The My Cancer, My DNA project captured the perspectives of cancer patients and their families on the implementation and use of genome sequencing in healthcare. The project is now complete.
Genome sequencing is a technology that offers great utility and has a wide range of possible uses, including the diagnosis and development of future treatment for many conditions. This, coupled with the fact that the speed and cost of sequencing have dropped dramatically, means that for the first time, large-scale, routine genomic medicine could become a reality for NHS healthcare.
Our Patient Charter makes nine recommendations for consideration before genome sequencing becomes widely incorporated into NHS services as part of clinical cancer care. Recommendations are grouped under three broad themes based on what is important to patients, as told to us by our project participants.
Over six weeks in January and February 2016, we ran a project called My Cancer, My DNA. We worked with over 80 cancer patients, family members of cancer patients, and those living with an increased risk of developing cancer to build a picture of patient views of genome sequencing, and the practical, ethical, and societal challenges the technology raises.
During the project, we ran a series of online activities, including quizzes, podcasts, and online chats. We have made the resources from the activities available online. You can take a look, here. Participants were asked to give around a half hour a week of their time, for five weeks, to work through the information online, and then give their view through questionnaires and comment boxes. At the end of the project, we gathered the information together to develop a Patient Charter, outlining nine recommendations for health professionals and key decision makers to consider before genome sequencing becomes widely incorporated into NHS services as part of clinical cancer care.
Throughout the project, we consulted regularly with our working group of cancer charities: Cancer52, Bloodwise, Breast Cancer Now, and Cancer Research UK. In this way, we ensured we were working not only with patients, but also with those experienced in the cancer policy landscape.
The final report was launched on 8 March 2016, by George Freeman MP, at the Institute of Cancer Research. A panel of seven experts drawn from clinicians, researchers, and patient groups discussed the recommendations. From 7th March to 11th March, we held a week of awareness raising events called Genome Seq Week. This included a trip to the Wellcome Trust Sanger Institute with patient participants from our project, collaboration with the Wellcome Collection on their Packed Lunch series, and an evening science cafe in London. You can read more about the week here, and find all of our tweets using #GenSeqWk.
My Cancer, My DNA was funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at The Royal Marsden NHS Foundation Trust and The Institute of Cancer Research.
If you want more information about the My Cancer, My DNA project please contact Mariana Campos.