Biobanking

David - Interview 02

Male
Age at interview: 58

Brief outline: David was diagnosed with skin cancer 6 years ago in 2004. He has consented to both blood samples and tissue samples from his tumours being used for research.

Background: David is a geologist and is married with 3 adult children. Ethnic background' White British.

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David was diagnosed with skin cancer about 5 years ago, in 2004, and had surgery to remove four or five cancers. Three years ago, it was discovered the cancer had spread to his lymph system. He had further surgery to remove tumours from the lymph nodes in his leg, but unfortunately this was not successful, and he was told he might have only six months to a year to live. He was referred to a cancer research team at a specialist hospital to see if there were any clinical trials of experimental new treatments he could join which might prolong his life.
 
Since then David has been in several trials and other research studies. He has declined to take part in a trial only once, because of the likelihood that the new treatment would cause serious side-effects. He has been on his current drug trial for a year, and recently felt well enough to go back to work. Before that he was in a chemotherapy trial for 6 months. [Clinical trials are designed to test new treatments which seem promising but where there is not yet enough evidence on how effective and safe they are. You can read more about them on our website about ‘Clinical trials’ www.healthtalkonline.org/medical_research/clinical_trials].
 
When he started taking part in trials, the research staff asked for his permission to send off samples from his leg tumours for analysis. David does not remember whether he was asked for permission to keep the samples at the time he had the surgery, but was glad that they had been kept, as it was important for the research project. The researchers wanted to find out about the kind of proteins present on the surface of his tumour, because they think this may be one reason why some people respond better to certain treatments than others. David had no problem at all with this kind of research, which he felt could benefit both him personally and others in future. The tumour had already been removed, so he did not need any extra procedures.
 
He has also consented to extra blood being taken for research when having blood tests as part of his treatment. This is unlikely to have any direct benefit for him, but it’s easy to do and may help future generations. He has no worries about the samples and information about him being kept, as he thinks the chances of them being misused in any way are very small. He feels more people should take a relaxed attitude to tissue and blood samples being used for research, and sometimes thinks we have gone too far in needing to get people’s consent for every minor thing.
 

David would like to know more about the results of research, and about the detail of why it is being conducted and what staff are hoping to find. He has been able to get answers to most of his questions, but the information leaflets were not written in a way that made it easy to find what he wanted to know. He sometimes feels research doctors keep their patients a bit at arm’s length, whereas the research nurses are more informal and friendly. David thinks research ought to be seen more as a partnership or an exchange between participants and researchers. 

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