As genome sequencing becomes a more common technique within the NHS, questions about the best way to regulate access to genomic data and how it is used, and how these processes are best communicated to patients and study participants become ever more important. The answers to these questions will help inform the way the health service should handle genomic information about its patients.
If you are over 18, and are a patient, or a relative or carer of a patient, with a diagnosed or suspected rare genetic condition or cancer, we want to hear from you. We are looking to learn from patients how they feel about the use and regulation of genomic data.
The 100,000 Genomes Project is sequencing 100,000 human genomes, including the genomes of certain cancers, with the aim of helping the NHS become one of the first health systems in the world to use whole genome information in mainstream clinical practice. It also allows approved researchers worldwide to access the information from the sequenced genomes to generate more knowledge to help patients, but the project raises some difficult questions:
What personal and genomic information should be made available to medical researchers?
What should happen when patients withdraw or can’t give their consent to be in the project?
What consequences should there be for misuse of genomic data gathered during the project?
We have developed two 20 minute surveys, the first of which is now online. The survey results will help inform the way the 100,000 Genomes Project collects and shares the data it generates. More information on how we will use the responses can be seen on the first page of the survey.
If you have any questions before taking part, or during the survey, you can contact our Public Engagement and Project Manager, Mariana, or call our office on +44 (0)20 7704 3141.