In 2016 we worked with Genomics England, an offshoot of the Department of Health, to create a national conversation around data privacy issues in genetic medicine. Genomics England are running the 100,000 Genomes Project to collect the entire DNA (or genome) of a large group of volunteers, to help diagnose illnesses. The technology has huge potential for the future of medicine and Genomics England wanted to find out the main concerns and hopes around the technology, in preparation for embedding genomic medicine in the NHS. Our work comprised of: 

  • Public Attitudes Report to bring together all research into what people think about the issues and draw out themes and gaps for further research. We checked and verified this report with a range of experts in the medical and public engagement fields. 
  • A 3-month programme of Future Debates, our flagship public policy event format. We held 23 events across the UK, featuring local experts and recording the main discussion themes. We also created an engaging animation to explain some of the issues. 
  • Deliberative Dialogue Event with a representative group of 25 members of the public, allowing us to delve deeper into the hopes and concerns of participants and, crucially, to understand why they felt the way they did about genetic medicine. 

Findings – Through this work we discovered that views on the future of genetic medicine are complex, with many feeling a strong sense of trust in the NHS and an aversion to private companies handling genetic data. Many participants desired safeguards and clear explanation of the use of their data. Genomics England is now taking this information into account in the advice they provide to Government. 

Feedback “The British Science Association’s work provided a unique and valuable insight into public views on our policy priorities. We felt the events were run thoughtfully and effectively, and the subsequent analysis was insightful and robust. Given both the sensitivity and complexity of the topic, it was very beneficial to be able to work with an independent body with expertise in both science and public engagement.” Katrina Nevin-Ridley, Director of Communications, Genomics England

To find out more about our public attitude research tools, click here.