Full list of topics

Recruitment and information :
What is biobanking and why is it important?
Types of biobanking sample
Being invited or volunteering to donate
Information and questions

Deciding whether to take part :
Reasons for wanting to take part – personal benefit
Reasons for wanting to take part – helping medical science & other people
Deciding not to take part
Attitudes to other types of medical research
Donating samples after death for research use

Donating :
What’s involved in taking part?
Ethical issues & future use of samples
Communication and relationship with staff

After donating :
Getting feedback

Messages :
Messages to other people
Messages to professionals

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Biobanking

Subject index

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.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Karen - Interview 05 >> Having cancer left Karen feeling that she had lost control. She feels taking part in research helped her regain control and fostered a stronger relati

Karen was diagnosed with melanoma in 1997. It came back in 2005 and she joined a clinical trial. Several times she has given extra blood samples for research purposes. She is happy to take part in any research into her condition.

Attitudes to other types of medical research

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Louise - Interview 21 >> Louise took part in biobanking as a healthy volunteer. She is interested in science and helping others.

Louise and her partner recently took part in biobanking, which involved donating samples of urine and blood.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Karen - Interview 05 >> Karen has taken part in clinical trials for cancer drugs before, but would be wary of a placebo-controlled trial. She would not risk taking part in a

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Jennifer - Interview 14 >> Because drug trials are tightly controlled, Jennifer says she would take part in one. She thinks it is rare that they go wrong.

Jennifer has taken part in two biobanking studies as a healthy volunteer: the UK Biobank, and a research programme on Transient Ischaemic Attack (TIA) and minor stroke.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Karen - Interview 05 >> Karen thinks if people believe medical research is sensible, safe and that the staff are trustworthy, they should take part, whether it is a clinical

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Louise - Interview 21 >> Louise’s views about animal research have changed as she has got older. She used to be against it, but now she has seen its benefits for members of he

Louise and her partner recently took part in biobanking, which involved donating samples of urine and blood.

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Louise - Interview 21 >> Louise found that the quality of information she got depended on the competence of the staff she discussed her questions with.

Louise and her partner recently took part in biobanking, which involved donating samples of urine and blood.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> David - Interview 02 >> David felt he would get better care for his skin cancer if he took part in research. His father had taken part in clinical trials when he was ill and

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.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> David - Interview 02 >> Taking part in clinical trials and biobanking made David feel that he might get better care during his illness. Biobanking research is easy to do.

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.

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Ruth - Interview 19 >> Ruth says she would take medication that was developed using animal testing. However, she is uncomfortable with certain animals being used in research

Ruth donated stem cells from her umbilical cord for medical research after giving birth to her son.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Karen - Interview 05 >> Karen was in a trial for melanoma which also involved banking blood samples. She describes her reasons for taking part in research as “totally selfish

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Richard - Interview 03 >> Richard believes more research should focus on improving quality of life rather than merely lengthening it. He feels this is a neglected area.

Richard was asked to take part in the UK Biobank study and decided not to. He has taken part in other medical research in the past.

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Chris - Interview 07 >> Although she is not sure about it, Chris thinks she might take part in a drug trial if she was ill.

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.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Colin - Interview 18 >> Colin explains that research staff usually aren’t under as much pressure as other staff and have more time to interact with you.

Colin was diagnosed with Hepatitis C in his early twenties. He has taken part in several medical research projects, including currently one which involves giving blood samples to be stored for research. He has also had epilepsy since he was a teenager.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Colin - Interview 18 >> Colin explains that research staff usually aren’t under as much pressure as other staff and have more time to interact with you.

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Shelley - Interview 17 >> Shelley doesn’t really agree with animal research, but says you have to weigh up the pros and cons. It would be difficult for someone not to take a dr

Shelley has a history of complications in pregnancy and lost her first two babies. She is grateful for the care at a special unit for high risk pregnancies, so she was very willing to take part in biobanking research there.

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Julie - Interview 15 >> Being asked to estimate how much she exercised in the previous week made Julie reflect on her behaviour and exercise more.

Julie has taken part in several research studies, including donating blood and urine samples to a local project to improve identification and treatment of women with pre-eclampsia in pregnancy. She also took part in the UK National Biobank study.

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Ruth - Interview 19 >> Ruth says she would take medication that was developed using animal testing. However, she is uncomfortable with certain animals being used in research

Ruth donated stem cells from her umbilical cord for medical research after giving birth to her son.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Karen - Interview 05 >> Karen was in a trial for melanoma which also involved banking blood samples. She describes her reasons for taking part in research as “totally selfish

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Chris - Interview 07 >> Although she is not sure about it, Chris thinks she might take part in a drug trial if she was ill.

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Richard - Interview 03 >> Richard believes more research should focus on improving quality of life rather than merely lengthening it. He feels this is a neglected area.

Richard was asked to take part in the UK Biobank study and decided not to. He has taken part in other medical research in the past.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> David - Interview 02 >> Taking part in clinical trials and biobanking made David feel that he might get better care during his illness. Biobanking research is easy to do.

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.

Medical research >> Biobanking >> Attitudes to other types of medical research >> Attitudes to other types of medical research

Attitudes to other types of medical research

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> David - Interview 02 >> David felt he would get better care for his skin cancer if he took part in research. His father had taken part in clinical trials when he was ill and

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.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Karen - Interview 05 >> Karen thinks if people believe medical research is sensible, safe and that the staff are trustworthy, they should take part, whether it is a clinical

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Louise - Interview 21 >> Louise works in clinical research. She is both professionally and personally interested in diabetes research because of her family history.

Louise and her partner recently took part in biobanking, which involved donating samples of urine and blood.

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Louise - Interview 21 >> Louise’s views about animal research have changed as she has got older. She used to be against it, but now she has seen its benefits for members of he

Louise and her partner recently took part in biobanking, which involved donating samples of urine and blood.

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Jennifer - Interview 14 >> Because drug trials are tightly controlled, Jennifer says she would take part in one. She thinks it is rare that they go wrong.

Jennifer has taken part in two biobanking studies as a healthy volunteer: the UK Biobank, and a research programme on Transient Ischaemic Attack (TIA) and minor stroke.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Jean - Interview 09 >> Jean felt the only “proactive thing” she could do when she was diagnosed with Motor Neurone Disease, an incurable condition, was to take part in resea

Jean has Motor Neurone Disease (MND). She has given samples to a DNA bank for MND, and is now part of a study using blood and spinal fluid, alongside other tests, to improve the diagnosis and understanding of MND.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Jean - Interview 09 >> Jean gets a “sense of satisfaction that I’m doing my bit”. She hopes by taking part in biobanking she will help others with MND in the future.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Jean - Interview 09 >> Jean felt the only “proactive thing” she could do when she was diagnosed with Motor Neurone Disease, an incurable condition, was to take part in resea

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Karen - Interview 05 >> Having cancer left Karen feeling that she had lost control. She feels taking part in research helped her regain control and fostered a stronger relati

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Karen - Interview 05 >> Karen has taken part in clinical trials for cancer drugs before, but would be wary of a placebo-controlled trial. She would not risk taking part in a

Medical research >> Biobanking >> Attitudes to other types of medical research >> Attitudes to other types of medical research

Attitudes to other types of medical research

Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Louise - Interview 21 >> There is a history of diabetes in Louise’s family which meant she was eligible to take part in a study about it. She sees research as an insurance pol

Louise and her partner recently took part in biobanking, which involved donating samples of urine and blood.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Karen - Interview 05 >> Karen thinks if people believe medical research is sensible, safe and that the staff are trustworthy, they should take part, whether it is a clinical

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Karen - Interview 05 >> Karen did not know how her sample was going to be used and, because of previous experience on chemotherapy trials, did not want to know.

Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> David - Interview 02 >> David felt he would get better care for his skin cancer if he took part in research. His father had taken part in clinical trials when he was ill and

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.

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