The second annual Genome Seq Week took place on the week beginning Monday 7 March 2016. The theme of the week was genome sequencing in cancer, and saw the launch of our new Patient Charter, titled Genome Sequencing: what do cancer patients think?, and also provided an opportunity to meet with a range of groups with an interest in genomics research.
Engaging with patients
On Monday 7 March, we travelled to the Wellcome Trust Sanger Institute, in Hinxton, with eighteen of our participants from the My Cancer, My DNA project, to hear about the work of the Institute’s cancer researchers. We were treated to a talk from Dr Serena Nik-Zainal, whose work focuses on inherited cancers, and a lunch with the rest of Serena’s team. The day ended with a tour of the campus, including the sequencing room where tens of thousands of genomes will be sequenced as part of the 100,000 Genomes Project.
We also found time on Monday to hold a Twitter chat all about cancer genomics and what it means for patients, with clinical geneticist Dr Shane McKee, Bloodwise’s Head of Research, Matt Kaiser, and BRCA Umbrella founder, Caroline Presho. Over an hour, we covered topics including what sequencing involves for the patient, and where current research is looking the most promising for clinical applications.
The Patient Charter
The Charter, which makes 9 recommendations for consideration before genome sequencing becomes widely incorporated into NHS services as part of clinical cancer care, was developed through a series of online activities completed by over eighty people with experience of cancer as a patient, or as a family member of a patient. Through January and February, we asked participants to share their experiences of, and views on, some of the practical, ethical, and societal impacts of genome sequencing. We were helped by our working group of cancer charities: Cancer Research UK, Bloodwise, Cancer52 and Breast Cancer Now. The resulting Charter highlights the common themes drawn from our findings.
We found that 92% of our participants would share their health and genetic data for research, but would require reassurance of reliable data safeguarding and clear outlines of research aims before doing so. We also found that most cancer patients would want to know about additional findings found during genome sequencing as part of cancer care, and we recommend more work be undertaken to establish how best to deliver such findings, and when would be the best time to inform patients of findings that could cause worry and distress to those already undergoing treatment for a life threatening disease.
Our Charter also highlights the importance of developing a streamlined pathway for cancer patients who have had other genetic conditions identified, to ensure appropriate care is provided in a timely and priority driven manner, by health professionals who are expert in their field.
We launched the Charter on Tuesday 8th March at the Institute of Cancer Research. George Freeman MP introduced the Charter, before our panel of experts discussed the findings and recommendations. Our panel included:
Prof. Nazneen Rahman, Head of the Division of Genetics and Epidemiology at the ICR and Head of the Cancer Genetics Clinical Unit at the Royal Marsden NHS Foundation Trust
Mil Vukovic Smart, Policy & Public Affairs Manager at Bloodwise
Vivienne Parry OBE, Head of Engagement at Genomics England
John Solly, Cancer52 board member and director of the Myrovlytis Trust
Zoe Molyneux, Senior Policy Adviser at Cancer Research UK
Dr. Lisa Walker, Clinical Genetics Consultant and Cancer Lead at Oxford University Hospital
The launch was well attended, and questions from the floor ensured a lively discussion.
Engaging with the public
Wednesday saw us head to the Wellcome Collection on Euston Road. We collaborated with the Wellcome Collection on their March Packed Lunch. The Packed Lunch events are held at the Collection once a month, and provide the visiting public with the chance to hear, for free, from a local researcher. We were pleased to support Dr Charlotte Pawlyn, an Institute of Cancer Research scientist whose team is looking for mutations in myeloma patients that could be targets for treatments. Charlotte spoke for half an hour about her work, before the audience were invited to ask their own questions. The event was recorded, and will be available as a podcast soon.
To draw the week to a close, we hosted a science café in Shoreditch on Thursday 10 March. With free entry to the general public, this was a chance to raise awareness about cancer genomics research to a wide audience, and to also hear from the public what they think about genome sequencing in cancer.
We invited Dr Katie Snape, lead consultant in cancer genetics at St George’s University Hospital, and Dr Clare Turnbull, cancer program lead on the 100,000 Genomes Project, to speak with our audience. Katie spoke about the changes in DNA that can give rise to different cancers, and how she is using this knowledge in the clinic. Clare took over to talk through some of the research in which she has been involved, and to tell us all about the 100,000 Genomes Project. The interval was a chance for some audience participation. Attendees were invited to take some time to think about some of the questions raised in our Charter, displayed as posters around the venue, and to note down and share their idea on a post-it note stuck to our posters. The audience got stuck in, and shared some interesting and varied views. A vibrant Q & A brought the night, and Genome SeqWeek, to a close for 2016.
To see all of our Tweets from our events during Genome SeqWeek, you can search #GenSeqWk on Twitter.
If you would like to find out more about the Charter, or the My Cancer, My DNA project, you can email Angela.