Last year Genomics England commissioned Genetic Alliance UK to seek the views of patients and families on some of the issues raised by the 100,000 Genomes Project including:
What findings should be fed back to participants of the 100,000 Genomes Project?
How should personal information about participants of the 100,000 Genomes Project be shared with others?
How should participants of the 100,000 Genomes Project be contacted about their involvement in future research studies?
An online survey and follow-up telephone interviews captured the views of over 230 patients and family members. The findings were used to help guide the 100,000 Genomes Project and the development of information for those that will take part.
The 100,000 Genomes Project now has ethical approval from the Health Research Authority Ethics Committee to offer patients in the NHS further information about their genomic results. The final project protocol and participant information can be accessed via the Genomics England website.