People across the East of England have shared their views on the use of genomic data for health research, recognising its potential to transform diagnosis, treatment and care, in a new report published by local Healthwatch.
Genomic medicine is the study of how the information contained within a person’s DNA influences their health. This unique information can help identify if someone is at risk of certain diseases and how they might respond to treatment. Advances in genomics science are transforming healthcare, by enabling more accurate diagnosis of conditions and supporting more personalised treatment approaches.
Gathering views
Healthwatch Norfolk was commissioned by Health Innovation East to work alongside Healthwatch Leicester and Leicestershire, Healthwatch Hertfordshire and Healthwatch Essex to explore people’s views on the use of DNA data from routine health tests for research within the Eastern England Secure Data Environment (EE-SDE). An SDE is a highly-protected digital platform that allows approved researchers to access sensitive health data securely, ensuring patient confidentiality.
Currently, genomic data used in research relies on opt-in consent, which limits how much data is available. Elsewhere, the NHS uses has an opt‑out model for gathering health data for research – and a shift towards this system for genomic research in an SDE would allow much more data to be looked at. This in turn could enable faster, more impactful research.
The Healthwatch report, Genomic Transformation Project: Community Engagement, captures the views of 85 patients and members of the public, gathered through focus groups and a regional public panel. It explores attitudes towards the use of genomic data within the EE-SDE and the consent around the use of that data.
What did people tell us?
We found that public support for using genomic data in research is strong, with most participants appreciating the benefits – particularly in improving outcomes for cancer and rare diseases and advancing medical breakthroughs.
However, that support depends on trust, security and transparency, with many noting they would want to see robust data protection in place and clear information about consent and how their data is being used.
Many of those we spoke to had limited knowledge of how genomic data is used in research and were unfamiliar with SDEs prior to their involvement with this project. There was a firm belief that genomic data is more sensitive than other types of health information, because of its unique connection to each individual and its capacity to reveal information about family members. As a result, most people said they were comfortable with their data being handled by trusted NHS organisations, as opposed to commercial and external bodies. This view extended to how patients would wish to be contacted about the subject, with participants telling us they would prefer any future communication about research to come through recognised NHS channels, such as GPs or hospitals.
When it came to consent, the current opt-out model for NHS data was largely accepted by people, but this acceptance depends on people being clearly informed about the existence of that system and how patients can opt out if they choose to do so.
Moving forwards
Across the board, our research revealed the need for better communication and greater transparency around genomic data research, with clear explanations of how patient data is used, who has access to it and updates on what that research has achieved.
In response to these findings we have made a series of recommendations, including increasing public awareness of genomic data use, making opt-out options clearer and easier to access, using trusted NHS communications channels and ensuring that robust data security and governance is in place and demonstrated to patients.
Our findings show that there is clear public support for the use of genomic data in health research, however this support is not unconditional. It depends on maintaining public trust through strong safeguards and transparent processes. Prioritising openness, strengthening awareness, and continuing to involve patients in decision-making can ensure that genomic research develops in a way that is both ethically robust and publicly supported.
Find out more about Health Innovation East and the Eastern England Secure Data Environment here.