Public back genomics for prevention and personalised healthcare, with trust and transparency essential
People across England are supportive of using genomics to help prevent illness and personalise healthcare, but say future programmes must be built on trust, fairness and transparency, as well as limiting the burden on the NHS, according to a major national engagement programme commissioned by Genomics England.
Genomics, Healthcare and You, explored views from more than 300 people on how genomic information could be used as part of routine healthcare in the future. Through structured conversations designed to help people discuss the issues in detail, it brought together insights from members of the public across England, communities that are often underrepresented in genomics research, and healthcare professionals.
Participants were optimistic about the potential of genomics to support prevention, earlier intervention and more personalised healthcare. However, support was not unconditional. Across the programme, people consistently emphasised that any future use of genomic information must be evidence-based, equitable, transparent and delivered through a healthcare system that is equipped to use it safely and effectively.
Trust emerged as the strongest and most consistent theme throughout the programme. Members of the public wanted reassurance that genomic information would be used responsibly, that robust safeguards would be in place around data access and governance, and that decisions about the use of genomic information would be made transparently. They also stressed the importance of ensuring the benefits of genomics are shared fairly across society.
Conversations frequently focused on genomics in the context of people’s wider experiences of healthcare, highlighting NHS capacity, health inequalities and confidence in public institutions as important factors influencing support. They emphasised the need for inclusive research, accessible communications, culturally appropriate engagement and a commitment to addressing health inequalities from the outset.
Healthcare professionals who took part in the programme shared many of the public's aspirations for genomics, particularly its potential to support prevention and earlier intervention. However, they stressed that wider adoption would require healthcare services, infrastructure and workforce skills to be ready to support implementation.
Among the potential uses discussed, pharmacogenomics attracted particularly strong support. Many participants saw value in using genomic information to help identify which medicines are likely to work best for different people and reduce the risk of adverse reactions.
"The findings show that people recognise the potential for genomics to transform healthcare, particularly in supporting earlier intervention and prevention. But they also remind us that trust must be earned.
"People want transparency, robust safeguards and confidence that genomic information will be used responsibly. They want to know that the benefits of genomics will be shared fairly across society and that the NHS is ready to deliver on its promise.
"These insights will play an important role in shaping our future work, helping ensure that public perspectives remain at the heart of how genomics is developed and used in healthcare."
Professor Rich Scott
Chief Executive Officer of Genomics England
"One of the clearest messages from the engagement was that people want to be part of the conversation about how genomics is used in healthcare.
“Participants talked about a future where genomic information could help prevent illness, support earlier diagnosis and enable more personalised approaches to care.
"They were equally clear that realising those benefits will require careful planning, meaningful public involvement and a commitment to fairness.
"Continuing to listen to patients, participants and communities, and showing how their input is influencing future plans, will be essential as this work develops."
Dr Natalie Banner
Chief Ethics and Engagement Officer at Genomics England
"The insights from this programme provide an important evidence base for the future development of genomic healthcare. They give us a deeper understanding of the opportunities people see in genomics, as well as the conditions that need to be in place for its wider use in healthcare.
Alongside scientific and clinical evidence, these findings will help inform future research and ensure that the development of genomic healthcare remains grounded in the needs and expectations of the public."
Professor Bill Newman
Professor of Translational Genomic Medicine at the University of Manchester
“Genomic healthcare has huge potential to help us prevent illness, detect disease earlier and give patients more personalised care, but people must have confidence in how their information is used.
“That is why we are working to ensure the development of genomics is built on trust, transparency and strong safeguards, while making sure the benefits are shared fairly across communities and the NHS is ready to deliver them.
“We will continue listening to patients and healthcare professionals as this work develops, using their views alongside the scientific and clinical evidence to help shape the future of genomic healthcare.”
James Frith
Health Innovation Minister
“Genomics has huge potential to transform how the NHS prevents, diagnoses and treats illness and to offer patients more personalised care.
“These findings show people want to see those benefits, while rightly expecting us to earn and maintain their trust, reduce inequalities and protect their data – and these insights will help us ensure patients across the country can benefit from genomic and personalised care.”
Professor Dame Sue Hill
Chief Scientific Officer for England and Senior Responsible Officer for Genomics in the NHS
The programme was launched in October 2025 and delivered in partnership with expert engagement organisations and community partners. It was designed to ensure that public and professional perspectives help inform future decisions about the role of genomics in healthcare from the earliest stages of development.
The findings will be used alongside scientific, clinical, operational and ethical evidence to inform the design of a Genomics England-led adult population genomics research study. The study, outlined in the Government's 10 Year Health Plan for England and the Life Sciences Sector Plan, is expected to recruit up to 150,000 adults to generate evidence on how genomics could support earlier detection of disease, prevention and more personalised care.
Genomics England will continue to engage with patients, communities, healthcare professionals and partner organisations as work on the research study develops and will publish updates on how the insights from Genomics, Healthcare and You are informing future plans.
