Biobanking

Chris - Interview 07

Female
Age at interview: 57

Brief outline: Chris has been a healthy volunteer in several biobanking studies over a number of years. She started with the UK Biobank, but has since become a regular healthy participant in diabetes research. She likes to feel she is helping others.

Background: Chris is a finance office manager. She is divorced and has no children. Ethnic background/nationality' White English.

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Chris was invited to take part in 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. She was pleased to take part, as she likes to do things which she feels may be of help to others in future. She has donated blood for many years.

 
Later, she was invited to take part in another study which needed healthy volunteers to help understand diabetes and develop treatments. She has since been invited back several times by the same research group, and has always agreed to take part. In the most recent study, she got to see pictures of her heart beating taken in a scanner, which she found fascinating. Several of the studies have involved giving blood samples, and she has also had various biopsies, usually from her stomach area. These can be a bit uncomfortable and normally leave a bruise, and on one occasion it was quite painful. The only time she had real problems was when one study involved her drinking ‘heavy water’ before a scan, and it made her feel very dizzy and sick. She would probably not be willing to take part as a healthy volunteer in drug trials, though she might do if she was ill.
 
However, Chris feels it is always her choice and she can say no whenever she wants. The staff have always shown great concern for her, kept her well informed, and made sure she knows she can stop if she wants to at any point. She knows it is difficult for researchers to find enough healthy volunteers and that they are very grateful to her for continuing to take part – although she suspects they think she is a bit odd to keep coming back! She has developed a good friendly relationship with the research team and is impressed that they never seem to talk down to her, even though she does not always understand all the medical details of the research.
 
She finds the different things she has had to do in various studies very interesting, including keeping a food diary, having an MRI scan and a heart scan. It has been good to have things like regular blood pressure and cholesterol tests, and a calculation of her body mass index, so she knows she is pretty healthy. Sometimes things like the food diary or questions about her alcohol intake have made her rethink what she does.
 
Chris did not realise at first that she would be paid for her participation. It is not the reason why she continues to take part, though it helps when she takes unpaid leave to attend. The research group also pays for taxis to get her there early in the morning, and provides lunch when it is an all-day study. But her main motivation is helping find a cure for other people, probably not even within her own life-time. In her will, she has asked that her body be made available for medical science. She feels some of her motivation may come from her experience as a child of having a brother who was born blind, and who had many operations and treatments to try to find a cure. 
 

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