Genomes, Feedback and Follow-On: The Long-Term Impact of Our Future Health

The latest PET (Progress Educational Trust) event examined the long-term impact of the Our Future Health research programme, focusing on participant feedback and follow-on.

This was the third event in a series looking at large-scale biomedical databases and research resources, produced by PET in partnership with Our Future Health. The event explored what information is necessary, desirable and appropriate to give participants about findings that relate to their genomes, as well as when and how it is appropriate to recontact participants – for example, to offer them the opportunity to take part in further studies.

Sarah Norcross, director of PET, opened the discussion by highlighting the event's timeliness. She cited recent comments from the UK health secretary Wes Streeting concerning preventive, personalised care (see BioNews 1294), and new research that uses data from Our Future Health (see BioNews 1295). She then introduced the first speaker, Professor Sir John Bell – chair of trustees at Our Future Health, president of the Ellison Institute of Technology and chair of the Gates Foundation's scientific advisory committee.

Professor Bell highlighted the impact that Our Future Health is likely to have not only on the NHS, but also on global society more generally. He said that the Our Future Health dataset now includes enough participants for researchers to explore how prevention, early diagnosis, and intervention can help to flatten the morbidity curve for major chronic diseases including heart disease, stroke, obesity and diabetes.

The next phase of Our Future Health will explore how new therapeutic tools could be used to manage disease before symptoms emerge. With 2.5 million participants so far, and an ambition to recruit five million (see BioNews 1165), Professor Bell said the data from the programme could ultimately lead to extended healthspans (as distinct from lifespans), could enable earlier disease diagnosis (such as detecting cancer at stages 1 or 2), and could lead to transformations in healthcare delivery and a more sustainable NHS.

The second speaker, Dr Cosima Gretton – executive director of digital health and deputy chief medical officer at Our Future Health – outlined the programme's purpose, goals and long-term vision to improve global health outcomes. She argued there is too great an emphasis on understanding diagnosis and treating late-stage disease at the moment, with around 50 percent of cancer diagnoses taking place in A&E. The ambition is for Our Future Health to be a research platform enabling the development of evidence that will generate a new model of care centred around precision public health.

Dr Gretton explained that the next phase of Our Future Health will focus on continued recruitment and expanding opportunities for participants to join additional research studies. Our Future Health will offer new, population-level health insights by drawing upon measurements taken at appointments and responses to questionnaires. Participants may also be able to find out more about their risk of disease, offered as feedback during the course of additional research studies.

The third speaker of the evening was Nicola Perrin, chief executive of the Association of Medical Research Charities and member of the UK Health Data Research Alliance executive committee. She talked about charity partnerships with Our Future Health, including four funding partner charities – Asthma and Lung UK, British Heart Foundation, Cancer Research UK and LifeArc – as well as 20 affiliated partner charities.

Perrin outlined these charities' interests in Our Future Health, including early cancer detection, clinical trial recruitment, and risk score development. She emphasised the importance of follow-on and feedback, noting that Our Future Health could help to identify valuable subgroups for research, for example smokers who don't develop chronic obstructive pulmonary disease (COPD).

Perrin highlighted the challenges of recontacting participants and delivering potentially life-changing feedback, such as high dementia risk, amid concerns about the validity of polygenic risk scores – especially in relation to lack of diversity in the datasets used to create them (see BioNews 1293, 1131 and 1130). She argued that Our Future Health offers a chance to set a gold standard for participant feedback in large-scale studies.

The fourth speaker was Professor Michael Parker – director of the Ethox Centre and of the Global Health Bioethics Network, and chair of the ethics advisory board of Our Future Health – who discussed the link between feedback policies, ethical considerations, and scientific trust. He emphasised the importance of different types of feedback, noting that participants in such large-scale genomics projects can feel frustrated by delays in updates about scientific progress and sample use. They want ongoing communication about the project as a whole, not just health-related feedback.

One approch involves carefully testing new approaches to feedback, as it is increasingly seen as unacceptable to provide no feedback whatsoever to participants. Professor Parker discussed shifting expectations, the evolving relationship between health and research, and the scale of Our Future Health – largely taxpayer-funded, and now involving around ten percent of England's population – which in turn raises questions about its responsibilities. He stressed the importance of setting expectations early and keeping the consent process ongoing to maintain trust, especially given this project's long running time. He also highlighted a key ethical challenge, namely the opportunity cost of feedback – how much time, money, and effort should be devoted to providing it, rather than other research priorities?

The fifth speaker, Dr Geoffrey Ginsburg – chief medical and scientific officer of the US National Institutes of Health's All of Us programme and adjunct professor at Duke University, North Carolina – discussed the progess of All of Us, and its parallels with Our Future Health. Aiming to accelerate research and reduce healthcare costs, All of Us has now gathered data from more than 862,000 participants spanning all 50 states, representing 98 percent of US ZIP code areas. Like Our Future Health, the project seeks to create a research platform to drive innovation. Dr Ginsburg emphasised the importance of returning value to participants through feedback, contributing to trust and engagement.

He detailed the types of data collected – biosamples, electronic health records, and surveys – and the four categories of genetic results shared with participants: ancestry, traits (such as lactose intolerance), hereditary disease risk (covering 59 genes linked to serious conditions), and pharmacogenomics (exploring how genes affect medication response). Notably, three percent of participants received a potentially life-changing disease risk result, and 90 percent of participants had at least one variant affecting interaction with a common medication. Dr Ginsburg underscored the lessons learned when giving feedback, such as the importance of clear digital opt-in processes, and access to genetic counselling in building trust.

The talks concluded with a wide-ranging Q&A covering topics such as the usefulness of polygenic risk scores at individual vs population levels, and the relative impact of genetics versus lifestyle on disease prevention and resource allocation. Questions were raised about how participants will be supported in interpreting small risk differences, how their data and samples are used, and the challenge of trying to use health information to encourage behaviour change.

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