Gill - Interview 01

Age at interview: 55

Brief outline: When Gill had breast cancer, she gave consent for a tumour sample to be kept for research, and gave an extra blood sample for blood marker assays. She has also taken part in the UK Biobank study.

Background: Gill is a Primary Care Organisations Coordinator and is married with two grown-up children. Ethnic background' White British.

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When Gill was diagnosed with breast cancer in 2007, she was invited to take part in two studies involving tissue or blood samples. In the first, she was asked for consent for a piece of the tumour to be kept for future research. She was happy to give permission. There was nothing extra involved for her as the tumour was being removed anyway, and she was pleased if something good could come of it for future generations. It was explained to her that the tumour sample could be used in studies run by commercial companies, but she was not worried by this. 

She was also asked for an extra blood sample for a study involving blood marker assays, at a time when she was having blood taken anyway. Tumor markers are substances produced by tumour cells or other cells of the body in response to cancer. They can be found in the blood, in the urine, in the tumor tissue, or in other tissues. Understanding more about these markers may help doctors detect cancer earlier in future, which is why researchers are interested in them. Again, Gill was happy to take part, and it involved very little extra on her part. However, she did feel the nurse taking the sample did not know enough about the purpose of the study to explain it properly. If it had been a more invasive test, she might have asked to talk to someone else to find out more before agreeing, but as it was it did not really matter to her.
Finally Gill was invited to join the UK Biobank study, a study which aims to collect samples of blood and urine, measurements such as height, weight and blood pressure, and lifestyle details such as exercise, diet, smoking and alcohol from half a million people nationally. By linking this information with future health records scientists hope to make progress in understanding causes and risk factors for many types of disease. Gill feels this is a really worthwhile project to take part in – for her it seems like a community duty to help with medical research if you can. She had a 90-minute appointment at a local centre where she did a computer survey and had various measurements taken, as well as giving blood and urine samples. The only thing she was concerned about was the lack of privacy during the computer survey, but otherwise it was an interesting experience. She was pleased to get a print-out of some of her personal results, which showed she had high blood pressure. She went to see her GP, who is now monitoring it. 
Gill feels there is good regulation of tissue banking and that she can trust her samples will be securely and respectfully looked after. She knows some people are worried about what they see as too much government surveillance and the risk that somehow their data may be misused, but she feels confident it will be used appropriately. She might consider leaving her brain for future scientific research, but would probably not be willing to leave her body for medical students to learn anatomy, mainly because she would be unsure about how respectfully it would be treated.


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