This is a qualitative study in collaboration with the University of Oxford and the London School of Hygiene and Tropical Medicine.

The aims are to:

  • understand the motivation of people who agree to take part in genomics research; their experience of receiving information, giving consent and taking part; their attitudes to data sharing, governance and confidentiality and their views about feedback and use of their data for research and clinical care;
  • understand why some people who are invited to take part in the 100,000 Genomes Project refuse to do so or withdraw; 
  • learn about the experiences of clinicians who ask people to take part in the Project.


Louise Locock (co-investigator):


Report submitted