Biobanking

Elaine - Interview 04

Female
Age at interview: 49

Brief outline: Elaine has taken part as a healthy volunteer in several diabetes and metabolism research studies, where she has given blood and tissue samples. Healthy volunteers help researchers understand how influences such as diet and weight interact with our genes.

Background: works as a healthcare assistant. She is married with two sons aged 17 and 22. Ethnic background' white British.

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Elaine was first approached several years ago, when her GP surgery sent her a letter asking if she’d take part in a diabetes research study as a healthy volunteer. Elaine has taken part as a healthy volunteer in several diabetes and metabolism research studies, where she has given blood and tissue samples. Healthy volunteers help researchers understand more about how environmental influences such as diet and weight interact with our genes.  This will help to develop a better understanding of why some people are more susceptible to diabetes, heart disease and obesity than others and in the development of future treatments.

 
The first study involved having her height and weight measured, and giving a blood sample. It seemed like a small commitment so she agreed to take part. Now that she is on the clinic’s list of volunteers she is often asked to take part in further studies. Sometimes she has to eat no food before arriving at the clinic and then staff test her blood at regular intervals, including after giving her food or sugary drinks. Elaine quite enjoys going along – once the needle is set up for taking blood samples, she gets to relax with a magazine, and finds it quite restful. She has also got to know the research nurses well over the years, and enjoys seeing them and chatting to them. They have always been extremely helpful and given her all the information she needs so she trusts them.
 
As time has gone by Elaine has taken part in some studies that have been a bit more invasive. One involved having a sample of fatty tissue taken from her abdomen and thigh, but she was given a local anaesthetic and it really did not hurt. More recently, staff wanted a blood sample for an artery in her leg, and it proved difficult to get the needle in so they had to stop. She was left with a very large and rather sore bruise. This has put her off a little bit, but overall it was not very distressing and she still thinks she will go back another time. The doctor involved in that study gave her his phone number in case she had any more problems, which impressed her.
 
Although she is paid a small amount for taking part, that is not why she does it, and at first she tried to refuse payment. Now she sometimes gives it to charity instead. She does it because she feels it’s important to contribute and this is something she does not find too difficult. Other people might want to run a marathon for charity but she prefers helping with research. The fact that there is diabetes on her husband’s side of the family may also have influenced her. She feels the risks in this kind of research are low and minor, but she would feel differently about taking part in, say, a drug trial because of the risk of side effects. She declined to take part in the UK Biobank study mainly because the appointments were inconvenient. Elaine encourages others who are thinking about it to go along and find out more. You can always say no, and researchers would rather you went along to ask than that you did not go at all.
 

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