Biobanking
Reasons for wanting to take part - helping medical science & other people
The reasons people give for taking part in biobanking vary. They may participate in order to help others, to make a contribution to science or medical research, or to gain personal benefits, such as free health checks or reassurance that they are healthy at present. Often, people’s reasons are a combination of these factors. In this section, we will be discussing people’s desire to contribute to medical science and help other people. (Please see also ‘Reasons for taking part' personal benefit’).
Unlike clinical trials, in which new treatments are being tested, in biobanking projects people are usually not being given a treatment which might benefit them directly. Biobanking relies on the contribution of healthy volunteers as well as people who have specific illnesses or health conditions. The people we spoke to who had got involved in biobanking projects recognised the importance of their donations in helping others and contributing to medical research.
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...
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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.
People often said they took part in biobanking because they wanted to contribute to the greater good and to help other patients, even if there was no personal benefit for themselves. This included people who participated as healthy volunteers, such as Gareth above, and those who had a particular condition.
Paul is rewarded by the thought of helping other people and the research staff.
Paul is rewarded by the thought of helping other people and the research staff.
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It sounds like you have a good relationship with the staff in the clinic?
Yes, very much so. I think when they see people are giving, caring, wanting to help, they obviously have a respect for them, and they are able to motivate them. And I just go in and say, “Any more, anything else to volunteer for?” It’s a passion that I have to give as much as I can, as often as I can, to as many as I can, and just keep doing that. And obviously the rewards are immense within oneself, because you realise somewhere, some way along the line, you are helping another person.
And with this particular, the biobanking one where they’re taking the spinal fluid and the bloods and so on, are you, do you know how they’re using the data? What are they doing? What are they hoping to find?
I am told that it’s been of great help. I never ask questions, but I’m sure that if I did I would have a response to those questions, but just knowing that it has been of immense value to them and being told that is very satisfying and consoling to me.
Roland wants to help people even if he will not personally benefit from taking part in research....
Roland wants to help people even if he will not personally benefit from taking part in research....
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I like the idea, I like the feeling of being able to help other people, and if it was, I suppose I’d still be keen to help other people even if I knew it wasn’t going to help myself. I did take part in another research project that was to do with drinking fruit juices, and that seems fairly innocuous and easy to take part in, but I had to drink a particular fruit juice, oh, once or twice a day? Anyway I lasted a couple of days on that project and the fruit juice tasted so foul that I just – I mean, I was given a month’s supply and told to take, you know, two of these every day, and I just said to myself after a couple of days, this is, this is too painful, it’s too much like hard work. And I just sent the box back [laughter] with my apologies and for wasting their time and they were very good about it, and they didn’t like the stuff either, I think.
That’s quite a problem. It’s got to be palatable, hasn’t it, if people are going to comply with the treatment?
Indeed. I have no idea what it was... supposed to achieve. It was some university project. But also, as I’ve said, it’d be silly to say, if a cure could be found for MND in my lifetime, then I’d be foolish not to want to take part in research to help find this cure.
For some, an important factor in deciding whether to take part was thinking about the future health of members of their own families.
Gill hoped both her own family and other people might benefit in future from her donation. The...
Gill hoped both her own family and other people might benefit in future from her donation. The...
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I was just reading something on the train on the way up, actually, where it was talking about biobanking as, as a gift.
Right, yes.
Does that feel right to you?
Yes, I guess so, yes, yes. I hadn’t thought of it in those terms, but, yes, I think it is, because they’re very keen to stress that there is no personal benefit to you at this time. But of course we all think about generations to come and our families, and I would hope that in some way it can contribute to better health and better diagnosis and treatment for family, you know, generations to come.
One of the things that I found interesting in this article was they were talking about how some people felt ‘gift’ was fine as a way of describing it, and other people found that either slightly trivialising or sort of inappropriate in the context of something like tumour tissue.
No, I don’t find that difficult because I suppose I’m perhaps a little more familiar with research. But I mean, you know, the alternative is it gets thrown away. Well, if somebody else can use it. I mean one person, it’s like, you know, you get Christmas gifts you don’t want, so you recycle them through the charity shop or something. That’s the same thing [laughs]. I know that’s perhaps trivialising it. But, you know, if somebody can get use out of it, why not? And I think, you know, that’s what I would wish for.
Ian hopes no member of his family will develop MND in the future, but is happy knowing his...
Ian hopes no member of his family will develop MND in the future, but is happy knowing his...
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Do you have any worries, I know sometimes people are a bit worried about where their data may end up in terms of sort of privacy and security. Has that been an issue for you?
From a medical point of view, no, no. I mean I’m just another human being in this world who - I mean the human body is a very complicated thing isn’t it? I mean for us to live the number of years we do without more breakdowns is quite incredible. So one expects that a certain percentage of the population are going to struggle with illnesses at some stage in their life. And we all know cancer can hit people, and huge funding goes into cancer, etcetera etcetera. But no, I’m, I’ve got a disease which is not so common. I’m more than happy for anyone who’s interested in finding a cure for it getting involved with me. And, you know, my data is not for sale. It’s there to help create some sort of miracle in the future. And it could be that just round the corner there it’s going to be something simple. We just don’t know, do we?
Yeah, but I guess in your case, as often in biobanking studies, you’re not particularly expecting the research to lead to something that will benefit you yourself?
No, if it does, fantastic, but if it’s there for someone in the future that’s very important. And one has to be realistic and, you know, it could be another member of my family that gets hit in the future, and I don’t want them to go through the same situation I’m going through. So if I can benefit them in some way, wonderful.
More generally, they also wanted to help others, saying, “It’s like giving to mankind”. One man said, “You feel that you are contributing to the world, which is a good feeling in itself, and also good could come out of it.”
David believed that it is through research that we make progress, including clinical trials and...
David believed that it is through research that we make progress, including clinical trials and...
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I mean in thinking about it, one hears doctors, researchers making appeals to people’s altruism, you know, “do this for other people for future generations”. Was that part of your thinking?
I think it was, yes, I mean I don’t have anything to lose. If the side effects destroy my longer term health, which is quite possible - I mean because that’s why they’re looking at the way I react to the side effects - it’s not going to be, it’s not going to have a great consequence on my life if it messes up my organs, say ten years down the road, because I won’t be here to worry about it. But for somebody else on a medical trial where they’re looking forward to a long life, I would say it’s very important for them to understand that. But with me I was just looking at it in the short term. And yeah, I mean my father had a, quite a severe heart condition and he took part in several medical trials and was pleased to do it. And I thought the same, you know, I thought, “Well, I don’t really have anything to lose - okay I’m not going to just accept anything they tell me, but on the other hand I’d be happy to help out, particularly if there’s a chance that it might be beneficial to me.”
So for me there’s always an element of research in everything I do and so I, it doesn’t frighten me when I hear people want to use tissue and blood and things like that for research. That’s how we make progress. And it is to the overall benefit of mankind, so good, I’m glad about that. And if I can get some benefit out of it as well, well, there’s a double bonus, yes.
Helping others is Vincent's main reason for contributing to research, even if there is no benefit for him.
Helping others is Vincent's main reason for contributing to research, even if there is no benefit for him.
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I want to help others. It’s as simple as that. I’m just a simple old Buddhist. I’m also an old fart, as I’m told, sometimes. But I’m the oldest person in this lane and recently I haven’t been well, and some of them prayed for me, others have done other things. They all want me to carry on. I want to live to a 100 and be a pain in the arse, I really do. There’s one thing I like about being old is that I speak my mind, you know. I, that’s me.
Because there’s no personal benefit really involved in giving these blood samples?
Well there can’t be. I don’t think any treatment will come along in my lifetime that will make it retrospective, but that doesn’t matter to me. I want to help others, you know, simple as that.
Some people described a sense of duty to the wider community and some took part simply because they had been invited to. One person described it as “doing your bit”, but at the same time talked about a sense of personal satisfaction (see ‘Reasons for taking part - personal benefit’)
Elaine feels that no-one should have to take part in research but that we should all find some...
Elaine feels that no-one should have to take part in research but that we should all find some...
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Do you feel there’s a sort of social responsibility to take part?
A little bit, yes. I mean, I don’t think people should be made to take part in it. You know, I mean there’s - I mean, there are people who just the thought of going up to hospital or the thought of needles or anything to do with that just makes them feel quite squeamish and quite ill. So, you know, I can understand that they wouldn’t want to. But I think if everybody, you know, does a little bit - and it doesn’t have to be, you know, research. You know, it could be, there are lots of people do, you know, charity runs for things. But I just felt that it was something that didn’t bother me, having blood taken from me or a needle put into me, it just doesn’t bother me.
So I felt quite happy to contribute that way. It’s better than running a marathon [laughs].
Jean gets a "sense of satisfaction that I'm doing my bit". She hopes by taking part in biobanking...
Jean gets a "sense of satisfaction that I'm doing my bit". She hopes by taking part in biobanking...
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And so I’m very prepared to do all the bits necessary, and for me it seems that if you’re trying to glean as much information as possible, then if I can provide as much sampling as possible of all the various different tests, then I get a sense of satisfaction that I’m doing my bit. And I know that I’m not doing my bit for me, and I don’t think that is so important. It’s not as if there’s a drug out there just sort of waiting to be tested that’s going to necessarily be of benefit. But what I hope is that people who are following on will be able to gain the benefit from those of us that have participated in research, that they may discover something that is useful as a marker in the future.
And I think that basically sort of sums up why I wanted to do it, and the fact that I have no qualms about providing any particular samples and it held no worries for me at all.
People hoped to contribute to scientific progress and to improve health, diagnosis and treatment for future generations, but sometimes also hoped they might benefit too (see also ‘Reasons for taking part - personal benefit’). Sometimes people seek out projects to take part in because they believe it can make a difference in their lives and in the lives of others. For example, when Roland attends appointments about his Motor Neurone Disease, he “always makes a point of asking if there is any research project going on”.
Some people return to take part in other studies after they have been involved in one. This may be linked to the relationship they develop with the staff, who can be appreciative of their contribution (see also ‘Communication and relationship with staff’). People also said that knowing someone else who had participated in some form of medical research may have influenced their decision to take part.
David felt he would get better care for his skin cancer if he took part in research. His father...
David felt he would get better care for his skin cancer if he took part in research. His father...
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So it’s not so much cynicism. It’s more a quid pro quo, isn’t it? I mean, you scratch my back, I’ll scratch yours. And one of the things I’m very conscious of is that I’m getting better care than if I hadn’t have joined the trials, because I’m being supervised much more closely. For example, I’m pretty sure that I wouldn’t have got any scans at all until I was pretty ill, had I not consented to join the trials. And it certainly wouldn’t have become apparent that I’d had, that the tumours were spreading. That only came to light because of the fact that they wanted me to join the first trial. So, and I noticed the same when my father was very ill, and this would have been 10, 15 years ago, that his care was much, much better than perhaps we could have expected had he not consented to join the various trials.
Some of the people we talked to worked for the NHS or in research jobs (either health-related or other kinds of research) and knew how important it is for volunteers to come forward. Some also expressed a personal interest because of their family history.
Gareth has been familiar with research since childhood, because his dad was a pathologist and ...
Gareth has been familiar with research since childhood, because his dad was a pathologist and ...
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And I suppose it was just my connection with, you know, Dad worked at a hospital, he was a pathologist, and so I used to go down. And it, it was slightly curious. We, he was - we went out to Newfoundland in Canada in the 70s and he was working in a hospital there, a small place called [town] up in the northern peninsula, which is the middle of nowhere. So it was quite a small community with quite a big regional hospital. So, but I used to wander round the hospital. The hospital was the place, so I used to wander in and out the lab fairly regularly and, you know, the blood bank was just along the corridor.
And, you know, certainly when Dad needed some blood he’d phone up Mum and say, “Come down. I need some blood” or things like that. So, you know, I’m familiar with the microtomes and the microscopes and sort of that side of it, which is all, that’s more the research and sort of investigation side, as opposed to the clinical and sort of the patient side. You know, so I’m - my dad was never good with patients and I’ve never been a patient fortunately. You know, about twice I’ve had to be in hospital. So I think it’s just an interest in sort of research and science, and just a bit of knowledge from my youth about sort of the medical side of it, and just curiosity.
And I guess familiarity is quite important, really, isn’t it?
It is, if you’re familiar with, if you’re familiar with people on that side. Most people, when they go into a hospital, will be there as a patient, so they’re in a bed, and they’re just seeing a GP who’s not got, maybe hasn’t got any interpersonal skills [laughs], and they won’t know anything at all about why they’re in there, what’s wrong with them and what’s going to cure them. Whereas I’ve sort of gone in and seen, you know, what happens when they take your blood. You know, they freeze it, or they take a section, they set it in wax, slice it up, put it under a microscope, stain it. I know all that side of it. And, you know, I’ve peered down the microscope and looked at bits and pieces and never been hooked by it. I think my dad hoped I might have been. But, no, I was more interested in the Lego and the Meccano and train sets and the mechanical sides of it.
But Louise also noted that some of her NHS colleagues did not always understand her reasons for taking part.
Some of the people we spoke to explained that their decision to take part in biobanking was to repay the care either they or their family had received. There was a sense of general gratitude to the NHS. People took part as a way of acknowledging the dedication of staff (health professionals and medical researchers) and the care they provided. They used it as a way to say thank you to previous generations of patients who have taken part.
Chris's twin brother is blind, despite having several experimental operations to try to give him...
Chris's twin brother is blind, despite having several experimental operations to try to give him...
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What do you feel you get from it?
The satisfaction. Well, I like to think, I have a brother, a twin brother - maybe one of the reasons I do it - I have a twin brother who’s blind, and he was born blind, and my mum’s attitude, which I guess follows down through generations, was that he would, she let him have any operation that was going, and we’re talking of fifty years ago, so it’s a long time ago and technology’s moved on enormously since then, but she let him have any operation that was going because there might have been a chance that he could see. And he never did see, he still can’t see now, but I think that attitude of, “Well, let’s try it” has passed on to me. And I like to think that maybe I’m helping future generations overcome some of the problems that we all have. One of things that the studies always do tell me is that what they’re looking for is not to help me in my lifetime, because studies take 30, 40 years, you know, to come to fruition, but it’s for, it will help other people. And I think going back over my life people must have done that for my brother to have those operations. And I suppose I came to think of it in terms of, “I’ll do my little bit to help.”
I think that’s the main reason I do it. I just like to think I’m helping somebody. I do blood donoring, since I was in my twenties. I’m frightened, don’t like the sight of blood - I actually hate the sight of blood. And one of the things in the studies, they do many, I’ve had lots and lots of blood tests, and they take lots of blood. It’s not just a little tiny one. They’ve got all these different phials to one side, and you’ve got your arm there, and I have to look away. I can’t look while they’re doing it [laughs]. But they do it, and they take loads. And I think, “Well, as long as I don’t see it.” But actually I think last time I was getting a bit braver, and I’m thinking, “Oh, it’s not that bad,” [laughs]. So yeah, I think the main reason I do it is to, I like to think that maybe somewhere along the lines I’m helping somebody else.
Gill donated to the UK Biobank because she believes she has benefited from other people doing...
Gill donated to the UK Biobank because she believes she has benefited from other people doing...
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The approach was originally through a letter, a written invitation, and that gives you a fair amount of information. And they offer you a provisional appointment. And then you have to confirm whether you’re prepared to do that, or obviously make another appointment if it’s not convenient. And they send you the information leaflet, which I thought was pretty good. I mean, it’s quite detailed but reasonably straightforward to follow. And I think I spent probably a week thinking about it. And as I say, I think it was about, my approach to it was, “Is there anything in here that would make me not do it?” rather than, “Do I want to be involved in this?”
And at the time did you have any issues with the idea of bits of tumour being kept?
No, not really at all. Really my view is if I can provide anything that is useful for the future, then I’m happy to do so. And I’m sure that I benefited from other people doing similar things over the years. So I was happy to do that. It didn’t, and it wasn’t a particularly big decision for me. I was happy to do it.
One woman who became pregnant using egg donation and IVF said she donated to the UK Biobank because she wanted to repay “the system” as she had benefited from others’ participation in research.
Many of the people said that taking part was quite easy to do and did not take a long time. They often thought about it in terms of “why not” do it rather than thinking about why they should do it. We asked people whether they felt it was similar to blood donation, which has often been compared to giving a gift*. Whilst some felt this was a good comparison (see for example Gill above), others felt it was overstating the case, because the types of things they were donating, such as tumours, urine or umbilical cord blood, could not be seen as gifts. They simply felt that their donations would have been waste products otherwise.
Elaine, a healthy volunteer, thinks a gift would have to be "a bigger thing like a kidney",...
Elaine, a healthy volunteer, thinks a gift would have to be "a bigger thing like a kidney",...
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What does gift imply that that isn’t, doesn’t match with this idea, then?
I don’t know. Well, to me giving a gift’s sort of a bigger thing. You know, like giving like a kidney or a - you know. But to me, I mean, going along and doing this - okay, it does take time. I mean, people would need to know that, you know, it can be a whole day. But as I’ve said before, to me there were some benefits [laughs] because, you know, you were relaxing all day, you know. And if you are giving - but I mean to me, giving - I mean you go to your GP and he could say, “Well, I need a blood sample.” But you wouldn’t say you were giving him a gift, would you?
*See for example the 1970 book about blood donation by social researcher Richard Titmuss, The Gift Relationship: From Human Blood to Social Policy.
Last reviewed February 2016.
Last reviewed February 2016.
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