100 000 Genomes Project Participant Stories - Libby's story
A mother whose daughter died from cancer after treatment at the Royal United Hospital (RUH) in Bath has spoken about the value of joining the 100,000 Genomes Project for research and for helping her to come to terms with her grief.
Diane Woodland’s daughter Libby volunteered for the project after she was admitted to the RUH and diagnosed with a rare cancer. She died aged 25 in August 2018.
Diane said: “The doctors told us they’d never seen a cancer before like the one Libby had and they didn’t know what treatment to give her. “My deepest fear was that, having produced Libby and her brother George, it was something my husband and I had passed on to her.”
Tracie Miles, RUH gynaecology clinical nurse specialist for gynaecology cancer and legacy genomics practitioner, recruited Libby to the 100,000 Genomes Project through the West of England Genomic Medicine Centre (WEGMC) while she was being treated at the hospital. The national project was a major NHS initiative to sequence 100,000 genomes from patients with rare inherited diseases or with cancer and to transform NHS services to include genome sequencing as standard care for future patients. The ambitious aim to sequence 100,000 genomes (DNA sequences) from NHS patients was reached in December 2018.
Tracie said: “Libby wanted to know about her cancer. Her biggest fears were for her family and their future – she wanted more information for herself and for them. In addition she wanted to help patients in the future with information from her stored genomic data. The results that came back showed there was no inherited reason for her succumbing to this cancer. This was a real relief for her mum and her dad.”
Diane said: “It was just amazing to find out that George is very unlikely to have it, I can’t express how much that means.“Signing up for the trial means that, hopefully, things will be discovered that go on to help other people, which is what Libby so wanted to do from such an early age. It might take five or 15 years but I just hope that the information that’s needed is supplied – and I’m so proud and lucky that my daughter has been able to take part in this research.”
Tracie added said: “Genomics has the ability to influence the care we give today. For example a woman newly diagnosed with ovarian cancer will have her tumour tested to see if she carries an alteration of her BRCA 1 or 2 gene. If that’s the case it may mean that her oncologist, the doctor who prescribes her chemotherapy, could have other therapeutic choices for her, and it may increase her survival advantage. It will also give important health information for her family, who may choose to be tested to see if they carry the altered gene, enabling them to access relevant screening and other cancer risk reducing strategies. So, the learning is already making a difference now for patients, not just in the future.”
The current focus for the local WEGMC teams is on returning results to patients and their families, where appropriate, and also sharing the important impact that this project, and genomic medicine in general, will have on future patients locally, nationally and potentially across the world.
Diane kindly agreed to share her story and that of her daughter Libby through a video which can be viewed here.
The WE GMC team wanted to express our upmost thanks to Diane for taking the time and the courage to share this extremely personal experience and sharing her view of the importance of being involved in projects such as the 100,000 Genomes Project.