Our Future Health, UK Biobank, Genomics England: Exploring the Impact

The most recent PET (Progress Educational Trust) event explored the impact and interplay of three major UK-based genomics and population health research initiatives.

The event – 'Our Future Health, UK Biobank, Genomics England: Exploring the Impact' – was produced by PET in partnership with Our Future Health, and is the first of three in a series of events exploring large-scale biomedical databases and research resources. Representatives of each organisation explored the aims, impact and future opportunities – in relation to healthcare, research and the community – of their genomics projects.

Sarah Norcross, director of PET, provided a brief overview of each organisation and then introduced the first speaker, Professor Dame Sue Hill. Professor Hill is chief scientific officer for England and senior responsible officer for genomics at NHS England, where she has led the establishment of the NHS genomic medicine service (see BioNews 957, 970 and 1163).

Professor Hill outlined the infrastructure of the NHS genomic medicine service, launched in 2018 with the aim of offering whole genome sequencing (WGS) in routine care. Its seven clinical innovation hubs support the entire process from testing through to analysis. For example, they provide prenatal diagnosis for 7000 rare diseases, support 2000 cancer clinical indications, conduct pharmacogenomic testing to understand the role of genomics in drug response and initiate precision medicine.

Professor Hill emphasised the UK's strengths in research and innovation, and the importance of partnerships between the NHS and the other organisations represented on the speaker panel. When combined with the NHS's longitudinal data, these collaborations enable large-scale integration of genomics into healthcare. Professor Hill explained how evidence taken from disease-based studies can 'drive change in terms of end-to-end clinical pathways'.

The next speaker, Dr Adam Lewandowski, deputy chief scientist at UK Biobank, began by outlining the history of his organisation and noted that it is the oldest of the three. Launched in 2006 (see BioNews 156, 227, 342 and 350), UK Biobank recruited 500,000 participants between 40-69 years old across 22 centres, collecting biological samples, lifestyle questionnaires, and physiological measurements.

Primarily established for research, UK Biobank has been highly successful. More than 20,000 researchers globally have accessed the data, resulting in 15,000 published papers so far. Dr Lewandowski highlighted a study involving around 50,000 participants, that combined WGS with cardiac MRI – the study showed that WGS can predict the morphology of the heart's ventricles, identifying 43 loci linked to structural variations and defining 15 new cardiac traits. Now with a median age of 73 years and the prevalence of disease increasing, Dr Lewandowski highlighted that UK Biobank has the opportunity to carry out extended assays on stored biological samples.

Third, Chris Schonewald, chief of staff and director of strategy at Genomics England, was introduced. He began by describing Genomics England's timeline so far: founded in 2013 with the launch of the 100,000 Genomes Project (see BioNews 765, 785 and 794), which reached its goal by 2018 (see BioNews 979). Following this success, the Generation Study was launched (see BioNews 1103, 1210 and 1213), with its first genomes sequenced in 2024 (see BioNews 1259 and 1261). Genomics England works closely with the NHS to deliver WGS and return clinical results, particularly for rare diseases and cancer, to provide genomics-driven diagnostics and patient care.

A notable success of the 100,000 Genomes Project – referenced to by both Schonewald and Professor Hill – was the discovery of an association between variants in the noncoding gene RNU4-2 and a neurodevelopmental syndrome (see BioNews 1264). Within months this was added to the sequencing directory, enabling molecular diagnoses for affected people. Schonewald described Genomics England's operation as an infinity loop, delivering better health while supporting world-leading research. Ultimately, the organisation's vision is to apply genomics across the patient lifetime for more predictive and preventative care.

The last speaker of the event was Dr Raghib Ali, chief executive and chief medical officer at Our Future Health. Launched in 2022, Our Future Health is the newest organisation and it seeks to recruit five million participants, ensuring a diverse and representative UK population (see BioNews 1165).

Dr Ali highlighted the 'unprecedented response by the UK', with more than three million currently registered. This has been made possible by establishing 400 venues across the UK, enabling most people to access a registration site within five miles of their home.

Our Future Health aims to build a new model of care by integrating participant data with NHS data. Dr Ali explained that while the current system treats symptomatic disease, often at later stages of life, the programme seeks to transform this approach. He and his colleagues wish to provide risk prediction, health screening, early diagnosis and early intervention for presymptomatic disease.

The event concluded with an engaging Q&A session. One attendee asked whether participants can be involved in more than one of the genomic projects. Dr Lewandowski and Dr Ali acknowledged that ideally each study should be conducted independently, but people should be supported in their decision to participate in whichever project(s) they wish to join. Dr Ali suggested that the participant overlap in relation to Our Future Health is expected to be quite small – around five percent – and to have only a minimal impact.

In response to a later question about duplication of data, Dr Ali confirmed that Our Future Health meets regularly with NHS England and UK Biobank to coordinate efforts. Matters are expected to become easier in future, when individuals across cohorts will be identifiable by their NHS number.

Another audience member raised concerns about exacerbating health inequalities through increased use of genomic medicine. Schonewald explained that extensive user research was carried out when designing the Generation Study with Genomics England, to ensure that the needs of all communities were taken into account. Professor Hill added that the NHS has established a legal, ethical and equity board for genomics, that aims to better understand the barriers which prevent some individuals from accessing tests. Schonewald observed that wealthier nations will tend to dominate in genomics, underscoring the need for multiple inclusive projects that can address health inequalities.

After hearing from all of the panelists, it was clear that Our Future Health, UK Biobank and Genomics England have at least one goal in common – reshaping the future landscape of medical care for the better, through the integration of genomics. It was particularly evident that when it comes to positioning the UK as a global leader in genomics-driven medicine, the NHS is a pivotal institution.

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PET is grateful to Our Future Health for supporting this event.

Register for these upcoming PET events:

• Robert Edwards at 100: Remembering an IVF Visionary, taking place online on Wednesday 24 September 2025 – register here.
• Mitochondrial Donation: Does It Work? What Next?, taking place online on Wednesday 8 October 2025 – register here.
• Rare Disease Genomic Testing: How Do We Make Access Equitable and Timely?, taking place online on Wednesday 22 October 2025 – register here.
• What Does Genomics Mean for Fertility Treatment?, the PET Annual Conference, taking place in person in London on Wednesday 10 December 2025 – register here.