Protecting genomic data and earning public trust
By Kirsty Irvine on
In this blog, Kirsty Irvine, Chair of the Participant Panel at Genomics England, talks about the importance of participant involvement in data governance, and why National Patient Data Day is relevant for everyone.
The rise of genomic data
National Patient Data Day matters to all of us.
Every single person in the UK generates health data, from GP appointments and blood tests, to hospital scans and screening programmes, information about our health helps the NHS to deliver care and improve.
And now, genomic data is becoming a significant part of this too.
The role of genomic data in healthcare is only set to grow. The government’s 10 Year Health Plan predicts that by 2035, up to half of healthcare interactions could involve genomics. The plan also outlines ambitions for universal newborn genomic testing and a unified genomic record.
This shift has huge potential. Earlier diagnoses, more personalised treatment, and better prevention could improve millions of lives. But none of this works without trust.
That’s why patient and participant voices must remain central to how genomic data is governed, protected, and used.
Trust is not automatic
Genomic data is deeply personal. It can reveal information not only about us, but also about our biological relatives and future generations. People deserve to be confident that their data will be handled thoughtfully and ethically.
Because of this, Genomics England has built systems designed to protect participant data.
For example, data stored in the National Genomic Research Library can only be accessed by approved researchers through the secure, highly controlled Research Environment.
Researchers cannot simply download and export sensitive information, they have to use a process called airlock, in which strict checks take place before anything leaves the environment. This helps reduce the risk of data being misused, while still enabling important research.
These technical safeguards are vital, but public trust goes beyond technology.
People need to understand why their data is used, who benefits, and how decisions are made. They also need reassurance that organisations will listen when concerns are raised, and involve participants in shaping policies.
Beyond the technology
As genomics becomes a bigger part of mainstream healthcare, strong governance will matter more than ever.
Decisions about data access, commercial partnerships, research priorities, and consent cannot happen without the people whose data makes research possible.
The early years of genomic medicine often involved people facing serious health challenges. For example, the 100,000 Genomes Project sequenced the genomes of around 85,000 participants affected by rare conditions and cancer. Many of whom may have joined hoping to get answers for themselves or their families.
However, as genomics expands to the wider population, studies like the Generation Study which involves sequencing the genomes of newborn babies, represent an important next step.
But this also changes things. Someone who is not looking for answers or treatments may understandably ask: “Why should I take part?” or “What happens to my data in the future?”
Building trust with the wider population cannot rely on assumptions that people will automatically support data sharing. Trust must be earned continuously, through transparency, accountability, and meaningful participant involvement.
Why participant voices matter
The Participant Panel at Genomics England keeps participant’s voices at the heart of decision-making. We are not there simply to observe; we challenge, question, and contribute.
The Panel is made up of participants, parents, and family members with lived experience across rare conditions, cancer, and other areas of genomic medicine. We advocate for everyone whose data sits within the National Genomic Research Library, both now and in the future, which becomes even more important as genomic medicine expands to the wider population.
The Participant Panel works across many areas of Genomics England, including data access, ethics, communications, participant experience, and future strategy. We bring perspectives that might otherwise be missed.
I am encouraged by the growing recognition in the sector that participant involvement cannot be treated as a “nice to have.” Public involvement brings real-world perspectives into discussions that could otherwise become too technical or disconnected from public expectations.
There is also increasing collaboration between organisations working in this space. Groups such as useMYdata have long championed the idea that patient data should be used responsibly to improve care and save lives, while always respecting privacy and public expectations.
That wider movement matters, because no single organisation can build public confidence alone.
Part of the bigger picture
People may think that genomic data exists separately from the rest of the NHS. In reality, it forms part of a broader health data ecosystem.
Genomics England works alongside the Department of Health and Social Care, NHS England, the NHS Genomic Medicine Service, researchers, clinicians, and patient organisations. Genomic data is often combined with clinical information to help researchers understand patterns of disease and treatment outcomes.
This approach creates enormous opportunities for research and care, but it also highlights why strong governance matters.
People should not need expert knowledge to understand how their data is used. Clear communication, public dialogue, and independent oversight are essential. Good data governance cannot happen behind closed doors. Public trust depends on participants having a meaningful role in the decisions that shape how genomic data is collected, accessed, and used.
National Patient Data Day offers an important reminder that health data is not abstract. Behind every dataset is a real person, family, or community.
For anyone interested in learning more about responsible health data use, organisations such as useMYdata provide valuable information and resources. You can also learn more about the Genomics England Participant Panel and how participant voices help shape the future of genomic medicine.
