The All-Party Parliamentary Group on Personalised Medicine welcomed more than fifty parliamentarians and stakeholders to an exclusive breakfast meeting in the House of Lords on Wednesday 6 July. Held in collaboration with Genomics England, the meeting focused on assessing the progress of the 100,000 Genomes Project and the implications for patients and the NHS.
Attendees were welcomed by APPG Chair Jo Churchill MP and Co-chair Lord Warner before hearing from three prominent speakers. As Chief Scientist at Genomics England, Professor Mark Caulfield gave an introduction to the 100,000 Genomes Project. A clinical perspective on the project was given by Professor Maria Bitner-Glindzicz, while Edward Sherley-Price, chair of the 100,000 Genomes Project participant panel, offered the patient perspective.
The meeting concluded with an in-depth Q&A where attendees posed questions on topics ranging from accessibility and data security to clinical evaluation strategies and the level of understanding of the 100,000 Genomes Project among healthcare professionals.
Minutes from the meeting are available here.
A storify of the event is available here.
Quotes from the day
“Understanding how a person's genome determines their response to a drug will help us with the knowledge in developing new diagnostic tests, it will give greater understanding to parents who carry inherited conditions and allow us to test more effectively...It is already important for the detection and control of hospital infections...and antibiotic resistance"
Jo Churchill MP
Chair, APPG on Personalised Medicine
Speaking about his daughter's diagnosis through the 100,000 Genomes Project: "The key thing it gave us was...hope. Hope that future medicines could potentially be available through continual testing. Hope that future developments in genetic testing may again help Alysia or people like Alysia. And hope that awareness of genetic conditions generally and across society, [will help us] to understand and support people like Alysia or those at risk of being socially excluded.”
Chair, 100.000 Genomes Project Particpant Panel
“We've completed sequencing the genomes of 3000 bacteria that cause tuberculosis...If we can understand the genetic make-up of bacteria, it could be possible that you and I will be able to design and benefit from the next generation of new, antimicrobial medicines.”
Prof Mark Caulfield
Chief Scientist, Genomics England
"For each patient...Genomics England are asking us to take up to 5 tubes of blood and each one then has multiple replicas. So imagine the workload for our NHS laboratories. Hundreds of thousands of extra samples, so this is really a logistical challenge on top of the clinical laboratory medicine that we do daily."
Prof Maria Bitner-Glindzicz
Clinical and Molecular Geneticist, UCL Institute of Child Health and Great Ormond Street Hospital NHS Trust