Biobanking
What's involved in taking part?
Biobanking involves the donation of blood, tissue, fat, spinal fluid, or other bodily fluids, such as urine. For more information on the types of samples that people can donate, please see ‘Types of biobanking samples’.
Chris describes the process of donating fat samples in detail. She is a healthy volunteer.
Chris describes the process of donating fat samples in detail. She is a healthy volunteer.
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I’ve had two lots, actually, where I’ve had biopsies. The last one... I’ll tell you about, yeah, just the biopsy, but there was a little bit extra that I will tell you, because I’m not sure if it’s linked into it or not – again, because I don’t understand the medical bit of it. But I’ve had two lots of biopsies and the last one was on my stomach, and the good bit of news for me is that they’re looking for fatty bits and I apparently don’t have much fat around my stomach, [laughter] which is really nice for me.
But it’s like just a normal injection needle put in, but what they’re doing is they’re putting like a catheter-type thing and they draw off fluid. And the last one in particular, what they had to keep doing to draw it off, they had to wobble it – well, they give you a local anaesthetic first of all. They do give you a local anaesthetic, and again they ask you at every step of the way, “You don’t have to do this. You can stop if you want.” So, you know, you get a local anaesthetic sort of into your tummy, they put the needle in, and they wobble it and it’s just to get presumably the fluid or whatever just to come out, suck it out. I was asked if I wanted to see it. I have to say, because the girl, the nurse that did it is the one that I’ve got quite friendly with, and she said, “This is a really, really--” - oh, and you have to keep very, very still --“this is a really, really good sample. Do you want to see it?” “No, thank you. I don’t. I don’t want to see it. You just do what you have to do with it. No, I don’t want to see it at all.”
Jean describes the lumbar puncture as weird but not unpleasant. She says the worst part of it is...
Jean describes the lumbar puncture as weird but not unpleasant. She says the worst part of it is...
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And then it’s, then you go up to the neurology ward. Where you’ve been in the scanning unit for most of the time before that, then you go up to the neurology ward to have a lumbar puncture. It is not compulsory to have a lumbar puncture and they make that very clear, and also the fact that you agree to it one time means there’s no compunction on you to do it again. If you want to opt out you can do so, and there really is no pressure whatsoever. But for me it, it’s not a worrisome experience at all. It’s a question of sort of lying fairly still and as curled up as one can manage for a few minutes, and I think the worst bit is probably the cold disinfectant on your back, really.
A very tiny, tiny injection of local anaesthetic, and to be honest I’ve always been one who once the local anaesthetic’s working it’s fine, it really is. And it’s the same if I go to the dentist. I’m not, you know, once an injection’s working they can do what they like, really. Just so long as I know that everything’s nice and numb, that’s fine. And it’s just this sort of feeling of a bit of prodding in your back, really, which is not - it’s weird, but it’s not unpleasant, and I don’t, I personally don’t find it a difficult process at all. But I do know that for some people it’s a step too far, and the great thing about it is that the researchers know that and they really do not put any pressure. In fact there’s more pressure sort of, you know, or more facility for you to opt out than opt in.
Participants can be healthy volunteers or people with illnesses or long-term health conditions. For the people we spoke to who had health conditions, biobanking donations were sometimes made alongside their regular appointments.
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...
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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.
However, others were invited to attend specific appointments at a designated time and place. (See also ‘Being invited or volunteering to donate’).
In biobanking projects that involve more invasive procedures including donating blood, tissue or fat biopsies, people risk experiencing some side effects, but these are usually minimal. One of the most common side effects people reported was bruising or discomfort. Lumbar punctures can be uncomfortable for some people. Paul was not put off by this, but Roland was.
The possible discomfort from a lumbar puncture did not put Paul off donating. He felt like he was...
The possible discomfort from a lumbar puncture did not put Paul off donating. He felt like he was...
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Lumbar punctures can be quite unpleasant. What, what would you say about the process?
I have a good pain threshold and my one thought always is, “I’m going to help, no matter how uncomfortable, how long it takes, I will.”
So my day is already a good one before I arrive at the destination so, you know, it’s a bit like for some people if you go on a holiday there’s bound to be something that doesn’t sit well or is uncomfortable somewhere, and it’s whether you can have a mindset that tells you, “It’s important that I enjoy this holiday. I’ve waited a long time. I’ve, it’s important to me”, and let certain things not play on the mind. So any uncomfortable or hard part of the day is really not uncomfortable.
So it’s kind of like a sort of a minor part of it, really, as far as you’re concerned.
Yeah, and the - of course it’s, I’m pretty good at dentists and any sort of injection I have, so I’ve always had a good pain threshold.
Roland decided not to have a lumbar puncture as part of a research study on Motor Neurone Disease...
Roland decided not to have a lumbar puncture as part of a research study on Motor Neurone Disease...
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One thing I don’t take part in and that’s - I’ve forgotten what it’s called.
A lumbar puncture?
Oh yes, sorry, yes the lumbar puncture. I had one ten years ago when I was first diagnosed and it wasn’t a very pleasant experience. The consultant asked if I could have some, or if he could have some trainee doctors in to help me – well, not to help me, to take part in the process to see what a lumbar puncture involved. And he also said that whatever I did I mustn’t, whatever I do I mustn’t move. And so we started off with the puncture, and he and the trainee doctors all had a chinwag about what the weather was like that day or whatever, forgetting me, the patient, and I started getting a bit panicky, I was - and in the end I shouted out to one of them, or shouted out to them, “I’m the patient here. I’d like a little bit of confidence-building, please”, and then I got, well, one of them started talking to me, which is all I wanted, just reassurance and comfort, comforting. But it’s put me off lumbar punctures from then on. And I’ve heard plenty of good results with lumbar punctures, but in the [Motor Neurone Disease] study I’ve been told it’s not essential for the study for me to have a lumbar puncture, so I’ve decided I won’t.
People also explained the side effects that were more specific to biopsies. They said that they had a puncture mark where the needle was inserted and some swelling in that area. Again, most people said they were not put off by this, although Elaine said it made her think twice. However, as Elaine said, ‘The biggest risk is that you might come away with a bit of a bruise….and that’s right down at the bottom of the scale, isn’t it?’
Elaine reflects on how the studies she has taken part in have become more invasive over time, but...
Elaine reflects on how the studies she has taken part in have become more invasive over time, but...
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Well, it’s been a wee while since I did one and I can’t remember when, I’d have to go and look up, but I would say that as time has gone on they have got more and more in depth. So I suppose like you start off maybe just having a blood test done, and then it’s got more and more and more involved. And I think from what one of the nurses said to me it’s that when they’re doing their research they obviously are looking at different things and people’s, you know, like blood might match up to something that they want to then move on to the next stage, or whatever. But they always tell you in advance what they’re going to do. The last one I did, did involve, it was quite invasive, and they did tell me that it was very invasive, and I read through it and I thought about it and thought about it, and decided that, yes, I would go ahead. There was like one instance where they were sort of taking blood from an artery in my leg that they just found it quite difficult to do just because of, I think, the anatomy of it all more than anything. And they decided that, you know, that it wasn’t going to work, so they stopped, you know. I was left a little bit bruised and a little bit sore, but they were very, you know, they were just very kind and made sure that I was okay and that I was happy, and that they gave me, the doctor even gave me his number and said, you know, “If you have any problems you can phone at any time”, and you know. But it was at the end of the day it was a bruise, you know. And it goes.
Has it put you off a bit?
It did put me off slightly at the time, yes. I think - and I think because they’ve got more invasive as they’ve gone on you do start to think, “Mm, do I really want to go through this?” But having said that, if the letter came through next week or in a month’s time, I’d probably do it again.
I do think, [mm] well, yeah.
I do think that [sighs], you know, it’s a bruise, at the end of the day. You know? And I know - because, I think because I know them so well now, I know that they wouldn’t, I trust them not to do anything that, you know - I think it - I know that if they felt that they weren’t going to get what they wanted that they would stop. And likewise I also know that if I turned round and said, “Look, I’m really sorry. I’ve - enough is enough.” I know that they would be, they’d stop as well.
So that trust...
Yes.
...coming from knowing them is quite important?
Yeah, and I suppose as well - well, the way they’ve done it, I don’t know if everybody does it that way - but I suppose you start off that they’re not asking, you know, the actual research study day isn’t asking for very much, and it just gets slightly more in depth as you go on.
Chris says she often gets a lump after having fat biopsies. The swelling usually goes down in...
Chris says she often gets a lump after having fat biopsies. The swelling usually goes down in...
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But the next one - then I’ve had a second biopsy on the same, on the same day. They did another one. And that was at the back of me, and that one wasn’t quite as good. That one I actually felt it a little bit. As they put it in she said sometimes they catch a nerve. And it is quite, it makes you ooh [sharp intake of breath], like that, but it’s still, you know, it’s minutes, it’s seconds. It’s not, it’s like being a blood donor, you know. It’s a little pinch, it’s a little scratch, but they’ll move away. That one she said wasn’t so good. The down side is afterwards you have to press very hard for about twenty minutes on the actual hole, and that’s to stop or to reduce the bruising. And also you do quite often get a lump, and it’s quite a big lump, and that stays more than likely for about 2 weeks.
I’ve never ever, they also give warnings about infections. They go, a lot of effort is put into saying about infections, and they obviously disinfect everything and use all those really cold wipes and stuff. But, you know, you have to really press hard to stop any bleeding and to stop I suppose whatever else might be coming out. And you sort of, you sit there for like 20 - and 20 minutes is a long time to put pressure on something, and you have one nurse doing the pressure and then the other nurse is doing something else. But at the end of the day, yes, I had bruises, but they go after two to three weeks and they always put a plaster on it.
Has there ever been a point where you’ve thought, “Oh, that’s a bit too painful, a bit too much”?
No, no. It’s uncomfortable. It’s not painful, you know, it’s a bit of discomfort, a bit like blood donoring, that’s all I can relate it to, really. You know, there’s been a few things were you think – well, I suppose there was one, actually, not the last time I did something, the time before. That was a biopsy they were doing. And... I can’t remember what the doctor’s name was – well, that’s not relevant anyway. But he was really, really good but whatever he was doing didn’t quite work, and he did keep wobbling this thing, and it did go on for a bit, and I think he felt bad in the end, but I just said, “Carry on”. And in the end I did have I mean a really, really big bruise after that, I had a big heavy lump. But you see even that, if they always tell you, stress again, if after two weeks or after any time if you feel uncomfortable when you get home, phone them up, you know. So again, they would, there’s always the after care there if you need it, so it’s not as if you’re left on your own, just sort of “Oh well, tough”, you know. They do stress that “If you have any problems, do come back.”
Andrew felt a shooting pain in his arm during a liver biopsy for which the nurse gave him some...
Andrew felt a shooting pain in his arm during a liver biopsy for which the nurse gave him some...
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Can I ask you what the liver biopsy is like? Tell me what it feels like and, to go through?
Well, what they do, you have to go in hospital. You can go in hospital, you can have somebody with you, or you can do it overnight. See, because my missus is disabled, I had to do it overnight. And you go in, you can’t have nothing to eat or drink. It’s like you’re fasting. And they inject you, numb you on your right-hand side, and if you saw the size of the needle, you’d have to turn your eyes away. They numb you and they push the needle in. But prior to that, doing that, they said to me, “Can you give some for research?” So, “Okay, get on with it.” The first one, you don’t feel. The second time they go in, well, the last time I had a biopsy, the second time I had pain in my shoulder. It just went [sound and gesture of shooting pain]. I had pain down there [indicating] and I had to ask the nurse, “Can I have some painkillers?” And they gave me pethidine to get rid of the pain. Without that - but I had to, when you have the biopsy you’ve got to lay on your side for six hours. Because I’m a smoker, I wouldn’t stay on my side for six hours. I waited a couple of hours and then I got up and went out. And it’s very dangerous, because you could bleed. But if you want to get well, you’ve got to go through these procedures. And I’m just waiting for another one, and I’ll still go. You don’t actually - the second one, maybe she didn’t put enough, numb me, numb me first. The first one was okay. But the second one, she might have hit me in the same spot or a different one, and - but I was okay after that. It’s, it doesn’t hurt.
In some biobanking projects, people are invited to take part in other types of assessments alongside giving a sample, such as MRI scans. People can experience claustrophobia in the MRI scanner, a large tube shaped machine. They are advised to speak to the staff before the MRI if they are worried about claustrophobia. Some people are also troubled by the noise in MRI scanners (which can be like a loud clicking or banging).
Julie felt claustrophobic when she was in the MRI scanner.
Julie felt claustrophobic when she was in the MRI scanner.
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When I’ve taken part in the slightly more involved research projects like MRI scans of the heart, I feel incredibly proud that I’ve done that, because that wasn’t an easy one, and it involved 90 minutes in an MRI scanner and two cannulas, and various breathing exercises, and the claustrophobia which goes with being inside a scanner, and so on. And so yes, I thought, “I’m putting myself out to do this, but I’m very happy to do it.” And somebody’s got to do it; somebody’s got to be a healthy sample in a research project.
Research staff informed people of the possible side effects (bruising, swelling and risk of infection) of the procedures before they were carried out. They stressed to them that they could withdraw at any time if they were uncomfortable. People also said the staff explained what they were doing during the procedure.
The nurses stayed with Chris throughout the procedure and explained what they were doing.
The nurses stayed with Chris throughout the procedure and explained what they were doing.
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They’ve obviously taken lots of samples. Some of it can be a bit uncomfortable. I’ve had various biopsies that they’ve taken from the stomach, and they always warn you that you may get a bruise. You always get a bruise [laughter]. It’s usually quite a large bruise. But it’s actually quite difficult, but they are so helpful, the nurses in particular, they stay with you the whole time, they explain exactly what they’re doing, and every sort of, I would more than likely think every ten or fifteen minutes, if they’re going to do something different, they’ll make sure you’re happy with what they’re doing at that time.
You can stop at any point in any of the studies that they’re doing, but I do have an attitude of if I’m going to do it, it might be a bit, you know, uncomfortable but you may as well see the whole thing right the way through.
Staff tried to minimise people’s discomfort during the procedures. They also advised people how to counteract side effects by pressing on the area to stop bleeding and minimise bruising, or by lying still for a while. One man explained how he was injected with an anaesthetic to numb the area before fat biopsies were taken.
Gareth said the biopsy was not painful because the area was anaesthetised before the procedure,...
Gareth said the biopsy was not painful because the area was anaesthetised before the procedure,...
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Then they got to my stomach and they had worried that my blood vessels weren’t quite big enough in my stomach. And they poked and prodded around. I think they had about five goes at it to insert the cannula. And they showed me what they were doing, and that was kind of an interesting thing, just sticking the large bore needle in, then feeding the tube through with a wire and then pulling it back out and connecting it.
And despite the fact they were saying, they were using infant sizes, they still couldn’t persuade my veins to accept it. It wasn’t too bad because they were giving lidocaine injections just to numb the areas. So having failed to get the cannula into my stomach vein or stomach artery, I can’t remember which bit it was, they had to drop one part of the test. So we switched the test to just, it was sort of a, [pause] it was a blood flow measurement.
And so that was interesting, although it meant I couldn’t hold a book, because I had one hand in a box. But that aside, it was all perfectly comfortable. They, I had a little electric blanket to keep me warm and it was quiet. A bit of Radio 4 to listen to or whatever. I think I switched to Radio 3 eventually, because Radio 4 can be too much after the first half hour [laughs]. And then, that was that side of it. And that was relatively pain free. Every time they stuck a needle into me they put a smaller one in with lidocaine in so it was locally numbed.
And then at the end of it they just said they wanted to take some biopsies. And they were the slightly more painful elements, in that it’s a much bigger needle, despite the lidocaine. And I’ve got a photo of the bruise, if you want to see it. [laughs] I took a picture of it afterwards. But it did bruise quite - they take one out of your stomach and one out of your thigh. The thigh was fine, and I think it’s just to do with the muscle mass. And they, what they were doing was extracting a very small amount of fat, in order to analyse it.
And, as I say, I’m not a medic or biologist. My dad was a pathologist, but I was never too bothered about that. I grew up hanging round hospital but I was never tempted to it. So my medical understanding is what you get from reading the Guardian, or the BBC website, or things like that, on an infrequent basis. But, so the, the details of that I’m not entirely sure. But they were very good about doing that. They did warn that the biopsy would be painful and would bruise, and could bruise quite nastily and possibly – I think they always have to tell you what, not necessarily is the worst case but, you know, what sort of maybe 80 per cent of the population might undergo. And they said sort of, you know, bruising for, you know, up to six to eight weeks. But in the end it wasn’t. It was slightly tender for about a week, and then after that it was just pretty to look at and just showed that I’d - I could show my kids and say, “Look, I’m poorly. Take pity on me.” [laughs] And that was it. And they sort of, that was it, got me up, gave me some food at last, so I could have a breakfast, bowl of cereal, bit of a mix of breakfast and lunch, some toast, cup of tea, and sent me on my way.
People also prepared themselves for side effects. One man said he always read a great deal to make sure he was fully informed before agreeing to any studies.
Colin always reads a lot about any research studies before he took part. He feels he is less...
Colin always reads a lot about any research studies before he took part. He feels he is less...
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That’s actually maybe quite a good moment to ask you about your reasons for taking part in research, because you’ve been in quite a lot of studies. What, what’s mainly driving it for you?
Well, there has to be a huge element of personal reason for doing it. But it’s, it’s not without risk. I consider myself to be fortunate in my level of education, and my access to quality literature, and the willingness to do my own reading. So generally speaking I haven’t gone into any of these studies blind. And this is reading outside of the, outside of the material that’s given to you as part of the trial. I do have a secondary side because I had a change in career five years ago now, well, there or abouts, in that I’ve gone from a relatively well-paid job to a still quite well-paid job, but now working for - I can’t think of a good way of expressing this.
So it’s more philanthropic, what I do now, in terms of it’s no longer monetarily driven. So I’ve always had that element to me. And I am very pleased where I can do something that is of use, because I’ve enjoyed doing research when I did my degrees and it’s, it’s, I know, I know the value of having it. Because you can’t make progression without doing the nuts and bolts behind it. So that’s probably my two - but yes, certainly early on my drive was, was to, was looking at cures. Now, I was younger then and probably more willing to take a higher risk, and I probably didn’t do as much research in the first days of interferon. But that’s the way things change as the years have gone by. I would now take - actually I’ve probably passed the cusp now of where I’d be willing to take a risk again, because I’m getting older. So, you know, it’s past the stage of where anything long term is going to have to be...
Yes, yes, and your children are older?
My children are older now, and things are, bills are paid pretty much.
In addition to donating samples, people may be invited to provide other information by answering questions about their family history and lifestyle.
Ruth was approached at work to take part in a biobanking project. She had to give a brief family...
Ruth was approached at work to take part in a biobanking project. She had to give a brief family...
Sex: Female
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I gave blood for a diabetes research project, but it was a long time ago and I really can’t remember any details. And then because I work in the health, the health field, education, health education, I’ve been approached by a colleague at work, and happened to be approached while I was making a cup of tea in the kitchen, you know, and she said, “Oh, we’re trying to get people to give some blood for a study that we’re doing”. And I said, “Sure, no problem.” So again, [chuckles] had an information sheet, read it, got, took a load of blood from, and I think that was being used to - it was, it was a genetics research project, so they were checking for a lot of things. I think it was sort of genealogies and genetics for genealogy, so working out what genes follow down certain lines and various things like that.
So did that involve giving some family history, answering questions about your family?
Very brief family history. I think it had where I was born, where my - actually I think I did – yes, I think I had to put down where my dad and where my mum was born. But that was it. It wasn’t very much.
No, so they didn’t want to know about prior history of …
No.
.. heart disease and…
No.
.. all that sort of thing?
No.
No?
None of that.
OK.
And I think to a certain extent I think they were sort of almost using a lot of them as sort of blind trials, so to see what the blood itself showed up. But again it was just one of those things. It wasn’t, it wasn’t going to take any time out of my day You know, I think I was actually having blood drawn and I was on the telephone at the same time, so [laughs] I really, it really wasn’t a big deal. And because it wasn’t a big deal I really can’t remember much about it. And it wasn’t one of those things I’d thought about, whereas I’d actually thought about the stem, donating stem cells….
Yeah.
… before and it was something I believed in and I thought was a very good idea.
In some cases (for example answering lifestyle questions as part of the UK Biobank) they were asked to base their answers on the last seven days, which could be difficult if the last week may not have been typical for them.
Gill tried to answer the UK Biobank questions as honestly as possible, but found it difficult to...
Gill tried to answer the UK Biobank questions as honestly as possible, but found it difficult to...
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And then I think it probably took about 45 minutes to go through all the various questions. And there were some reaction tests where they were testing how quickly you could react to things. And memory tests, I remember. Yes, and a whole lot of questions which are all about lifestyle, history, I suppose, of disease in your family and that sort of thing, a whole lot of stuff, which was fine. I don’t think I fudged anything. I think I was fairly truthful. Although it’s quite hard when they say, “How much of so-and-so have you done in the last week?” You think, “Well, was this a typical week? And will this really give them what they want?” And so I think you, it’s probably best just to answer as quickly and as truthfully as you can. But often you just think, “Well, well, it depends.” [laughs] It’s the sort of thing where you want to give more information. But anyway I, yes, did that.
The questionnaire stuff, the computer screens, I mean that, I think that’s very interesting about sort of worries about whether you’re, whether you’re able to give them the right information and whether it’s accurate enough.
Yes, yes, yes.
Because all the stuff about exercise too, and drinking --
Oh, well, quite, yes, absolutely, yes, yes, I agree. And how do you actually portray what is your normal amount? You might have had a week when you’ve done nothing, or you might have had a week when you’ve done a lot. And it’s difficult to quantify. And I don’t know whether actually over such a large group of people it sort of evens out and you get a, you do get a true picture. I don’t, I don’t know. And how many people are truthful about what they drink and smoke and that sort of thing? [Laughs] Maybe they’re not. I don’t know.
Some were positive about these questions as they helped them to reflect on their lifestyle and change their behaviour, but others thought they were quite personal.
Being asked to estimate how much she exercised in the previous week made Julie reflect on her...
Being asked to estimate how much she exercised in the previous week made Julie reflect on her...
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So I was invited by letter to participate in the UK Biobank. It’s the kind of thing that I agree to take part in, as long as it’s not too invasive, because we were trying for a baby at the time. I don’t think I’d ever take part in a drug trial, unless it was something that I already knew I was suffering from. Just out of interest - what was this study, what was it for, who else was participating, feeling, feeling a little bit proud to have been invited to participate, although now I understand that that’s random, and it’s led to some interesting conversations with friends who have always, who have also participated.
What kind of conversations?
One of the interesting ones was about sexual history and how many sexual partners you’ve had. And I’m not saying any more on that one [laughter].
[Laughter] Yeah. There are some quite personal questions—
Yes.
-- in the UK Biobank aren’t there?
Yes.
Yeah. Were there others that you found - I won’t say difficult - but challenging, maybe?
Yes, it was challenging to answer questions about how much exercise I did every week, and I tried to answer honestly, and I felt guilty at the same time, thinking, “This is pathetic. I really need to do more than that.” So participating also raised my awareness.
Well, the drinking wasn’t a problem for me, but I have changed my exercise behaviour since then, and it was one of the things that contributed into making me think about how much I exercised.
In one of the studies she took part in, Chris had to keep a diary listing all the food she ate....
In one of the studies she took part in, Chris had to keep a diary listing all the food she ate....
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But so doing the food, but going back to the food diaries, it’s as interesting for me to write down what I eat as I think it is for the people that are studying it. Because every sweet you eat you write down as well, so like one boiled cough candy, [laughter] and it’s amazing. When I looked through it I thought, “Goodness.” Whilst I eat, [pause] I seem to graze all day, I more than likely don’t eat huge volumes of anything. And again I found that really interesting. It’s a bit of a pain measuring stuff, but again, a bit like when you’re on a diet many years ago, you actually get to know what something weighs, so like, you know, I know just by putting a little spot of milk in my tea that’s less than a teaspoon, you know. So, and it’s measuring those sort of things. It was interesting. And I have been thanked, specifically thanked for doing such a good food diary, which was nice because, you know, it does take a bit of time.
Did it surprise you when you looked at it?
Yes, yes it did. The main surprise, though, I think was – well, they say, “Don’t change anything you do.” However, I think human nature makes you. I can, at work we have lots of cakes and lots of sweets. It’s always cakes and sweets in offices, isn’t there? And if I have a cake, you know, if there’s cakes there because of a birthday I will have a piece of cake, but if there’s sweets in the office, I mean, you just sit and pick them up as you want them. When I was doing the food diary, I actually was sat there one day and I can remember doing it, thinking, “Oh, I’ll have one of those sweets.” And I thought, “No, don’t”, and I thought I can’t be bothered to write it down, so it almost makes you think, maybe as a training programme for other people who are obese, say to people, “Write down everything you eat”, because it makes you conscious of what you’re doing.
Claire felt that some of the questions for the UK Biobank were very personal. She was confident...
Claire felt that some of the questions for the UK Biobank were very personal. She was confident...
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So I whipped in and went straight upstairs and instantly introduced myself, and I was amazed actually, because it was a big open hall and, but terribly quiet and organised with loads and loads of people around, and enough people instantly to be able to greet you, so there was no waiting at all. They made, they were really nice people all the way through this whole experience, the people were lovely, and they said, they explained what you needed to do. They explained that it would be, you would have to fill some forms in, and then you go and sit down, and then you have to, they show you on a mock-up one, that you’ve got a button that you press, and that you’ve got an interactive screen in front of you. And then at one particular point there’s some headphones you take off and put on, and they said that lots and lots of people would be doing this and indeed, you can see them all the way down the thing, all sitting in a row. And so then they said, “Are you ready to get started?” And they give you some practice ones. And so then I got going.
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.
It didn’t matter what I said as long as I was honest, when it’s so easy on questions about your sexual health or your immunisation or all those sorts of things to think, “Oh God, I don’t want to say this.” But all the way through it they let you have bits where you say, “I’d rather not answer these questions.” So it’s fine, I think, to take part.
Yes, it’s very tempting to exaggerate where you know it’s good to do it and underplay it when it’s good not to, like the alcohol. But I just thought, “What’s the point of doing research and not being honest?” And, and, as I say, you have to you have to think unless we give honest answers here it’s not going to help the research. And when it comes to things like your blood test, then you can’t fake that, so why fake the other parts of it, which you could do. So I was actually completely honest, and although I - I had a phase in my life when I was very active, I’m not now. So it would have been nice to have been asked, “Has your exercise pattern changed over the last x years? And are you doing more now or less now?” But it didn’t. So it isn’t an exercise, it isn’t - you have to take it on the spirit that it, no one’s testing you. This is about your lifestyle that, and therefore it’s important that you give a reasonable answer to, that represents your lifestyle.
This issue of trust in the confidentiality, how far do you think that’s because you work where you do that you feel more trust in how the data will be used?
I suppose it is, but you wouldn’t turn up if you didn’t trust that it would be used in the right way. Those people that don’t believe in it would be not the people that would participate. So to get them through the front door, you’ve got to have people - mind you, I didn’t know it would be asking the level of detail it did until I did get in the door. So - but then, as I said,
Other measurements were also taken, including height and weight.
Julie felt her privacy was respected when she was being measured and weighed at the UK Biobank.
Julie felt her privacy was respected when she was being measured and weighed at the UK Biobank.
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Did you worry about whether anybody might be passing behind you and looking over your shoulder?
A little bit, but because I can work quickly on computers it wasn’t a problem, and when it - if I remember rightly, I gave a blood test and I was weighed and my height was measured, and that was sufficiently private not to feel embarrassed. Slightly bizarrely, the office suite where it took place was on the first floor of a large local shopping centre, which surprised me, but why not?
The UK Biobank has an information page explaining the different assessments people are asked to complete.
People usually had to use a computer to answer questions about lifestyle and family history. These included questions they thought were quite personal and private. However, they said they were able to see what other people had on their computer screens and so felt that there was not enough privacy.
Gill recognised quite a few people she knew when she attended the UK Biobank. She wondered if...
Gill recognised quite a few people she knew when she attended the UK Biobank. She wondered if...
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The one thing that I think I wasn’t altogether sure about with this is that I presume they contact people by postcode area or something of that sort. Because, you know, you turn up for these things and half my neighbours were there [laughs]. Now in itself that, it’s not really a problem. It was just rather strange to be in a room and think, “Oh, yes, I know that woman. I know her, I know her.” And my next-door neighbours I met actually in the entrance. So, yes, I thought about that afterwards and I thought, “Hm.” I don’t think I had a problem with it, but it was, “Hm, I’m not sure.”
Yes, because the way the, the Biobank centres are organised, there isn’t that much privacy actually, is there?
No, no.
Apart from one or two bits when you go into a cubicle.
Well, the way it was done for us, the computer bit, the first bit where you go in and do the questionnaire, was just a big room full of computers. So when you’re walking through to yours you can certainly see what other people are doing. So it wasn’t that private. And some of the questions are very sensitive in what they’re asking you about, sexual history and that kind of thing. So, yeah, it wasn’t necessarily particularly private. Yes, I mean I don’t know whether they’re all set up in that kind of way, but...
Well, certainly the one I went to, the, the computer room was as you say, it was just desks all round the room.
Yes, yes. They’ve got sides.
Yeah.
But I mean when you’re walking through you can see exactly what’s on everybody’s screen.
Yeah, yeah. Yes, I mean the, I think the bits when you had your weight and your bloods and things, they were done in separate little rooms.
Yes, they were, yes, yes.
People were also invited to undergo other types of tests. These can include: blood pressure measurements, activity measurements, hearing and eye tests, assessments of reactions and reflexes, tests of mental agility and keeping a diary.
As part of one study, Tony and his partner had to wear activity monitors. He felt the monitor...
As part of one study, Tony and his partner had to wear activity monitors. He felt the monitor...
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So just remind me what the individual feedback components were that you were given. There was body fat?
There was blood pressure, I think there’s a blood sugar level – oh, cholesterol level. I’m running out now [laughs].
And did they do a sort of like a heart, did they do some heart tests or what did they?
They did do, yes. Work, it was a work measurement thing. It was on, I think it was on the hand. We put a wrist thing on, I seem to remember, and it measured the amount of work you did over the 24 hour period, I think it was, yeah. And it was sort of interesting, but it was – although there were some problems about what it actually measured because if you did certain types of exercise it registered pretty well. Louise runs, whereas I did cycling, and it, because of the nature of the exercise - it’s fluid and smooth - it doesn’t register anything’s going on, hardly. But I mean [pause] - I mean, yes, so it basic measurement of how much work you did in a day, and it gave feedback about how much, about what was the essential amount to do in a given day, or what was considered not enough and what was a lot.
Roland has been taking part in research about Motor Neurone Disease for several years. An eye...
Roland has been taking part in research about Motor Neurone Disease for several years. An eye...
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Tell me what’s involved in taking part in that study. What do you have to do? How often do you go and what happens at each visit?
The [Motor Neurone Disease] study is, as I said, five years in duration. I have to go every six months, and interestingly enough the tests that one has to undertake have changed slightly in that 18 months that I’ve been going so far. There’s an eye test that has been added, which is quite fun actually, because it involves following a ball or following things on a screen with your eyes. And it can be quite tricky, some of the questions that are asked. Other aspects of the study is to take a 50 minute MRI scan, and I’ve had several, I’ve taken several of those in the past, and it’s not a pleasant experience but it’s always interesting. Recently I’ve had to have help getting me onto the MRI scanner, but that is something that the staff there will do for you so if – well, in my case I can’t move my legs or my arms, basically - but I can still get onto the scanner so that’s not a problem. There’s a blood test that’s taken as well, which again doesn’t bother me.
Part of a study Elaine participated in involved keeping a food diary.
Part of a study Elaine participated in involved keeping a food diary.
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They always check your height and weight. And they usually take a blood sample, but apart from that.
So they don’t ask you about your lifestyle and smoking and all that sort of thing?
Yeah, oh yeah, oh actually yes, you do. You’re absolutely right, yes, obviously you fill in a form to sort of say whether you’re a smoker or not, how much alcohol you take. I don’t know if they do it every time. I suppose it depends what they’re doing but I have filled that in.
And there have been, there was one study where I had to do a food diary, for so long before. I’d forgotten about that. And I think it was sort of analysed by one of the nutritionists. I suppose it would be just to, you know, if you’re fasting and they’ll want to know what you normally have. But that was, I mean, when they had it written down it looked, I thought, “Oh my goodness, how am I going to remember to write all that you have down?” Because they were asking, you know, for quite specific sort of measurements and stuff, but actually they didn’t need it just quite so detailed as it was. Because if you have to start weighing out, you know, how much pasta you’re having, you know. But it did, as long as it was, you got a rough idea of the portion. So there was, I did do that one time.
So they told you that—
In advance.
--in advance, right.
I think I actually did, you had to do it over so many days, and I don’t think it had to be consecutive days, but you had to write down which days it was and maybe do it over a week, so maybe pick three or four days out of that week. And then I did, I think sent it off to them and they obviously give you a prepaid envelope and you send it off to them in advance, so that they can have a look at it.
The UK Biobank took place in various locations that were not necessarily health centres or hospitals. For example, Julie was surprised her appointment took place in a local shopping centre. Most people thought the locations for biobanking projects were convenient and that actually taking part was efficient and did not take very long. However, Clare was surprised at the length of time the appointment took (usually 2-3 hours).
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...
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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.
For those who had to travel some distance to attend appointments, their travel costs were reimbursed. In some biobanking projects people were even driven to and from the appointment in a taxi, which was helpful if it was an early start.
There was a taxi organised to take Chris to her hospital appointment, which was quite early in...
There was a taxi organised to take Chris to her hospital appointment, which was quite early in...
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The only downside was I had to be at the hospital for half past six in the morning, so it was a bit early, but they provide taxis. So a taxi comes here, collects me, and then they give you, if it’s like a half day - for the scan that was only like an hour or two in the morning, and then I went to work [coughs] - but when I’ve done the other, the rest of the studies, a taxi usually picks you up about seven in the morning and then it usually finishes about half past two, three o’clock. They give you lunch.
Some people were prepared to take time off to attend biobanking appointments, but others said they could only do it if evening or weekend appointments were offered. For example, the UK Biobank offers Saturday appointments, and weekday evening appointments till 7pm.
Last reviewed February 2016.
Last reviewed February 2016.
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