipline and science has evolved enormously and I’m pleased to say that the WCB has been at the forefront of that progress in the UK. It has certainly become recognized as a valuable part of the research pipeline and there is now a lot more focus on the importance of sample quality and provenance for research reproducibility. The importance of data to ensure well annotated samples has always been known but the growing depth of information that is now available with, for example molecular and genomic data, gives opportunities for biobanks to be able to supply well characterized samples for increasingly focused research questions. The amount and complexity of data that biobanks need to handle has therefore increased over the last 10 years. This provides challenges but the science has shown that it is vital to document details, such as pre-analytical variables,as these can impact tremendously on research results and outcomes. We have learned that samples do not have to be ‘gold standard’ quality but the quality has to be known to ensure samples are fit for the intended analysis. The knowledge and expertise of biobanking personnel is now appreciated as an integral component of the biobank and the growing suite of educational resources and qualifications aimed at biobank staff supports the recognition of the field as a discipline and career option.

How has COVID-19 impacted the functioning and priorities of the Wales Cancer bank?

Along with many other biobanks we effectively closed down at the time of lockdown. Our clinical staff were diverted to frontline COVID activities and our university staff were diverted to work from home. Cancer clinics were reorganized, relocated or provided remotely so we had the best part of six months unable to consent any patients and therefore collect any samples. During this time, we continued to receive applications for samples. In fact, the number of applications received was over double the number received in the same period in 2019. It seems that researchers unable to be in their labs were busy writing applications for samples instead! Activity, albeit in a reduced capacity, started again in September with staff back onsite on a rota system to ensure social distancing. Now that researchers are also back in their labs, we’ve been catching up with sample supply to those projects that were suspended back in March.

Where do you see the future of the biobanking industry in the next 5-10 years?

Good question! I believe strongly that biobanks are invaluable research resources that support research communities and that the infrastructure needs appropriate support and development in the UK so that research can be well supported. Good integration is going to be key, especially around data. A lot of resource, both time and money are given to data capture and sample annotation. A more ‘joined up’ approach would benefit the industry hugely and I think this is becoming more recognized and hope that this is where we might find ourselves in 5-10 years. Most biobanks struggle with sustainability – it is an aspiration that is increasingly encouraged yet the current landscape, funding and structure of biobanking is divergent with that ambition. I would like to see a change in thinking to approach biobanking in a truly professional, more business-like manner – this does not have to challenge the academic heart of many biobanks, instead it could augment and strengthen them. Networked biobanks with harmonization of standards and co-ordinated access policies and systems would benefit the research community in their quest for samples. We have to remember that biobanks exist to support research and anything that can be done to streamline that process and expedite research to eventually benefit patients should be the ultimate aim for the future.