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Biobanking

What is biobanking and why is it important?

Biobanking refers to the process by which samples of bodily fluid or tissue are collected for research use to improve our understanding of health and disease (see ‘Types of biobanking sample ’). Other information, such as height, weight and questions about things that may have a bearing on health (e.g. family history and lifestyle) may also be recorded at the same time, to provide the context for the samples. Often the samples are kept indefinitely or for several years, depending on the study, so that long term future research can be carried out. The researchers may track the health of the participants by looking at their past and future medical records, but only if people have given them permission to. 

The Human Tissue Authority has useful information for people interested in donating for research and The Nuffield Council on Bioethics has also recently issued a useful report called ‘Human bodies' donation for medicine and research (see 'Resources' section).
 
Some projects, such as the UK Biobank (see 'Resources' section), recruit large groups of healthy people from across the population, and then use the samples over time to see if we can work out why some people go on to develop particular illnesses or conditions while others do not. 
 

Claire was honoured to take part in the UK Biobank. She says its aim is to find out about factors...

Claire was honoured to take part in the UK Biobank. She says its aim is to find out about factors...

Age at interview: 52
Sex: Female
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And they ask you all sorts of questions about yourself, and there are some where you think, “Oh, God. This is very personal.” And then you have to remind yourself that this is about research, that you have to have confidence in the confidentiality and that actually, if enough people answer these questions we are going to get a picture about our population, and that if we can do that, we can understand what the different factors that influence their health and their lifestyle are doing. And it will better enable us to improve the health of the population, which of course is what research is all about. So it is an honour to be involved in doing something like this.
 
So they ask you, you do the forms, you do the interactive bit. Then I thought it was all over, and in fact that’s, you find out you’re only half-way through, because then there’s a whole series of other physical things. You have to give blood. You have to pee in a little pot. You have to go and do eye tests and breath tests, and they put your foot goes into an ultrasound machine, so they measure the density of your bone, and they give you some results as you go along. And you’re seeing different people for each stage. 
 

Jennifer explains that the UK Biobank aimed to collect health data on a large number of the...

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Jennifer explains that the UK Biobank aimed to collect health data on a large number of the...

Age at interview: 62
Sex: Female
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Well, as far as I remember the invitation came through the post, and it explained what it was all about, a wide-ranging collection of health data on a large section of the population, which would be looked at over the coming years. It seemed like a useful project, and it didn’t take up a great deal of time and it was local, so. And then having decided to do it, I then discovered that lots of other people that I knew were also doing it, so yes.
 
And what can you remember of the actual appointment when you went up for the tests?
 
Well, it was all very efficient and, you know, I wasn’t kept waiting at all. It was straight into the – well, I can’t actually remember how it, what we did first, but I mean I guess somebody must have taken your name or your number or something. But I just remember being moved round from one test or whatever to the next, and there wasn’t much waiting around, and it was all very efficiently done. It didn’t take very long at all.
 

Gill donated to the UK Biobank. It aims to uncover risk factors and improve diagnosis of illnesses.

Gill donated to the UK Biobank. It aims to uncover risk factors and improve diagnosis of illnesses.

Age at interview: 55
Sex: Female
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Because philosophically I know about Biobank and I think it is potentially a really good resource for large-scale diagnostic and therapeutic research. I just think it’s probably what you have to do, to look at how populations, you know, what the risk factors are in populations and how we can better cope with diagnosing and predicting perhaps populations at risk of different diseases. 

 
And so philosophically I felt very positive about it. So as I say it was a decision based on, “Is there anything in here that I’m not happy with?” And at the end of the day I did the whole lot [laughs] and feel quite comfortable with that decision. And now I’m very interested in following up to see what sorts of research actually are done with this population.
 
 

Louise explains that the project she participated in aimed to collect information about healthy...

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Louise explains that the project she participated in aimed to collect information about healthy...

Age at interview: 44
Sex: Male
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Well, I saw a poster, which I was intrigued about because I didn’t quite understand what the poster was advertising, and I asked a colleague about it, and she, she told me it was for a medical research project, and that they were looking for volunteers to donate blood samples and do some baseline, get some baseline information about their age, height and weight and general health. And that then that information would be used to help other trials, and to build up a kind of database of people who are well, with no health problems, and people who might be invited to take part in other trials, who either have an illness at the moment or who go on to develop an illness. 
Other biobank projects are focused on specific conditions, and may involve both healthy volunteers and people with the condition in question. Samples may be collected initially for one very specific research study, and then be kept for future use in other research.
 

Jean took part in two studies about Motor Neurone Disease (MND). She describes how the studies...

Jean took part in two studies about Motor Neurone Disease (MND). She describes how the studies...

Age at interview: 56
Sex: Female
Age at diagnosis: 50
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Well, with the DNA bank it’s a long-term storage facility, so basically it’s going to be available to researchers throughout the UK, and with collaboration possibly worldwide, and they’re going to be able to sort of continue the lines, the cell lines for a long time. And so it’s definitely a long-term storage proposition that one’s contributing to. And I’m also well aware that they’ve got a multitude of samples, some of which are going to be drawn on in the near future, maybe particularly with things like familial MND, where they’re trying to look for the genes that cause the defects. And for those who are sporadic, who are maybe slightly older, our samples might not be used straight away. They may be further down the line that they need them. But I’ve got no problems with that. As far as I’m concerned, once I’ve donated the sample it is entirely up to the researchers and the Biobank source to decide how they’re used, and I have no particular sort of feelings that they should be used, you know, for one thing and one thing only. Not at all. It’s there to be used as seen in an appropriate manner, in a timely fashion, whenever that time might be. I think with the, with the biomarker study it’s a five year study, and obviously it’s a slightly different proposition in the sense that the samples are going to be compared from all the ones that are taken and to see if something specific comes out that is a marker for MND. So I would expect that we may know a little bit sooner the results of our collective I suppose samples, as compared to the Biobank, which might be in 15 years’ time before, you know, a sample I donated was used, whereas with this I would hope that we would know as a community the outcome of the study, whether it’s in a positive or a negative light, but a slightly more short-term use of the samples.
 

Paul is participating in a long-term study to improve the understanding of Motor Neurone Disease ...

Paul is participating in a long-term study to improve the understanding of Motor Neurone Disease ...

Age at interview: 63
Sex: Male
Age at diagnosis: 57
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Over a period of a number of years I have been visiting my specialist. I’ve volunteered for numerous studies and certain questionnaires and so forth, and this particular one drew me to it for what it could achieve in the long run. And it appears that it’s vital to know that existing people who are living with MND are able to give various samples, and have various studies done on them to help research. And it’s an ongoing voluntary process, in which every number of months you are able to see how the illness has progressed and hopefully find what is causing it to progress. I’m now in my second year of the study, and I will continue to go along for as long as I am physically able to. 
 

Gareth took part in a study to find out about healthy people’s metabolism, as part of a diabetes...

Gareth took part in a study to find out about healthy people’s metabolism, as part of a diabetes...

Age at interview: 49
Sex: Male
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But, you know, the, the driver for this research seems to be measuring how healthy people work. So what’s the metabolism in a healthy person? And I do feel that’s got to be important. I’m an engineer and we work on big diesel engines. And one of the hardest things to do is somebody comes along and says, “This thing’s broken.” And you ask them, “Well, how is it supposed to work?” And they haven’t really got an idea. And, you know, so I can see, you know, parallels, medical needs to know how a healthy body works and a range of healthy bodies. Add a bit from below medical needs to know how a healthy body works and a range of healthy bodies. I mean, I like to pride myself on keeping myself healthy. And I suspect not a lot of healthy people would necessarily volunteer for this sort of thing. You get people who are quite obsessive about their health and they probably wouldn’t want to go on something like this. And I just felt that I had something to offer, in a reasonably healthy body, getting on in years, and I just felt it would be a useful data point for them.
 

Ruth volunteered to donate umbilical cord blood for stem cell research when she delivered her...

Ruth volunteered to donate umbilical cord blood for stem cell research when she delivered her...

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So the, I mean, the information sheet was quite self-explanatory. I mean, it basically said what they wanted to use the stem cells for and said that they wanted it for research to - well just for research purposes, I think. It wasn’t very, it wasn’t specific as to what they were researching into, but from all the reading that I’ve done and I sort of know what they’re doing research on stem cells for, and so I didn’t have any problem with that whatsoever. And all they were asking to do was basically collect the placenta – well, the umbilical cord, because it’s cord blood - once you’ve given birth, and you give a blood test and that’s it. And it’s very, very, there’s no intervention, there’s no - nobody’s harmed. There are no fetuses aborted, nothing like that, and so I didn’t have any objection to it whatsoever. I thought, “Well, you know, they’re only going to chuck it away anyway, so why not do it?” 
 

David has skin cancer. Samples from his tumours were examined as part of a study to see how...

David has skin cancer. Samples from his tumours were examined as part of a study to see how...

Age at interview: 58
Sex: Male
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Yes, well, when the tumours were taken out of my leg - and I’m not sure about the skin cancers, I don’t know what happened to those - but I know for sure that they kept samples of the tumour, of the tumours, rather, and when I then started to my treatment for, on the trials, they asked if they could send off the samples of the tumours to understand better the proteins. Because the big problem for them is understanding how different proteins react to the treatments, because there’s a feeling that there’s a key there somewhere, and that’s why some treatments work better with other people and not with others so, yeah. I mean it’s quite interesting, yeah.

 
So they were linking it to your individual results in that trial?
 
Definitely, definitely. They wanted to know before they started whether - on the first trial - whether the proteins on the surface of my tumour actually were the sort that they thought they could treat.
 
So again it was directly related to my treatment, I suppose, you know, there was possibly a direct benefit to me, yeah.
Sometimes family members of people with a particular condition are also recruited, so that researchers can compare their health and medical history with those of people who have the condition. 
 

Ian’s wife took part in a study about MND as a healthy volunteer. She was willing to have a...

Ian’s wife took part in a study about MND as a healthy volunteer. She was willing to have a...

Age at interview: 54
Sex: Male
Age at diagnosis: 51
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Right, well, on the first occasion when we were approached about giving blood samples and doing MRIs and things, they were looking for healthy people to take part as well. So we decided that as a couple we would take part. She was very happy to do that. She actually went further than I did. She was prepared to let them try the lumbar puncture process but, unfortunately there was a difficulty so it didn’t, ended up not happening. They did try, but she was uncomfortable so - and, again, you see, that’s evidences to the caring of the team. They tried to take a sample from her. They realised that she was in discomfort and immediately stopped it, so you know, that gives you confidence to do things going along. But so the first time I went [wife] did exactly the same tests that I did.
 

Jennifer took part in a stroke study as a healthy volunteer after her husband had a minor stroke.

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Jennifer took part in a stroke study as a healthy volunteer after her husband had a minor stroke.

Age at interview: 62
Sex: Female
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Well, the [stroke study name] I wouldn’t have known about if I hadn’t gone with my husband who’d had a stroke, but having been told about it, and told that they needed volunteers, I volunteered – again, not for personal benefit, really, but to, you know, provide information to help them find out more about people who have strokes, and why they have strokes, and you know.
 
And I was very impressed, I must say, with the treatment he got in the stroke study. They were very good, and did a lot of investigations. So yes, having gone with him on the first occasion, and I think the second occasion, I saw what they were doing and, you know, thought if they were having trouble recruiting volunteers I’d try and help.
 
So they actually approached you, did they, and said we are looking for volunteers?
 
Well, they gave us some information about [study name], and one of the pages said that they were, they needed healthy volunteers as controls, and if you were interested in doing it to, I think there was a number to ring, and asking you to, if you knew anybody else who might be interested, to get them to ring too.
 
And what’s it actually involved for you?
 
Just one visit where they - well, they asked me, you know, there’s a sort of set of mental tests that you have to go through, which are actually the same as the ones that I’d sat through with my husband after he’d had his stroke [laughter], just to make sure that your mind’s working properly, plus taking your blood pressure. And it didn’t take very long at all.
 
And that’s....
 
Just one visit and that was it.
 
That was it, no further visits?
 
No.
 
No, and did they take a blood sample?
 
Oh they did, yes, they did take blood samples, yes.
 
Yes, in fact they – well, they have, I don’t know what it’s called, but they have a thing where they sort of take a blood sample and it goes into different little pots for different tests.
The amount of time involved in taking part can vary depending on what type of donation is being made and how much additional information or testing is needed. As Jennifer explained above, sometimes only one short visit is involved. Sometimes people are invited (or can make a specific appointment) to take part at certain times or can donate samples during routine hospital care.
 

Julie donated urine as well as blood samples during her pregnancy. These were usually done...

Julie donated urine as well as blood samples during her pregnancy. These were usually done...

Age at interview: 45
Sex: Female
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So you actually asked them if there was any research going?
 
Yes.
 
And what did they tell you when you asked that?
 
So the clinic sent me to see the research midwives. The research midwives thought for about 10 seconds and said, “Oh well, here’s one that you’re qualified for.” And I came into the category of a slightly higher risk pregnancy because of having had IVF. And the research midwives were terribly apologetic that this would involve an extra blood test and an extra urine test every month, and a bit of going out of the way on my part, and I reassured them that I was very, very happy to do all of this. And in fact the blood tests could usually be done when I went to the antenatal clinic, so there were only a few occasions when I had to have an extra blood test.
 
And that involved an extra visit, did it? You had to go off again to the hospital?
 
Sometimes yes, sometimes no.
 

During her pre-surgery appointment, Gill was asked to donate the surplus tissue from her cancer...

During her pre-surgery appointment, Gill was asked to donate the surplus tissue from her cancer...

Age at interview: 55
Sex: Female
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The first one I was involved with was the donation of surplus tissue from my cancer operation. So basically they asked for any surplus that was left over from whatever testing they needed to do during the operation or after the operation, whether it could be banked in order to do research. And that was fine. I think it was introduced to me in the pre-operation visit to the cancer clinic, and somebody sat down and talked it through with me, which was fine and, you know, I didn’t have any problems with that at all. So that was the first one. 

 
And did, when they took your consent, did they tell you whether it was for a specific bit of research, or just for banking for any future uses?
 
No, it was for banking for anything, really, any future uses. Although I think it was to do with cancer research, although I’d probably need to go back and check the information. But I think I, it was to do with cancer research.
 
Whilst most people said it didn’t take up a great deal of time, a few warned that it can take quite a while in some studies, and recommended reading the information carefully to be sure what was involved. 
 

Claire only realised when she arrived at the UK Biobank that her appointment might take up to two...

Claire only realised when she arrived at the UK Biobank that her appointment might take up to two...

Age at interview: 52
Sex: Female
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And so on the morning I - it was an early, made an early morning appointment. I did as I usually do on a Saturday, I whipped up a cake, a rich fruit cake, whacked it in the oven and then went off to the appointment. And as I arrived, drove to the appointment, which is only about ten minutes’ drive away, I read on the paper where was I supposed to go, and of course I saw it said, “You’ve got to allow two hours for this.” So I thought, “No way is this going to be able to take me two hours”.
 
But of course I’d got my cake in the oven, so I knew couldn’t take very long and so I knew I was under pressure, and it probably would have been better if how long you’ve got to give was a bit more prominent. On the other hand, I wonder, if I’d have read that, whether I would have done it, because I thought I was going to pop along, give a blood test, answer a few questions and whip away. And if it said two hours would I still have done it? So all in all for me, being a person that rushes around doing everything, it happened to work out for the best. And at no stage did I have to wait for anything, although I did talk to one woman at the end who said to me, “How long have you been here? Because I’ve been here a long time, two and a half hours.” And I said, and I hadn’t because I’d whizzed through the whole thing, so I was in there for an hour and a half, and so I got home and got the cake out, which was fine.
 

Jean thinks people should be aware of how much time may be involved in taking part in research.

Jean thinks people should be aware of how much time may be involved in taking part in research.

Age at interview: 56
Sex: Female
Age at diagnosis: 50
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So I thought I’d volunteer and I found it quite an interesting experience. It’s, I think one’s got to be well aware of the time element - I don’t mean in terms of the number of visits per se, I mean it’s twice a year - but you’ve got to be prepared to give up, you know, five hours plus to get through all the tests that are needed, and I knew that as somebody with slowly progressive MND then I was probably better placed than many to be able to cope with that.
In addition to donating samples, people can also be asked to provide other information (e.g. height, weight, blood pressure and heart rate), answer questions about their lifestyle, or take part in other tests or procedures (e.g. eye tests, tests of mental function, scans).
 

Ian, who has MND, had an MRI scan as part of a study to understand brain function.

Ian, who has MND, had an MRI scan as part of a study to understand brain function.

Age at interview: 54
Sex: Male
Age at diagnosis: 51
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When you go in the MRI - you know, it’s not everyone’s favourite thing to go in the tunnel - absolutely no issues. They talk to you the whole time, make you feel comfortable, explain to you what the tests are about. That is so important that you understand why they’re doing things. They’re not, you know, you’re not just there, “Well, we’re going to do this, but we’re not going to tell you why.” It’s the complete opposite. “We’re going to do this test because we want to find out the relationship between your sight and your brain” or “We’re going to do this test because we want to test why the right side of the brain is not talking to the left side of the brain”, or “why there are, why MND crosses over the right and the left.” All that sort of thing was explained to me. It was, it was very, very interesting. 
 

Tony donated a blood sample as well as providing some additional information.

Tony donated a blood sample as well as providing some additional information.

Age at interview: 33
Sex: Male
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We turned up, we were weighed, we, our blood pressure was taken, our heart rate was taken, our height was measured. It was basically those sorts of measures, basic measures. And I think some blood was taken as well. And the blood was later tested for various things. And we got some, and we got a report back saying where we stood in relation to, to all these measures in terms of, I think , you know, where our blood pressure was, where our body fat ratio was and all those sorts of things. It was basic metrics, I suppose, for medical health.
 

Chris urges people taking part in biobanking projects to give honest answers on any questions...

Chris urges people taking part in biobanking projects to give honest answers on any questions...

Age at interview: 57
Sex: Female
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If you do a Biobank, I think you need to be honest with your result, with your answers. There’s no point in doing it and then not telling the truth, because it’s a bit like statistics, you know, it’s rubbish in and rubbish out. If you’re going to do it, do it properly, and enter into it properly, so that people understand what really is going on in your family or in your body.
Some people become involved in giving samples for studies which involve several visits. In projects such as the UK Biobank and other general biobanks people sometimes get asked if they would like to take part in further tests or questionnaires to help researchers understand specific aspects of health. Some of the healthy volunteers we spoke to had been invited to take part in several different ways.
 

Louise and her partner both took part in a study that involved wearing activity monitors.

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Louise and her partner both took part in a study that involved wearing activity monitors.

Age at interview: 44
Sex: Male
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The original project is for bio-data collecting, getting samples which they then hold for future clinical research, but the medical team who were running the project that we signed up for originally also have links with the local university sports department, and they were testing out activity monitors, two types of activity monitors, and so they asked us if we would like to take part in that. And we thought, “Yes.” And that was good fun, actually. That was, we were asked to wear, respectively, an activity monitor on our wrist and an activity monitor on our ankles. And then they plotted the intensity and the amount of activity that we did over a period of a week, and we had to keep a diary.
 
And, actually, I could see the benefit of that, professionally, because I’m a research nurse, and I work as a research nurse with children and we do use those sort of monitors with children. So it was good, professionally, for me to have a kind of insight about the annoyance, how little things can annoy you, when you’re wearing such devices. But also one of the major issues that’s affecting healthcare strategy in the UK, at the moment, is concerned with obesity and activity levels. So if we can help in some way in them getting an idea of the best way to actually - because we don’t actually know how much different people, activity different people do, because it’s a difficult thing to record formally.  So if I could help in some way in that, that was good.
 
And it was funny, yeah. Apparently my statistics - because I was training for a marathon at the time - [laughs] so my statistics on how much I did and the intensity I did broke all their records [laughs]. I’m slightly nerdy, so [laughs] I’m really proud of that, a nerdy achievement, yeah, yeah.
 
[laughs] So that was actually a separate study that you got involved in very quickly after this one?
 
Yeah, because.
 
Sort of snowballing from one to the next?
 
Yeah. And then they saw us as ideal candidates, because they realised that we would put those devices to the test. And we did. Because one of the devices could be worn in, when swimming, one of them couldn’t, and one of them I could wear at work, when I was working within a clinical environment, on the ward, but one of them I couldn’t wear at work. So lots of things like that it was showing. And one of the devices - my partner is a very keen cyclist, but one of the devices I don’t think worked so well for cyclists but it worked, one of the other, the other device did, because of the range of movement that was involved.
 
So I think they were able to get lots of really useful information from us about the type of activities, every day activities, that those devices, the pros and cons of those devices in different situations with different activities.
Before agreeing to take part in biobanking, people were always informed in writing about what they would be expected to do, and could always say no to further involvement. (See ‘Information and questions’).
 
Information and samples gathered in biobanks can be shared with researchers in other countries across the world. This may include researchers in universities, government institutes or industry (such as pharmaceutical companies researching new drugs), but samples cannot be sold for profit.

Sharing information in this way means that research can be conducted on larger numbers of people. This could lead to a better understanding of health and the development of new treatments. (See also ‘Ethical issues and future use of samples’).
 

David donated blood to a worldwide biobanking project.

David donated blood to a worldwide biobanking project.

Age at interview: 58
Sex: Male
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And with the blood, that was a slightly different thing, because that’s gone off, that wasn’t related to me. That was a general study, and I signed it, I think two or three times now, that they can use part of the blood for the research. Now I could withdraw from that at any point, I don’t have to continue with it, but that, and that’s gone off, that goes off to somewhere in California, I think. It’s a big study that’s going on there that is taking place worldwide, I think. I don’t really know, I can’t remember now - they did explain it to me – but I suspect again it’s to do with this business of looking for evidence of the cancers in - what do you call it – metastasis. I seem to remember something about that.



Last reviewed February 2016.
Last updated February 2014.
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