Genome editing has an amazing amount of potential to help us understand and potentially cure or treat genetic conditions. It is crucial that when genome editing is talked about, the messages are clear: Is this cure available now or are we still in the research phase? How long will it take for a headline grabbing bit of progress to benefit patients?
We have now launched our report on this work.
We worked with Progress Educational Trust on a project funded by Wellcome to explain genome editing to patients, parents and carers affected by genetic conditions. We wanted to enable them to discuss genome editing and participate in future discussions about this important technology. While we did that, the project team worked to identify the most appropriate way to describe genome editing to simply get the most important issues across. Our full report, and more detail about the work, is here.
We gathered a group of 18 people affected by genetic conditions, including: inherited breast cancer risk, cystic fibrosis, Ehlers-Danlos syndrome, epidermolysis bullosa, leukaemia, muscular dystrophy, Niemann-Pick disease, Noonan syndrome, primary ciliary dyskinesia, sickle cell disease and thalassaemia. There were lots of applications to be part of this project, many more than we could accommodate, so we added an online engagement element to the work too. The engagement and contribution from the participants was amazing; we are tremendously grateful to all who took part.
We want to keep up the momentum on this project, with a specific focus on our patients', carers', and family members' views on some of the ethical issues around genome editing, so please stay tuned for the next step. If you have any questions about this work, please get in touch with our Membership and Public Engagement Manager, Mariana Campos.