Birgit

Birgit took part in the 100,000 Genomes Project when she started treatment for breast cancer. She was keen to be involved as she is all for research and hopes that this can help improve health outcomes.

Birgit was diagnosed with breast cancer in October 2016. She had always suspected she might get breast cancer, because both her maternal grandmother and great grandmother had breast cancer. She received some genetic counselling in the past; however she was never referred for further BRCA gene testing.

Once she was diagnosed, Birgit was very keen to begin her treatment as soon as possible. She pushed for a mastectomy which she had shortly after her diagnosis.

During her treatment, she was approached by the breast care nurse who asked her whether she wanted to be involved in the 100,000 Genomes Project. The nurse briefed her and gave her information leaflets which explained the details of the project. Birgit was eager to get involved, saying I’m all for research. She was ready to sign up as soon as she was approached, however the nurse urged her to go home and think about it properly. Birgit found the information provided was clear and she found it re-assuring to read that she could opt-out at any time. She feels that her information is in safe hands, and doesn’t mind if it is passed onto commercial companies.

Taking part in the project involved the donation of blood samples as well as tissue during her operation. The blood samples were supposed to be taken before her operation, however due to an error they had to be taken afterwards. This caused some discomfort as Birgit was just recovering from her surgery.

Birgit decided to take part in the project for the benefit of society. She hopes that the large amount of information gathered by the project can help researchers improve health outcomes, develop individually tailored treatments and improve disease prevention. While she doesn’t expect to hear any results, she thinks that it would be useful to know if any information emerged about potential genetic risks to her family.

Birgit wasn’t sure she would want to know about any secondary findings.

Age at interview 41

Gender Female

Age at diagnosis 41

Birgit’s breast cancer nurse forgot to refer her for the project and her blood sample was taken after her operation, which caused some stress.

Age at interview 41

Gender Female

Age at diagnosis 41

Birgit feels that guidance and support are needed when receiving any genetic results.

Age at interview 41

Gender Female

Age at diagnosis 41

Birgit was happy with the information given during the process and found the website helpful. She liked the fact it wasn’t too simple.

Age at interview 41

Gender Female

Age at diagnosis 41