Cancer patients’ views on genome sequencing

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. 

What we found:

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. 

It is important that patients understand the genetic nature of cancer and the relationship between cancer and genomics.

  • The power and limitations of whole genome sequencing should be clearly communicated to patients. The difference in findings about genomic changes present only in cancer cells (somatic mutations) and those present in all of a patient’s cells (inherited mutations), and how these findings might be used by doctors, should also be clearly communicated.
  • Researchers should be careful to manage patient expectations when recruiting patients to genomic studies. Researchers should consider patient expectations when they communicate with patients about how such studies could impact on patients, their families, and/or future cancer patients.
  • Cancer charities and patient networks should be engaged to help increase knowledge of genomic sequencing and to ensure patients understand the scope of genetic studies.

A clear and efficient route map should be established to ensure genomic sequencing results are translated into appropriate and timely clinical care decisions for individual patients.

  • A streamlined patient route map should be developed to support healthcare professionals who are responsible for making treatment decisions based on genetic tests and dealing with ‘additional findings’ through genome sequencing.
  • Further work and research is necessary to better understand the appropriate timing for sharing information with patients and their families about additional findings from genome sequencing.
  • Patients’ views on what additional findings they want to know about can change over time, and this should be respected. ‘Dynamic consent’ is an approach to dealing with this situation that should become standard in clinical cancer care.

Research can benefit from the willingness of patients to share their genetic data.

  • Patients are in the main supportive of research, and welcome opportunities for their genetic data to be used in genetic and genomic studies in relation to their treatment.
  • Good communication about the aims of research and how results will be used could lead to greater involvement of patients in research using genetic data, with greater confidence from patients in the work being undertaken.
  • Genomics research studies should take better advantage of the NHS, medical research charities, and patient groups as a source of recruitment.

How we worked:

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.