Biobanking
Deciding not to take part
A few people we talked to had chosen not to take part in biobanking. They gave a variety of reasons for their decision. These included: inconvenient timing; concerns about privacy of their information; and worries about any discomfort during invasive procedures. Others questioned the purpose of the project or felt that in large studies of the population they would not be missed.
Elaine and Richard both decided not to respond to an invitation to join the UK Biobank, for different reasons.
Elaine decided not to donate to the UK Biobank because it was a bit inconvenient at the time and she was already committed to research about diabetes.
Elaine decided not to donate to the UK Biobank because it was a bit inconvenient at the time and she was already committed to research about diabetes.
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Have you taken part in other kinds of medical research?
No, no, because it’s always been, you know, the diabetic centre that’s always contacted me from the hospital. And I’ve just stayed with them. But no, I don’t think I have had - although apart from maybe that biobanking, when that came through a couple of years ago. I think that was slightly different.
Tell me a bit more about the biobanking?
Well, I just, again, a letter came through but it had a fixed appointment on it and I think I was, I already had an appointment to go up and do the diabetic studies and it didn’t fit in with what was going on at the time, and so I didn’t take part. But I know that was more of a national thing.
I think you said earlier that you thought you were already doing enough, in a way?
Yeah, well, that’s - I think that’s sort of the wrong, the wrong word, because I would never say, you can never do enough, can you, really? But I think at the time there was enough going on, you know. Maybe if it had come at a different time and it was a day that I, you know, I didn’t have to change the times or - I think the times that they had written down just didn’t fit in with what was going on at that time and therefore I decided just to leave it.
Richard did not want to take part in the UK Biobank because it was not clear how the data would be used. He worried it could be misused and was also concerned about privacy.
Richard did not want to take part in the UK Biobank because it was not clear how the data would be used. He worried it could be misused and was also concerned about privacy.
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My, probably I felt some misgiving about the nature of it, inasmuch as it’s a long-term study, without specific aims that I could identify. So it was to collect a lot of data and personal data, it would have access to my GP record, and collect a massive database on everything for whatever purpose was deemed necessary in the future. And that type of research would concern me.
Why?
I have an innate suspicion of, of the government - not that this is the government - but of databases, of CCTV. Most recently, to give an example, although this is since the research request, a database covering all children throughout the country to try and aid child protection, when most people who know anything about it would say it doesn’t and can’t. And in that instance they collect data from schools. They give parents no right to opt out of that particular database. And there seems to me to be an element of Big Brother collecting data. At the moment it is probably fair to say that the government can’t get its act together to use all the data it’s got as it may wish to, but that in the future may change. If they linked, for instance, a database developed by Biobank with my shopping in Tesco’s with whatever else is on a database, increasingly it all joins up and they can know everything about you.
And what would be your fears about what they might ultimately do with that?
That’s interesting. Because there is an argument to say, “If you haven’t committed a crime, you have nothing to worry about.” I don’t subscribe to that view. I think probably the biggest worry for the individual is a misuse of data - perhaps a misunderstanding, perhaps a mistake. Perhaps you get locked up because they have linked the wrong shop with the wrong Biobank information or whatever. Mistakes happen, data goes missing. It, you know, it may sound paranoid, but it can be misused.
Richard's reasons for not taking part were mainly a matter of principle that the government should not interfere in our lives. His wife took part but he thinks she later wished she hadn't.
Richard's reasons for not taking part were mainly a matter of principle that the government should not interfere in our lives. His wife took part but he thinks she later wished she hadn't.
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So it’s partly practical issues about what might happen and partly principle?
Probably more principle than practical. And certainly I know from working for a large state institution that people’s fears about what can happen vastly exceed the ability of organisations to get their act together and to use data in certain ways. So I think it’s more a sort of liberal principle of not wanting the government to interfere, and, in fact, the fact that they shouldn’t know as much as they seem as if they want to.
Were you and your wife invited at the same time?
Yes.
Did she get an invitation?
Yes.
And did she go?
She did go. Interestingly, some of the views that I’m putting forward are very much shared by my wife. And at a later date she said she probably wished she hadn’t. And that’s an interesting thing about how long you consider something for before you think of the ramifications. She did go. She was somewhat, it was somewhat awkward for her because her appointment was put off to a less convenient time. But she is part of the Biobank scheme.
Gill took part but her husband decided not to and shared some of Richard’s concerns about data security and the development of a ‘surveillance society’.
Although Gill herself took part in the UK Biobank her husband decided not to. He feels the government already holds too much information about us.
Although Gill herself took part in the UK Biobank her husband decided not to. He feels the government already holds too much information about us.
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You talked about whether people might be able to hack into the data or it might get lost. Was it ever an issue for you about kind of government surveillance and Big Brother?
Well, the reason I laugh is because my husband is obsessed with this. So he refused, and I said, “Oh, yes, I will do it.” So we did have quite an interesting family discussion –
Tell me more?
-- about the whole principle.
Well, yes, I don’t want to speak for him, but he, you know, he’s concerned about increasing surveillance society and things like CCTV coverage, and all the information that is being gathered and stored somewhere by somebody and, you know, how easy it might be to, for that to fall into the wrong hands. Who knows? You know, we trust and respect our government, hopefully, but [laughs] you never quite know what’s round the corner. I take a bit more of a pragmatic view because I don’t - I don’t feel as strongly as he does about it. And I have to believe that a lot of this is about public good, and particularly where research is concerned. I mean, you know, perhaps there are differences when you’re talking about identity cards and things of that nature. But in terms of this, this is being set up for I think a very good purpose, a very laudable purpose. And I’m, yes, in the end my decision was, “Can I think of a good reason not to do it?”And actually I couldn’t. And I felt that, you know, having read the information and looked at the kinds of regulatory background to it, I was quite happy with that.
Some studies involve giving a range of different types of sample. We talked to several people involved in a biobank for Motor Neurone Disease. None of them had any concerns about giving blood samples, but two people were worried about giving spinal fluid samples through a lumbar puncture (a needle into the spine). Roland had a negative experience during his first lumbar puncture. Ian had never had one, but had seen them performed on TV programmes and imagined they would cause a lot of discomfort.
Roland decided not to have a lumbar puncture as part of a research study on Motor Neurone Disease as he'd had a previous bad experience. It was not an essential part of the research, so he was able to continue giving blood samples.
Roland decided not to have a lumbar puncture as part of a research study on Motor Neurone Disease as he'd had a previous bad experience. It was not an essential part of the research, so he was able to continue giving blood samples.
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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.
Ian was worried a lumbar puncture to take a spinal fluid sample would hurt. The researchers were more concerned about him being comfortable and respected his decision not to have one.
Ian was worried a lumbar puncture to take a spinal fluid sample would hurt. The researchers were more concerned about him being comfortable and respected his decision not to have one.
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And have you actually had a lumbar puncture in the past?
No.
Right.
No, I’ve played sport and I’ve damaged my back. To a smaller effect, I know how painful working on the back can be. It’s just one of those areas of the body where I’m a bit funny about. So and unfortunately I watch ‘House’ and they’re always doing lumbar punctures on ‘House’ so no, I know what it’s all about and if there if there was a better way of getting into the spinal fluids then I would consider it. But yeah, I mean, I rely on sitting up and being comfortable and I don’t really want the discomfort of that taking place as well.
And the team weren’t at all worried—
Not at all.
--that it would affect the study or?
Absolutely not. The minute I showed any concern about it they dropped it. They made it absolutely clear that we were all there to help one another and if there’s any aspect of the testing that I was uncomfortable with then they wouldn’t even go there. So I don’t mind needles being stuck in me and having blood taken out. I don’t mind anything else. It was just that one area of the body I just didn’t want them to touch.
Several people discussed the types of project in which they would not participate (see also ‘Attitudes to other types of medical research’). Concern about invasive procedures or pain was a common issue. Gareth, who regularly takes part in diabetes studies as a healthy volunteer, decided not to take part in one that would have involved being injected with insulin.
Gareth explains how he said no to a study in which he would be injected with insulin because it was too invasive.
Gareth explains how he said no to a study in which he would be injected with insulin because it was too invasive.
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And then they said that I’d be on a database, and that was pretty much it, and I didn’t hear anything for a year. I think about a year later I had a letter inviting me to a - it was quite a detailed letter - inviting me to a study on the metabolism of insulin. And it’s, it was fairly invasive. It was going to require them taking blood and injecting insulin into me. And I read through it and decided I didn’t particularly want to be, I was healthy and I didn’t want to be injected with drugs that weren’t, that I didn’t particularly need at the time. So I just declined that one and moved on.
Ian, who has MND, chooses not to participate in research that may cause him pain.
Ian, who has MND, chooses not to participate in research that may cause him pain.
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But my other view was that if I could help others I had nothing to lose, so this is how I got involved in offering my services to research. I was fairly particular about it, in that I was happy to do any research, I was happy to give any samples, sit in machines, have MRIs, anything that was required, but the one thing I was against was having to go through any pain barrier, unnecessary pain barrier. So the one thing that I’ve eliminated from any research is things like lumbar puncture, but otherwise here I am and happy to discuss things with people, talk about my experiences, and anything else that medical research wants, I’m there for them.
Most people could see the value of donating samples to biobanks for research, even if they chose not to take part. However, Richard felt unsure of initiatives like the UK Biobank because they do not have “a specific aim”. He contrasted this with another study which he did take part in.
Richard contrasts the UK Biobank with another study which he felt was more directly useful, both for himself and for health care.
Richard contrasts the UK Biobank with another study which he felt was more directly useful, both for himself and for health care.
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Some years ago I was involved in some research that I think it was being done at [specialist hospital]. And one of the things that appealed to me about it was their description of a control group as ‘couch potatoes’, which I was at the time. And the research was to compare physically healthy and very active exercisers, and their psychological well-being, against couch potatoes. And the result was, actually, that there was mentally no difference. So the research didn’t back up [laughs] what it was trying to find. And there are many ways they can measure the degree of couch potato physical build, fat, volume of oxygen absorbed in the lungs etc. So it was semi-invasive in the number of tests one had to go through and an exercise test, and then mental agility tests etc. and well-being tests, to see how fit the different groups were.
So why did you decide to go for that one?
Well, it had a specific aim. Biobank doesn’t. It seemed to me useful to me, inasmuch as they said that I would get the results of my tests back, so whether that was a measure of physical well-being or mental well-being. And looking at the outcome, I think it is inherently useful to know the outcome. It’s interesting to me [laughs] that the outcome of the research didn’t bear out either what the investigators thought it would or common sense tells you.
While some biobanking projects are small and do not involve many participants, others like the UK Biobank can be conducted on a large scale and can involve thousands of participants. Being invited into a large biobank can make people feel they won't be missed if they decide not to take part. As Richard said, “The cost of one individual in what is actually a population study would be minuscule”. Despite declining to take part, most people saw the importance of biobanking for medical research, and said they would not discourage others from participating.
Last reviewed February 2016.
Last updated February 2014.
Last reviewed February 2016.
Last updated February 2014.
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