The 100,000 Genomes Project was set up to collect and analyse genetic data from individuals and families with rare diseases, as well as from people with common cancers.The Project achieved its goal of sequencing 100,000 genomes in December 2018. The genetic information will be stored and used for future research, helping us learn more about the causes of different diseases and develop new, more targeted treatments.
To improve the Project, as it was being implemented and for future similar exercises, it was important to understand better:
- why people agree to take part in genomics research
- people's experience of giving consent and taking part in the 100,000 Genomes Project
- their attitudes to data sharing, governance and confidentiality (including their level of trust in the 100,000 Genome Project and similar initiatives)
- their views about feedback and use of their data for research and clinical care
- the views of the general public on genomics and the collection of genomic data
- the views and experiences of specialist and non-specialist NHS staff related to the Project and the future application of genomics to clinical care.
PIRU undertook this study between 2015 and 2018 in collaboration with the Oxford University Health Experiences Research Group and healthtalk.org which systematically collects videos of thousands of people who are willing to share their experiences of what it is like to have a particular health condition or to take part in medical research.