Genomic Transformation Project: Community Engagement

This report presents the findings of a public engagement project commissioned by the Eastern England Secure Data Environment (EE-SDE) to explore public views on the use of genomic data from routine NHS testing for research purposes. The project was delivered by Healthwatch Norfolk, Healthwatch Essex, Healthwatch Hertfordshire, and Healthwatch Leicester and Leicestershire between February and March 2026. A total of 85 people participated through nine focus groups and a one-day public panel. 

The project was undertaken because advances in genomic medicine offer significant opportunities to improve diagnosis, treatment and research, but the use of genomic data raises important questions about privacy, consent and trust. Participants were asked for their views on whether genomic data should be available for research within a secure data environment and whether this should operate through an opt-out or explicit consent model. 

Overall, participants were broadly supportive of using genomic data for health research because they believed it could improve care, advance medical knowledge, support the development of new treatments, and benefit future generations. There was particularly strong support from people with personal experience of cancer, rare diseases, or genetic conditions, who often saw the potential benefits as outweighing the risks. 

However, support was conditional on several key requirements. Participants consistently emphasised the need for strong security measures, transparency about how data would be used, clear communication with the public, and meaningful opportunities for people to exercise choice and control over their data.

Public awareness of genomics and the EE-SDE was generally low. While many participants were familiar with terms such as DNA or genetic testing, fewer understood genomic testing in detail and very few knew about secure data environments or existing arrangements for sharing NHS data for research. Many participants were surprised to learn that NHS health data is already shared under an opt-out model and felt that awareness of this process is poor. 

Participants viewed genomic data as more sensitive than other forms of health data because it is unique to an individual and can reveal information about family members. Raw genomic sequence data, which contains extensive DNA information, was seen as particularly sensitive compared with clinical genomic reports. Although participants did not oppose its use, they felt stronger safeguards and additional public discussion would be needed before expanding access to this type of data. 

Concerns about data security and trust were prominent throughout the engagement. Participants worried about data breaches, cyber-attacks, misuse of information and the possibility of individuals being identified from datasets, especially where research involved small groups of people affected by rare conditions. Despite these concerns, most participants felt the safeguards explained by experts were reassuring and considered robust security arrangements essential for maintaining public confidence.

Trust in organisations varied considerably. Participants generally trusted the NHS and public sector organisations to manage data responsibly but expressed much lower levels of trust in commercial companies, insurance firms, technology companies, employers and politicians. They felt any future research invitations should come through trusted NHS organisations or healthcare professionals rather than directly from researchers or third parties.

The public panel ultimately concluded that both clinical genomic report data and raw genomic sequencing data could be used for health research within the EE-SDE under the current opt-out system, provided strong safeguards remain in place. Participants were more comfortable with clinical report data because it was viewed as similar to other health data already used in research, while raw genomic data was considered more sensitive and deserving of further engagement and scrutiny. 

A major theme throughout the project was the need for better communication. Participants wanted clear, accessible information explaining what genomic data is, how it is used, who can access it, what safeguards exist, and how people can opt out if they choose. They also wanted greater transparency about research projects that use genomic data and information about the benefits that result from such research.

The report recommends improving public awareness of genomics and the EE-SDE, strengthening transparency about data use, making opt-out processes clearer and easier to understand, maintaining robust data security measures, using trusted communication channels, recognising the unique sensitivity of genomic data, and continuing to involve patients and the public in the governance and development of the programme

In conclusion, the engagement found broad public support for the use of genomic data in research, provided that privacy, transparency, security and public choice remain central to the programme. The findings suggest that public trust can be maintained through ongoing communication, strong safeguards and meaningful involvement of patients and the public in future decision-making.