100,000 Genomes Project: Gaynor's story

Gaynor Allen, aged 55 from Oxfordshire, is taking part in the 100,000 Genomes Project.

Here she explains how she got involved:

I have always been a keen sportswoman and lead a very healthy and active lifestyle; I run, cycle and swim many miles as well as playing badminton regularly. However, we can never predict what is around the corner and my world was blown apart when I was diagnosed with bowel cancer at the relatively young age of 54. Following surgery, I was offered genetic testing in Oxford and, subsequently, the opportunity to participate in the 100,000 Genomes Project.

I am no stranger to medical research having previously taken part in various studies linked to Type 1 Diabetes. I had read articles in the press about genetic medicine and, when offered the opportunity to take part in such a dynamic project, I jumped at the chance.

I decided to take part because I am eager to find explanations and answers to the question "why me?" I was also inspired by the possibility of identifying and applying 'tailor-made' treatments to my illness and medical condition.

I was given a lot of support by project staff before signing up and was not rushed or pressured in any way. Any concerns I had about the possibility of finding out things I (or my family) would rather not know were, and are, far outweighed by the potential benefits. The genetic tests which I had prior to joining the project gave my siblings access to medical investigation and preventative treatment and I know that any further findings as a result of my participation in the 100,000 Genomes Project could also benefit them and my wider family. Prevention is better than cure. 

There have been significant advances in medicine in my lifetime but there is still so much more to be discovered. Advances in technology have made the project possible and cost-effective, and I firmly believe this type of research to be both of the present and the future. Participation in the 100,000 Genomes Project, and in some of the other studies in which I have been involved, has given me a better understanding of my illness and condition; it has also given me hope.

I would, therefore, recommend getting involved in the 100,000 Genomes Project to others and would advise those wishing to find out more to act sooner rather than later as recruitment is due to end in 2018.

It is extremely exciting and a privilege to be part of such innovative research with huge potential benefits for present and future generations. Furthermore, I am so pleased to be able to 'give something back', via participation in this NHS driven project, to a National Health Service which has provided me with such excellent treatment. The NHS is not perfect but where would we be without it?

If you'd like to get involved in the 100,000 Genomes Project, like Gaynor, please speak to your consultant or email us:

oxford.GMC@nhs.net