Will gene therapy ever happen? What young people with cystic fibrosis really think

A brand new set of online resources - developed by teenagers for teenagers - exploring cystic fibrosis (CF) and gene therapy is launched today (15 March).

Natasha working on the Changing Futures projectThe Changing Futures project, led by Manchester-based Nowgen (a centre for excellence in public engagement, education and training in biomedicine), worked with young people with CF, artists, clinicians, educators and scientists, to create new and interactive ways of understanding and investigating CF and gene therapy. 

Cystic Fibrosis is one of the most common genetic conditions in the UK, with over 9,000 people affected by the condition. People with CF are advised not to meet each other due to the risk of cross-infection, meaning opportunities to discuss their experience and their views of research and treatments for CF are very limited.

Supported by a People Award from the Wellcome Trust, the Changing Futures project held a series of creative workshops to enable young people living with CF to share their experiences of the disease and their expectations and opinions on gene therapy. From these, and with the help of the project team, they conducted interviews with scientists, and produced video diaries, animations, fashion and art, a music mash up video, and classroom resources for teachers to help others better understand cystic fibrosis.

17-year-old Natasha, a young person with CF who was part of the project group, said “I got involved in the project because there was no resource on the internet, or otherwise, that addressed the concerns teenagers have about gene therapy, there was nowhere that broke it down so it was easy to understand for people my age.

In doing the project I learnt so much myself about gene therapy and also had the opportunity to interview scientists about it. I hope the project informs people my age about what gene therapy is, without being too complicated, or patronising, as I think it’s important that teenagers with cystic fibrosis know more about it, as we hope it will profoundly affect our lives.”

Lynsey Morton, a Clinical Care Patient Advisor with the Cystic Fibrosis Trust said of the project; “The website is great because it is so creative and interactive. The involvement of young people with CF has really helped to make learning about CF and gene therapy both appealing and fun.

“Overall I do think that the website will be a valuable resource, not just for young people, but also for the CF community and the wider general public to help increase awareness and understanding of both CF and gene therapy in a way that is interesting and accessible.”

Laura Winters, the Changing Futures Project Manager at Nowgen said “Gene therapy is a really exciting area of science, and one that is developing rapidly. We felt it was important that young people have the opportunity to explore this topic and share their opinions. To work with such a diverse team on this project was a real privilege, and we hope that the final website will appeal to a wide range of audiences.”

The Changing Futures project comprises three zones: The CF Zone, The Gene Therapy Zone and The Teacher Zone. The first two zones explore how CF is inherited and the effect it has on people’s lives, as well as the history of gene therapy and the latest developments. The third zone is specifically for teachers, it includes activities and experiments, interviews with a range of experts and links to further information, to complement elements of the National Curriculum and A-Level Biology.



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