• Topic
• Medical research >> Biobanking >> Information and questions >> Information and questions

Information and questions

 

Before taking part in any research, people must be given an information sheet telling them what the study is about and exactly what they will be required to do. This should also describe any benefits or disadvantages there might be. People need information to be able to decide whether or not to take part. 

 

There was a mixed reaction among the people we spoke to about the information sheets they had received. Some thought the information was “clear”, “about right” and that there was enough information for them to decide whether to participate or not. However, others felt that the leaflets were quite lengthy, repetitive and that the language used was too technical for ordinary people to understand. A few sought extra help from a family member or friend to understand the information. The information sheet is important as it can encourage or discourage people from taking part.

• Medical research >> Biobanking >> Reasons for wanting to take part – personal benefit >> Reasons for wanting to take part – personal benefit

Reasons for wanting to take part – personal benefit

• Medical research >> Biobanking >> Reasons for wanting to take part – helping medical science & other people >> Reasons for wanting to take part – helping medical science & other people

Reasons for wanting to take part – helping medical science & other people

• Medical research >> Biobanking >> Deciding not to take part >> Deciding not to take part

Deciding not to take part

• 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 >> Donating samples after death for research use >> Donating samples after death for research use

Donating samples after death for research use

• Medical research >> Biobanking >> What’s involved in taking part? >> What’s involved in taking part?

What’s involved in taking part?

• Medical research >> Biobanking >> Ethical issues & future use of samples >> Ethical issues & future use of samples

Ethical issues & future use of samples

• Medical research >> Biobanking >> Communication and relationship with staff >> Communication and relationship with staff

Communication and relationship with staff

• Medical research >> Biobanking >> Getting feedback >> Getting feedback

Getting feedback

• Medical research >> Biobanking >> Messages to other people >> Messages to other people

Messages to other people

• Medical research >> Biobanking >> Messages to professionals >> Messages to professionals

Messages to professionals

• Clip
• Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Gill - Interview 01 >> Gill contrasts her experiences of two research projects. One member of staff could not answer her questions, but the other was much more knowledgeable

When Gill had breast cancer, she gave consent for a tumour sample to be kept for research, and gave an extra blood sample for blood marker assays. She has also taken part in the UK Biobank study.

• Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Chris - Interview 07 >> Chris thought the information was a bit “technical”. She doesn’t always want so much information and sometimes it can be off-putting when it doesn’t n

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 >> Healthy volunteers & pregnancy >> Chris - Interview 07 >> Sometimes it feels as though we get too much information – but each individual will feel differently about how much they need.

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) >> Jean - Interview 09 >> Jean (a former doctor) thinks that staff should make no assumptions about people’s knowledge, and ensure they explain everything clearly to everyone.

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) >> Gill - Interview 01 >> Gill feels informed consent is an essential principle, and is pleased that procedures have improved hugely since the Alder Hey enquiry.

When Gill had breast cancer, she gave consent for a tumour sample to be kept for research, and gave an extra blood sample for blood marker assays. She has also taken part in the UK Biobank study.

• Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Gill - Interview 01 >> It is important to be able to have a discussion with staff who understand how the samples may be used, and for researchers to give feedback on all the

When Gill had breast cancer, she gave consent for a tumour sample to be kept for research, and gave an extra blood sample for blood marker assays. She has also taken part in the UK Biobank study.

• Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Jean - Interview 09 >> Jean thinks people should be aware of how much time may be involved in taking part in research.

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 >> Healthy volunteers & pregnancy >> Julie - Interview 15 >> Julie felt that the information sheet contained everything she needed to know.

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 signed a consent form quite a while before she took part in the project. However, she knew she could withdraw from the study at any time.

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 routinely gives blood and tissue samples when she is asked to at the hospital. She has melanoma.

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.

• Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Karen - Interview 05 >> Karen never reads the information leaflets, and would like more guidance from doctors as to what she should do. But she knows other people would not f

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.

• Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Claire - Interview 06 >> Claire only realised when she arrived at the UK Biobank that her appointment might take up to two hours. She had to be home in time to take the cake s

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

• Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Claire - Interview 06 >> Claire thought that the important facts people need to know should be summarised on the first page of the leaflet. She said, “if it isn’t on the first

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

• Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Colin - Interview 18 >> Colin says most research won’t make you worse and there might be a chance you could be cured. But you need to make sure you understand what you’re doi

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.