Participant newsletter 2024/25: Insights
Our global research community
Hear from researchers around the world on how they are using your data in different ways to make scientific breakthroughs.
Christophe Stevens, Imperial College London, UK
Software engineer Christophe Stevens uses participants’ genetic data to create an algorithm that could help doctors to spot familial hypercholesterolemia – a genetic high cholesterol condition that goes undiagnosed in around 85% of people who have it.
Stevens was the first PhD student to receive financial support from UK Biobank to analyse its data. “This was quite important to have because I was not funded by any kind of funding body.”
Rafaella Rogatto de Faria, University of São Paulo, Brazil
Biomechanics specialist Rafaella Rogatto de Faria uses UK Biobank data to find out what role genes play in cartilage injuries and osteoarthritis, and whether different people would benefit from different treatments.
UK Biobank grants reduce financial barriers in lower-income countries: “UK Biobank takes proactive action to ensure that talent and innovation are not restricted but encouraged.”
Kezia Irene, Kalbe Farma, Indonesia
Kezia Irene, a bioinformatics scientist at Indonesia’s largest pharmaceutical company, is working on understanding the role that genes play in obesity.
“Our aim is to use UK Biobank data, especially those of the Asian populations, to validate our findings for Indonesian populations.” Eventually, she wants to develop personalised recommendations for how to best treat obesity.
Javier Calvo Marín, University of Costa Rica
Javier Calvo Marín’s work focuses on hormone-related conditions. He studies biomolecules found in UK Biobank participants’ blood to explore cardiovascular risk.
Ultimately, he wants to use these insights to give his patients practical recommendations for staying healthy later in life. He says “UK Biobank’s accessibility, high-quality data and global collaborative environment were game changers.”
Keri Multerer, Victoria University of Wellington, New Zealand
After staying home with her children for 15 years, data scientist Keri Multerer taught herself coding and became a researcher.
She is now using UK Biobank data to explore how genetic factors combine in determining someone’s risk for diseases such as diabetes. Multerer says the Early Career Researcher Credits she received from UK Biobank “was fantastic to have, because as an early-career researcher, you don’t know what tools you’re going to need.”
Top left to right: Javier Calvo Marin, Rafaella Rogatto de Faria
Bottom left to right: Kezia Irene, Christophe Stevens, Keri Multerer
Your agreement with UK Biobank
When you became a participant many years ago, you made an important and generous agreement with UK Biobank. You gave us permission to:
- access your medical and other health-related records
- store your blood and urine samples long-term
- re-contact you to ask you further questions about your health and invite you to come back for further assessment visits
- use and store this information about you for health-related research in the public interest, even after your incapacity or death.
In return, we agreed to protect your confidentiality and make your data available for ground-breaking health research for the benefit of future generations. You can withdraw your permission for any reason at any time.
Protecting your confidentiality
We know that information about your health and lifestyle is personal and private to you. Information that identifies you – for example, your name, address and NHS number – is never shared with researchers.
We know some of you may be worried about cyberattacks. We are certified to an internationally recognised standard for information security, as well as through a national-level cyber security scheme. This means our people, policies and technology adhere to robust industry standards for data security and we continually update our approach to ensure that your data is protected.
Who can access your data?
Your de-identified data are shared only with approved researchers for health-related research that is in the public interest.
Researchers must work for a credible research organisation. We perform background checks and look at the kind of research they have done in the past. The research they want to do should benefit the health and wellbeing of society and not cause harm. If the application raises any concerns, it is referred to our expert Access Committee, which can consult our Ethics Advisory Committee and Participant Advisory Group.
We used to treat the few researchers applying from insurance companies like other commercial or academic researchers as they may conduct valid health-related research, for example if assessing the risk of disease. However, the Access Committee reviewed this policy and in January 2025, following input from our Participant Advisory Group and Ethics Advisory Committee, decided that applications from insurance companies will no longer be approved.
You can read more about the vetting process and change in policy on our Apply for access page.
When researchers have finished their projects, they must make their findings available to the scientific community, and return their underlying results to UK Biobank. This openness is a cornerstone of scientific progress.
Meet the team
The UK Biobank team has doubled in size in the last five years! We now have 300 colleagues working in Manchester, Oxford, Bristol, London, Newcastle and Reading. Meet some of the faces at UK Biobank.
Adunola, Head of Finance, Manchester
"I lead UK Biobank’s finance team. This involves exploring opportunities to reduce costs, improve our financial performance, and providing expert financial advice to other staff across the whole organisation.
Working for UK Biobank is important to me. I am mindful of the role well-funded science and research can play in advancing and improving healthcare and medicine.
When my finance hat isn’t on, I enjoying working with children and have taught Sunday school for over 15 years."
Megan, Epidemiologist, Oxford
"I support researchers to access UK Biobank data alongside conducting my own research. I joined UK Biobank as I was excited to work with an organisation that is aiming to improve the health of the population.
I particularly enjoy meeting and talking to participants about how their data is being used; they always ask the best questions and help us to think outside the box.
Outside of work, I spend most of my time running after my two boys and baking."
Stephen, Participant Resource Centre Advisor, Manchester
"I really enjoy interacting with participants over the phone and via email.
Our participants are doing a truly wonderful thing for the future.
In my spare time, I help family and friends with DIY projects, enhancing skills whilst helping others."
Willow, Radiographer, Bristol Imaging Centre
"Joining UK Biobank was an exciting job opportunity unlike any I had seen before.
My role involves performing the four different scans, as well as team management. The shift pattern gives me a great work life balance.
In my free time I enjoy swimming and going for walks with my cockapoo Marmite."
Top left to right: Adunola and Megan
Bottom left to right: Stephen and Willow
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