Biobanking

Claire - Interview 06

Female
Age at interview: 52

Brief outline: Claire was invited to take part in the UK Biobank, and was happy to take part. She is very interested in supporting medical research.

Background: Claire works as an NHS manager in a big acute trust. She is single. Ethnic background/nationality' White British.

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Claire received a letter inviting her to take part in the UK Biobank, 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.

 
Claire works as an NHS manager in a big acute trust and she is a very keen supporter of medical research. She was interested to take part, and felt it was almost a privilege to be asked, so she quickly said yes. She booked an appointment on a Saturday morning, and put a cake in the oven before leaving the house, expecting it would be a short visit. It was only when she got there that she realised the information sheet said she might need to be there for up to two hours. At the time, she had not felt she needed to read the information in great detail, because she trusted completely that it was a good project to take part in. It might have helped to have a short summary on page one to draw her attention to the length of the appointment – but then again, that might have put some people off, which she feels would be a shame. The consent process on the day was very thorough anyway, and it was clear throughout that you could opt out of certain questions or tests if you wanted to.
 
As it turned out she was only there for about an hour and a half, so she got home before the cake burned. Claire enjoyed doing most of the tests, a bit like doing a quiz. Some of the lifestyle questions were quite personal, but she took the view that it was important to be completely honest if the research was to be accurate, and was confident anyway that it was all anonymous. The only thing she found more difficult was having to give a urine sample into a tiny pot. She was not able to do one test involving her eyes because she had recently had laser eye surgery. Having a print-out at the end was useful, although she remembers being slightly affronted at being told that her weight was rather too high.
 
She has told lots of friends and colleagues about the study, and would encourage anyone to go along. The hospital where Claire works is experimenting with an ‘assent’ form, where they will ask all patients who come through the hospital if they would be happy to be approached about specific research projects in future. She feels this would be a great way to increase the pool of people available to support medical research and help others in future.
 

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