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Biobanking

Being invited or volunteering to donate

Biobanking relies on the participation of healthy volunteers as well as people who have a particular condition. Taking part often involves giving samples of blood, urine, saliva or tissue. These samples are then stored and used to create a better understanding of health and illness, sometimes by tracking the participants’ medical records over long periods of time. One woman said she initially became involved in biobanking “between ten and fourteen years ago”.
 
We asked people how they came to be involved. The most common way people found out about biobank projects was by getting a letter in the post inviting them to take part, sometimes sent by their own GP and sometimes by the project staff.
 

Elaine was invited by letter to give a blood sample for research between 10 and 14 years ago. She...

Elaine was invited by letter to give a blood sample for research between 10 and 14 years ago. She...

Age at interview: 49
Sex: Female
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Well, I was contacted by letter. I don’t know why. I suppose, I think they got my name from the GP surgery and just asked me to go along for a blood test and height and weight, and that was all. And I thought, “Well, there’s nothing much to that, so I’ll just do it.” And then it stemmed from there.

 
And so when, how long ago was that?
 
Well, I’m not sure but I think it must have been about somewhere between ten and fourteen years ago.
 
Right.
 
Yeah.
 
And have you been going all the time since then?
 
Yes.
 
Or have there been gaps?
 
Oh, there’s been gaps, you know. I mean, some years you don’t hear from them, and then at other times you could hear from them twice a year or, you know.
 
And then sometimes when you get a letter asking you to go along to do something it could be quite a few months, because by the time you sort of liaise with them and then you get mutual dates, and then you quite often go up for a like a pre sort of screening, you know? So you go up and they’ll go through everything with you that they’re going to do, maybe do height and weight again, and blood pressure, take a sample of blood, and then you go in again for the actual proper screening, so that in itself could take quite a few months in between.
 
And when you first said yes, can you remember what they were looking for in that study?
 
Not really. I’m sure even at the beginning it was something to do with diabetes, but I’m not a hundred per cent certain, because it was just so long ago. But obviously everything since then has been due, has been with the diabetics, you know, to do with diabetes.
 

Jennifer got an invitation for the UK Biobank through the post. She wonders if the fact that...

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Jennifer got an invitation for the UK Biobank through the post. She wonders if the fact that...

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. But I did wonder whether the population that responded was a bit self-selecting , you know, because presumably it went out, the invitations went out to everybody, and it was up to you whether you did it, yes.
Generally, the people invited by post reported that the information they received was detailed and explained thoroughly what would be involved, although some wanted further information, whilst others did not feel they needed to read it in detail. (See also ‘Information and question about biobanking’).
 

The information Gareth received for several studies gave a detailed explanation of what would be...

The information Gareth received for several studies gave a detailed explanation of what would be...

Age at interview: 49
Sex: Male
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I mean, I felt the information they gave me was really quite detailed. It was - and certainly for the insulin one which I declined it was detailed enough for me to think, “I don’t really want to do that.” For the adrenaline one there was enough, there was lots of information. And some elements of it I thought, “Well, that’s interesting, I...” And some elements I thought, “Well, I’m not entirely certain on that.” There was plenty of information but I’m, I didn’t feel qualified enough to understand it. It talked about medical, you know, they were all medical procedures. And I can’t remember whether they actually gave a percentage risk for any of them. But the implication was that, you know, it’s invasive and there are risks associated with all of these. So I read through it and thought, read through it a couple of times and thought, “Well, I’m interested enough to do it. And it sounds - it doesn’t sound dangerous otherwise they wouldn’t be putting it out.”
 
So I, the information they gave me was sufficient to, for somebody to make a decision. I didn’t feel it was enough for me to make the decision on my own. So I’m not sure what my GP would have thought if I’d gone to them and asked them to read through it. But I, you know, I was fortunate in having somebody in the family who I felt I could ask and would give me a reasonably honest opinion.
 

Claire was delighted when she received her invitation to be part of the UK Biobank, and didn’t...

Claire was delighted when she received her invitation to be part of the UK Biobank, and didn’t...

Age at interview: 52
Sex: Female
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A letter arrived in the post and it said that there was a national piece of research going on and it was all about the biobank. And because I work in a large teaching [hospital] organisation in the NHS, I know [something] about research and I’d learnt about the biobank.
 
It’s one of the aims of academic health science centres to understand more about the population and the impact of [activities and interventions] on [patients and] the population. So I’m, I’m very interested in this topic, so I was delighted to be invited. So I didn’t really read any of the enclosures. I just did, carried on doing what I was doing, but I did ring up and make an appointment, and as it got nearer the date, I couldn’t make that date and so I rang up again. They were absolutely fine about me changing the date, so it was very, very easy to make the appointment. And I noticed, obviously, that is was in [local town] so I knew when I needed to get there. 
People were not always sure why they had been invited. Some thought it might have been because they were blood donors and others thought it could be something to do with the GP practice they attended. 
 

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.
In fact the UK Biobank, a national study of half a million participants, invites people directly by letter, having obtained permission and contact details from the NHS to invite people in specific areas and age groups. Other biobanks may use a similar approach at local level to get in touch with people. Researchers will not pass on your contact details to other research projects unless you have given permission. Biobanks may ask you if any of your family members are willing to take part too.
 
Some of those who volunteered said they saw posters advertising biobanking projects at hospital. Others said they looked for studies they could participate in and asked hospital staff to inform them of any. 
 

Whilst attending a hospital appointment, Ruth saw a poster advertising a research study. She then...

Whilst attending a hospital appointment, Ruth saw a poster advertising a research study. She then...

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I was going for my 18 week fetal anomaly scan and while I was booking in at the hospital there was a sign on the side of the booking-in desk which was basically requesting people to donate their stem cells. So I had a look at the leaflet on the wall, and asked for a, a patient information sheet and took that home. And that was the end of it for till I had my next antenatal visit with my midwife, at which I discussed the fact that I’d seen this, read the information sheet and thought that I’d like to do it. And she put that in my notes. And so it went down on my notes and I completely forgot about it. 
 

At a routine appointment at the high risk pregnancy unit, Julie asked if there were any research...

At a routine appointment at the high risk pregnancy unit, Julie asked if there were any research...

Age at interview: 45
Sex: Female
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When I became pregnant I had to go to a regular clinic, a regular antenatal clinic, for high risk pregnancies, and so I actually asked them if there were any research projects I could volunteer for. I have done this kind of thing before. I’ve been a blood donor since I was 18 years old. I carry a donor card as well, and my husband and I have together participated in a few research projects such as MRI scans of the heart, which was quite hard work, but fun and satisfying. So I was, I was already aware of the value of different kinds of medical research, and because it had taken me so much help to get pregnant, if I could possibly put back into the system I wanted to.
Some people told us they found out by word of mouth, especially if they or someone they knew worked in research. For instance, Tony, whose partner works as a nurse, found out about the study from her. 
 

Tony explains how he became involved in biobanking because of his partner.

Tony explains how he became involved in biobanking because of his partner.

Age at interview: 33
Sex: Male
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I heard about it from Louise because she’s a med-, a research nurse at the hospital. And we’re both endurance, we’re into endurance sports. Louise runs and I cycle, and what goes along with that is often a concern about heart rate and blood pressure and all these sort of things, slightly unhealthy perhaps, occasionally. But anyway, we’ve got a concern about these things. And it seemed, it seemed to be both a useful and interesting thing to do, to get a medical check to see where we are in, by all these medical measures. That was certainly one, one aspect of it. And also I suppose a general belief in that, helping out the research world, medical research world, in that, with the idea it may contribute in however small a way to the general good, I suppose. Those are the main motivations, I would say.
 
So how had Louise heard about the project?
 
To be honest I’m not quite sure. I mean she comes across these sorts of things at work often. We often discuss some of the, you know, research that she’s undertaking and that’s all I can say, really. I’m not entirely sure the exact process by which we became aware of it.
 

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...

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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 addition to healthy volunteers, people with long-term and life-threatening illnesses are important participants in biobanking. The people we spoke to in this group explained that they had either volunteered or been invited to take part because of their condition. Sometimes other family members were also invited. 
 

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.
 
 

Colin discusses a study he was invited to take part in because he has Hepatitis C. He is always...

Colin discusses a study he was invited to take part in because he has Hepatitis C. He is always...

Age at interview: 49
Sex: Male
Age at diagnosis: 17
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Tell me a bit more about this particular study that you’ve been involved in, the latest one and the giving samples. What has that involved?
 
No, very - well, very little. I’m surprised I haven’t had more, more back from them. It was a, quite a detailed questionnaire at the time. As I say about eight or ten tubes of, phials of blood. She sent me a questionnaire in the post, which I duly returned. And that was about it. I sort of expected more, more from this, but no, nothing else has come out of it, this one.
 
What was the questionnaire about?
 
Yes, I thought you were going to ask me that. I’ve become quite blasé, and I’m very happy to give my time and bits of me for research, to a point of where as long as I see the correct ethical clearance on the forms and the other bits and pieces, I’ll do them and sign them and carry on, because, you know, I’ve read them and seen them before and done it before. And I have to admit I didn’t pay a huge amount of attention as to what she was aiming to do out of it.
 
Right.
 
I think she was genotyping actually. Yes, I think she was genotyping.
 
So were they looking, were, did it include sort of lifestyle and family history kind of questions?
 
I think there were some in there, yes, there were certainly. There was the usual one for the liver, of course, which is, “Do you drink?” and all of that kind of stuff, which always comes up. But that question only stands out because it’s so, such a standard question on a, on anything to do with the liver.
 

Jean has a rare condition, Motor Neurone Disease. She volunteered to participate in biobanking...

Jean has a rare condition, Motor Neurone Disease. She volunteered to participate in biobanking...

Age at interview: 56
Sex: Female
Age at diagnosis: 50
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I think then I probably settled back into thinking that, “Well, I’m not going to be able to take part in any trials” because, again, of my, the rarity of my disease. And so it was a little while after that that I learnt about the [Motor Neurone Disease] study in Oxford which was going to be starting in the near future. And it seemed to encompass anybody with MND, and so I thought that this was another opportunity to actually be a little bit proactive about my disease. It had taken a very long time to diagnose, the same as many, many other people who walk down the same path, and the lack of biomarkers and a specific test for MND is one of the major problems. And I’d felt for quite a while that that was quite an important issue for not just myself, but for everybody who has the condition. And so I thought I ought to put my money where my mouth is and volunteer. I did get the information and I read what it involved, and I thought, “Well, I can do that.” I don’t have a worry about things like MRI scans or blood samples, I don’t even have a particular concern about lumbar punctures. I’d, in my career as an anaesthetist, I had performed similar things thousands of times, and it didn’t hold any concerns to me at all. 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.
 

A few weeks after a diagnosis of Motor Neurone Disease, Ian’s care team asked if he’d consider...

A few weeks after a diagnosis of Motor Neurone Disease, Ian’s care team asked if he’d consider...

Age at interview: 54
Sex: Male
Age at diagnosis: 51
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After that, a member of their team did contact me about - I think I gave them the feeling that I was willing to talk about my, my issues, I was willing to share my experience. And they gave us a bit of space while, obviously, we took it all in and broke all our news and did everything we wanted to. But probably about four or five weeks after I’d been there, they made contact and said, “How would you feel if we spoke to you about doing certain things?” And then they sent a lot of information in the post to us to read. They gave us websites to look at, but it was never pushy. It was always down to us to, to get back to them. There were some questionnaires that came through from some other areas, people that we hadn’t dealt with directly. I think there’s a research group in Liverpool that were quite keen to get some data from me. We did participate with that to start off with, but we dropped that fairly quickly because we felt the team that we’d got involved in in[city] , if we had time, then it was their time. It wasn’t time for other people. 
It is important to remember that even if you are invited to take part in biobanking, you have a choice whether to say yes. Some people who were invited decided not to take part. (Please see ‘Deciding not to take part in biobanking’).

Last reviewed February 2016.
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