The project, 'My Cancer, My DNA’, aims to gather the thoughts and opinions of those affected by cancer on the practical, societal, and ethical implications of the use of whole genome sequencing in cancer prediction, diagnosis, and treatment. We are currently recruiting cancer patients, and families of patients, to complete a series of online activities that will ask for their opinions on different ethical aspects of whole genome sequencing, including finding out about incidental findings and data privacy. The sessions will take around a half hour a week over six weeks, and can be completed at home at any time convenient to the participant. We wondered if you would be able to help spread the word about the project, and share our recruitment flyer with the patients and families you represent and work with.
At the end of the project, in March 2016, we will be producing a patient and family charter, to be presented to policy makers, clinicians, researchers, patients and the general public, that will set out recommendations for integrating whole genome sequencing into NHS cancer care in a way that fully considers the needs and concerns of patients. We will also be running a week of events to launch the charter, and to disseminate our findings as widely as possible. We ran a similar project last year, which focused on whole genome sequencing in undiagnosed conditions. You can read about it here.
We think this is an important piece of work, that addresses a challenging issue. We want to represent a broad spectrum of patients, in terms of stage of diagnosis and treatment, ethnicity, and socio-economic background, to ensure that a genuine patient voice is heard by those in the position to make decisions about genetic services in the NHS.