Delivering 100,000 Genomes Project results

All those who participate in the 100,000 Genomes Project will receive feedback on their ‘main findings’. A main finding is one which is relevant to the condition which led someone to take part in the project and will be changes or variants in a person’s genomic sequence. The changes could be relevant to the explanation, diagnosis or treatment of a participant’s rare disease or cancer.

Findings will be fed back to the NHS to confirm the results and then the clinician will give the findings to the participant and discuss what they mean. Participants may also receive information on additional finding if they chose to, however they can opt out of any additional findings at any time.

The first participant results from the 100,000 Genomes Project are expected in late 2016, from there on results are expected 6/12 months following consent.

We are in the process of designing training for staff who will be communicating results to patients. If you feel training would be useful, if you’ve experienced issues around results or have concerns around how to deliver results, please complete the ‘100,000 genomes delivering results training survey’. We are keen to hear how we may be able to help you with this process so we can shape the training programme accordingly.