Current projects
Understanding participation in genomics research
Understanding participation in genomics research

The 100,000 Genome Project was set up to collect and analyse genetic data from people with rare diseases or infections, and their families, as well as from people with common cancers. The aim is to collect 100,000 genomes. This 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, it is important to understand better:

  • why patients and health care staff agree to get involved in genomics research
  • people's experience of giving consent, taking part in the 100,000 Genomes Project and receiving information based on their genomic profile
  • 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.

We also need to understand why some people who are invited to take part refuse or drop out, since this may indicate the need to improve information provided and the consent process. Finally, we want to learn about the experiences of clinicians who invite people to join the study, since they are important for identifying potential participants and inviting them to take part.

The study is a collaboration between PIRU and the Oxford University Health Experiences Research Group and Health Experiences Institute in association with healthtalk.org.

PIRU is conducting a 24 month project. By August 2017, we had undertaken:

  • 25 interviews with 100,000 Genomes Project participants (including 11 rare disease participants and 14 cancer participants)
  • 26 interviews with health professionals involved in recruiting to the 100,000 Genomes Project
  • 7 focus groups with members of the public about genome sequencing and health data sharing in general
  • 1 focus group with non-specialist NHS professionals.

The remaining fieldwork comprises two focus groups with black and ethnic minority members of the public and three with non-specialist NHS staff.

The findings will inform the development of the 100,000 Genomes Project. The research will generate a module of patient and staff experiences for the Healthtalk.org website. This willl be useful for training staff and explaining the 100,000 Genomes Project to future participants. The findings will also inform future gene banking and data sharing initiatives. A final report should be available in spring 2018.