As Genetic Alliance UK publish the report on their latest project, My Cancer, My DNA, Angela Wipperman comments on the major findings, and their implications for genomic research.

The first human genome took over a decade, and more than a billion dollars, to sequence. In the thirteen years since its completion, we have whole genome sequencing down to a thousand dollars and as fast as twenty six hours. This ability to sequence genomes faster and cheaper has allowed geneticists to study a range of conditions and cancers, and we could see genome sequencing become part of routine care, particularly in the field of cancer where ‘personalised medicine’ – matching a treatment to an individual based on their genetic makeup and likely response to certain drugs – is seen as a major source of potential.

While improving our understanding of the genetic basis of different cancers is vital to understanding how best to predict, diagnose, and treat the disease, just as important is the need to understand from patients how we deal with the ethical implications of this type of research and knowledge. Genetic Alliance UK is the umbrella charity representing people living with genetic conditions. With over 180 member organisations, we work to understand the needs of patients and improve the lives of people affected by genetic conditions by ensuring that high quality services and information are available to all who need them.

Through January and February 2016, Genetic Alliance UK ran a project, called My Cancer, My DNA, working with a group of cancer patients, and family/carers of cancer patients, to learn about their needs and expectations of genome sequencing in cancer care. We asked our participants to take some time to learn about genome sequencing and its current and potential applications in cancer via a series of online activities spread over six weeks. At the end of each activity, we asked them to answer some questions about how these ideas made them feel.Genetic Alliance UK My Cancer, My DNA

During the study we asked participants whether they would share their genomic data for research, what they would need if sequencing found that they had a gene mutation that increased their risk of cancer which could be passed onto their children, and what information they would want to know about their current and future health problems if they had their genome sequenced. Our participants shared some very thoughtful insights into these issues, and we were able to use their responses to write a detailed report on the patient view of genome sequencing in cancer care.

We found that almost all participants (92%) would share their genomic data for research. We also learned that most participants would want to find out about additional genetic conditions identified during genome sequencing, but worried about the difficulty of learning this information while already dealing with a life threatening condition.

These important findings have been used to develop nine recommendations for the NHS and research community to consider when integrating genome sequencing into cancer care. These recommendations included developing a streamlined pathway for all findings from genome sequencing to ensure patients see the right specialists at the right time, communicating clearly the limits of genome sequencing while it remains predominantly limited to research studies rather than clinical settings, encouraging research studies to utilize the willingness of patients through the NHS and links with patient groups and advocating the use of the dynamic consent model for research studies.

We launched the report, which you can read online, at an event at the Institute of Cancer Research. We discussed our findings with a panel of experts from the fields of medicine and research, and representatives from Cancer Research UK and Bloodwise.

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.

We were pleased to work with Cancer52, Bloodwise, Breast Cancer Now, and Cancer Research UK on this project.