Dr Sophia Skyers Director, CIBS IQ Research
CIBS IQ Research Inclusion by Dialogue and Design 100,000 Genomes Project Black African and Black Caribbean Communities A Qualitative Exploration of Views on Participation Report Author: Dr Sophia Skyers Director, CIBS IQ Research June 2018 Acknowledgements Dr Sophia Skyers, the author, would like to thank all of the focus group participants, event attendees and radio panel members for the invaluable contribution that they have made to informing this report and to shaping its recommendations. The participation of the community and the critical exchange of views is vitally important, and projects such as these cannot be undertaken without that active engagement. The author would also like to thank Can-Survive UK, BME Cancer Communities, Genomics England, and all of the healthcare professionals, geneticists, genetics researchers, and stakeholders from a range of organisations for sharing their knowledge, experience and insights so openly, and to Dr Rohan Morris for sharing his experience on ethnicity and access in relation to clinical research. 2 Table of Contents Executive Summary 4 100,000 Genomes Project 4 1. Introduction and background 9 2. About the 100,000 Genomes Project 9 3. Purpose and approach to conducting the study 13 4. Discussion oF Findings 15 a) Interviews with stakeholders 15 b) Focus groups, awareness-raising events and media campaigns 24 5. Conclusion, synthesis and recommendations 38 Appendix A – Focus Groups 41 Appendix B – Awareness Raising Events and Radio Campaigns 42 Appendix B – Stakeholder Interviews 43 Appendix B – ReFerences 44 3 Executive Summary 100,000 Genomes Project The 100,000 Genomes Project is aiming to sequence 100,000 whole genomes from approximately 70,000 consented NHS patients in the UK with all types of cancer, and rare diseases, as well as patients’ family members, as these diseases are strongly linked to changes in the genome.
[Show full text]