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. Its purpose was to gauge from patients themselves how they feel about genome sequencing and its use in clinical settings; their hopes, concerns, how it will affect them and what they can contribute to knowledge and research. It had a broad remit.
To understand the expectations and needs, directly from the patient about the impact genome sequencing could have on their clinical care and in the future treatments of cancer.
Problems addressed by Initiative
This is an early research study to gather data to identify where cancer treatments could be developed at an early stage, utilising patients willing to donate their genetic data. It is also about expectation management - communicating to patients whether a future treatment is likely to impact them. Some treatments will only impact on particular gene mutations; communicating why some people might not receive or be suitable for that treatment. This is future looking - to techniques that will be used increasingly in cancer care. Understanding whether we are doing enough within that pathway to ensure patients are managed in a way that suits their needs. Are we delivering cancer treatment and care in a way that considers the patient?