Lucy Z
Lucy Z took part in the 100,000 Genomes Project when she was diagnosed with endometrial cancer in January 2013. She thinks the project is an ambitious one which may be quite influential.
Lucy Z was diagnosed with endometrial cancer in January 2013. She was invited to take part in the 100,000 Genomes project while she was in the waiting room for her pre-operative assessment.
A nurse approached her and her partner and left them with information leaflets. The nurse was very polite and Lucy Z didn’t feel under any pressure to sign up. Lucy Z felt that it was difficult to read the leaflets and take in the information at the time because she was nervous about her appointment. Her partner went through the information leaflets with her and encouraged her to take part.
After discussing it with her partner, Lucy Z agreed to take part. She felt that taking part was worthwhile for a number of reasons. Firstly, the 100,000 Genomes Project sounded like an ambitious project that could be influential. Secondly, there was the possibility of extra screenings that she may not receive through the normal treatment process. And thirdly, the results from the research could help others as well as herself. She also felt that participating in the project would be giving something back to the NHS.
Lucy Z had a couple of concerns about confidentiality and the commercial use of her samples. She worried that commercial companies may be able to identify her through her sample and target her with advertisements and products. However, after reading the information leaflets further and receiving assurance from her partner, she felt this was unlikely.
Overall, Lucy Z thinks that the project was easy to take part in as it involved minimal involvement on her part. She donated extra blood samples at the same time as samples were taken for her pre-op, and tissue samples were taken during her operation.
Lucy Z hasn’t thought much about getting results and wouldn’t be bothered if she heard nothing further from Genomics England. She wouldn’t want to be given any information that could be frightening or scary. She is keen for life to return back to the way it was before her diagnosis, as far as is possible.