The 100k 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. Recruitment is planned until the end of 2017, with the aim of covering 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, we wish to understand why patients and health care staff agree to get involved in genomics research; people's experience of receiving information, giving consent and taking part; their attitudes to data sharing, governance and confidentiality (including their level of trust in the 100k Genome Project and similar initiatives); and 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.
Our study is a collaboration between PIRU and the Oxford University Health Experiences Research Group and Health Experiences Institute in association with healthtalk.org.
PIRU will conduct an 18 month study involving in-depth interviews with: around 40 people who have been invited to take part in the 100k Genome Project, including some who decline or withdraw, and around 40 interviews with health professionals with different levels of experience in recruiting to the Project, including those with expertise in rare diseases and genetics, and others who do not have this background. We will also seek the views of a wider group of patients and members of the public about genome sequencing and health data sharing in general, since there are other similar ventures to the 100k Genome Project underway or being planned. There will also be eight group discussions: two with patients with cancers and other conditions; two with general members of the public; and four with 'seldom heard' groups of people who are less likely to volunteer to take part in research.
The findings will inform the development of the Project and provide resources (including a series of short films) for training staff and explaining the Project to future participants. They will also inform future gene banking and data sharing initiatives. A final report should be available at the end of 2016 or early 2017. Healthtalk.org will also be used to make resources from the study publicly available.