This report summarises the views of people across the East of England on the use of genomic data for health research.
Genomic Medicine is the study of how the information contained within a person’s DNA influences their health. This information can help identify if someone is at risk of certain diseases and how they might respond to treatment.
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. Currently, genomic data used in research relies on opt-in consent. We assessed attitudes towards using the existing NHS opt‑out model, already in place for other health data research.
Find out more about Health Innovation East and the Eastern England Secure Data Environment.
We found that public support for using genomic data in research is strong, so long as safeguards, transparency and choice are in place. Respondents told us they see genomic data as being particularly sensitive, because of its unique connection to each individual. As a result many would want to see robust data protection in place and clear information about consent and how the data is used. Public awareness of genomic research and SDEs is low, yet participants consistently highlighted the significant benefits, particularly in improving outcomes for cancer and rare diseases and advancing medical breakthroughs.
Based on our findings we have made a series of recommendations, including:
- Increase public awareness of genomic data use
- Strengthen transparency and accountability
- Make opt-out options clearer and easier to access
- Demonstrate robust data security and governance
- Use trusted NHS communication channels
- Continue ongoing public engagement around the subject of genomics research and SDEs
