Gill - Interview 01

Age at interview: 55

Brief Outline: When Gill had breast cancer, she gave consent for a tumour sample to be kept for research, and gave an extra blood sample for blood marker assays. She has also taken part in the UK Biobank study.

Background: Gill is a Primary Care Organisations Coordinator and is married with two grown-up children. Ethnic background' White British.

More about me...

When Gill was diagnosed with breast cancer in 2007, she was invited to take part in two studies involving tissue or blood samples. In the first, she was asked for consent for a piece of the tumour to be kept for future research. She was happy to give permission. There was nothing extra involved for her as the tumour was being removed anyway, and she was pleased if something good could come of it for future generations. It was explained to her that the tumour sample could be used in studies run by commercial companies, but she was not worried by this. 

 

She was also asked for an extra blood sample for a study involving blood marker assays, at a time when she was having blood taken anyway. Tumor markers are substances produced by tumour cells or other cells of the body in response to cancer. They can be found in the blood, in the urine, in the tumor tissue, or in other tissues. Understanding more about these markers may help doctors detect cancer earlier in future, which is why researchers are interested in them. Again, Gill was happy to take part, and it involved very little extra on her part. However, she did feel the nurse taking the sample did not know enough about the purpose of the study to explain it properly. If it had been a more invasive test, she might have asked to talk to someone else to find out more before agreeing, but as it was it did not really matter to her.

 

Finally Gill was invited to join the UK Biobank study, a study which aims to collect samples of blood and urine, measurements such as height, weight and blood pressure, and lifestyle details such as exercise, diet, smoking and alcohol from half a million people nationally. By linking this information with future health records scientists hope to make progress in understanding causes and risk factors for many types of disease. Gill feels this is a really worthwhile project to take part in – for her it seems like a community duty to help with medical research if you can. She had a 90-minute appointment at a local centre where she did a computer survey and had various measurements taken, as well as giving blood and urine samples. The only thing she was concerned about was the lack of privacy during the computer survey, but otherwise it was an interesting experience. She was pleased to get a print-out of some of her personal results, which showed she had high blood pressure. She went to see her GP, who is now monitoring it. 

 

Gill feels there is good regulation of tissue banking and that she can trust her samples will be securely and respectfully looked after. She knows some people are worried about what they see as too much government surveillance and the risk that somehow their data may be misused, but she feels confident it will be used appropriately. She might consider leaving her brain for future scientific research, but would probably not be willing to leave her body for medical students to learn anatomy, mainly because she would be unsure about how respectfully it would be treated.

 

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

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

 

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

 

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

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.

 

Gill contrasts her experiences of two research projects. One member of staff could not answer her questions, but the other was much more knowledgeable.

I’d forgotten about this one, but I was asked to provide an extra blood sample. This was during the same period of time, so during the course of my breast cancer surgery. And it was providing a sample for what I presume was a local study for blood marker assays. I don’t know what they are [laughs]. And I just got a leaflet and was asked if I would give a little extra blood, during a normal blood test a little extra blood which would then be used for doing research around cancer. And as I say I can’t remember what assays mean, because I’ve only just found this leaflet again. I’d forgotten all about the fact that I had done that. 

 

And in fact the nurse who took the blood didn’t know anything about it. So I did ask her at the time and she didn’t really know any more about it than that, than the information I’d got. So, yes, it - yes, it’s not, it’s not hugely helpful, this leaflet. [laughs] Well, it’s two sides of A4, which really doesn’t say a great deal. I mean the purpose of the study is that small two paragraphs there, very, very small.

 

I think it would have been helpful for her to have known something about it. She, she just sort of, “Oh, yes, I think I know what you’re talking about” sort of thing. But, yes, I think so. And had it been at a different time I would probably have asked for more information on this one. 

 

Because I think you talked last time about problems with recruitment often stemming from a lack of involvement of –

 

Yes, yes.

 

-- those staff at the front line.

 

I think that’s true. I mean, it doesn’t inspire confidence if the staff involved don’t know what it is they’re taking the sample for, and can’t tell you a little bit more about it. I mean it doesn’t, it isn’t a lot of information that they would have to carry, I think, but at least to know what the basics are about this. And then, you know, if there are more detailed things you want to know, to be able to point you in the right direction for somebody to help I think is really important. Because it, you know, gives you confidence that somebody knows what they’re doing and it’s going to the right place.

 

And with the tissue bank, was the person taking consent informed about the study?

 

Yes, yes, she was much more involved. I think she probably did this as her full-time career, [laughs] full-time job. She was actually sitting and talking to patients. As part of your clinical appointment there was a sort of ten minutes with her to, if you wanted to do that, to talk through the donation of surplus tissue. So that seemed much more structured, and well set up, and I assume that’s been going for some years.

 

UK Biobank staff told Gill that her blood pressure was high. They encouraged her to follow this up with her GP because their tests do not provide a not full health check.

One, I mean there was some, or has been a little bit of personal gain, if you like, from this, because they do give you the print-out of your various measurements and bits and pieces. And actually my blood pressure was quite high. So I have followed that up. And, you know, it perhaps would have come to light anyway, but I found that quite useful. And it was nice to have, to know what my bone density was and my lung function and those sorts of things. It was quite interesting to get, to get that listing. So there is something you can take away from that, yeah.

 

And you get a print-out of your results, which is a limited number of things that they feed back on. But it includes your height and weight and body mass index. And it has at the side of it a list of whether that’s good, or not very good, or very good I suppose, so that you get a little bit of feedback, which is actually quite a nice thing to take away.

 

And with the blood pressure, did it say anything such as, “We would suggest you talk to your GP” or?

 

The nurse who took it said, “That is high. Your blood pressure is quite high. You should be aware of that.” And I said, “Do you think that it’s high enough for me to talk to my GP?” And she said, “Yes.” And then when I got the print-out it just said, “Very high.” However I have been going through a very stressful time of my life, with my mother moving house, so it may be that it will settle down. But at least I know, you know, I took that information and followed it up with my GP, and I am now being monitored. So that was, that was a good outcome for me to have that and, you know, it’s useful to know what, whether there are issues and problems with those areas. But they are very specific about it not being a proper health check, that you mustn’t assume that this is a, something that is the same as a full health check, and that they won’t feed this back to your GP. It’s up to you if you want to take it to your GP. So I think that comes across very clearly, that you’ve got to be aware that this is just, you know, some information to feed back, but if they find anything, they wouldn’t feed it back to you. So, you know, I, yes, that was very clear to me. So it was a really interesting thing to be involved with. It did take me half a day to do it, but that’s okay. And, yeah, I mean there’s an awful lot of information there. And I suppose in terms of how it’s used, I presume the tissue samples are most useful if they also have some personal history details attached to them. And although maybe anonymised, there are various bits of information that would be necessarily attached to that in some studies. And I would hope that -and I am confident really - that this will be respected. It’s very public. This is a big, you know, high-profile bank and I think if anything goes wrong it will hit the media [laughs]. And I, well, I’m sure it is well regulated. And I shall, you know, be very interested to see how it pans out.

Gill hoped both her own family and other people might benefit in future from her donation. The tumour samples would only go to waste otherwise.

 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.

Gill donated to the UK Biobank because she believes she has benefited from other people doing similar things over the years. There was nothing in the information that worried her.

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.

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.

 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.

Gill would not like her body to be used by medical students or dissected on TV. She had not thought about brain donation before but would probably be willing if her family agreed.

Would I donate my brain? Oh, gosh. I don’t know that I would. I have, I carry an organ donor card and I’m very happy for bits of my body to be transplanted if they’re of any use. Yes, I probably, I probably might. But I can’t say I’ve thought about it [laughs]. Perhaps I should do. Yes.

 

Well, I think that maybe the issue that they were trying to raise is that, you know, we, we have got quite a long way down the track with organ donation for –

 

Yes, yes, absolutely.

 

-- for transplant, but not retention for research.

 

Yes, for research.

 

And maybe we need to get people to think about it more?

 

Yes, yes.

 

Because --

 

The one –

 

-- I guess a lot of, you know, Alzheimer’s research and Parkinson’s and things –

 

Yes, absolutely, yes, yes.

 

-- that’s something where they really need both healthy and unhealthy brains, as it were.

 

Yes, yes, yes. I think, the only thing I can think of where I think I don’t think I could do this and that’s, is to donate my body for medical students [laughs], which philosophically I think I shouldn’t worry about that, because whatever happens to you afterwards is not an issue. But I just have this feeling of it being scrutinised and I just... [laughs]. I don’t know. I don’t feel very comfortable with that [laughs].

 

Well, I guess it links to the point that you made way back about knowing that things are being treated with respect.

 

Yes, yes, I think so. And I certainly wouldn’t want to be that televised corpse that they dissected, that chap that did that on television, which I just think, “Oh, I couldn’t.” I just, I don’t like that. So, yes, I guess a line can be drawn at some point [laughs]. But probably my brain, I would not be too concerned about that, unless my family had feelings that they didn’t want that to happen. But I see no reason why not. Yes, oh, yes, I think it is about respect. And it’s about the circumstances under which it would be used.

 

Yeah, purpose and all of that.

 

Yes. And I know medical students have to learn on real bodies. But, I don’t know [laughs]. Sensitivities creep in.

Gill tried to answer the UK Biobank questions as honestly as possible, but found it difficult to base her answers on the last week.

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. 

Gill recognised quite a few people she knew when she attended the UK Biobank. She wondered if people's privacy was sufficiently protected during the appointment.

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.

It is important to Gill that her samples are treated respectfully and securely stored, and that her confidentiality is maintained. She feels the Human Tissue Act has improved research regulation.

Does that now make you kind of reflect on how secure and confidential things are being kept?

 

Well, I think that for me that was the biggest thing I had to really think about with the Biobank, because my concern isn’t so much about what I’m giving, but being sure that it’s being treated with respect. And that means, you know, confidentiality and ensuring that it’s safe and secure. And, you know, you do hear of data being lost, and hackers hacking into databases, and all these sorts of things. So it is something that I considered. But at some point, and I know things like the research regulations, research governance is sort of tightening things up, and we’ve got the Human Tissue Act which, you know, I know that there are licenses for storage and inspections and new regulations. So that does give me a little reassurance there. And at some point you have to decide on the balance, don’t you, the good against potential for problems. I mean there’s always something that can go wrong. But at the end of the day it’s a leap of faith. And the balance for me was that this was a really important thing to be involved in, and I was happy to go through it and give, well, tissue samples and also huge amounts of personal information [laughs]. Which was interesting as well.

Gill feels informed consent is an essential principle, and is pleased that procedures have improved hugely since the Alder Hey enquiry.

 Well, of course it all sort of harks back to Alder Hey* and the awful - I mean it must have been pretty awful for those families to know that bits of their children - and, you know, the consent procedures were not in place, were they, for storing tissue. I think it has been very highly magnified in the, in the press. But that has led to better regulation. I mean the Tissue Act, the Human Tissue Act, and better regulation and increasingly the sort of focus on consent, which I think is at the very heart of this. And I’m very pleased that it is. But I think now we need to move on from that and, you know, lessons have been learned and things have changed and…

 

Because the flipside is that you end up making it harder to do research?

 

Of course, and more expensive to do research. And it has to be a balance, doesn’t it? But at the end of the day I think it is the right thing to do, to involve and include the people who are your research subjects, if you like. Because I think people genuinely, most people, want to help and want to be part of this and want to know that they’re doing that. And therefore I don’t think that it should be not done because the researchers don’t think it matters, or the researchers think, “Oh, well, they wouldn’t give consent, so I won’t do it.” I think it has to be a partnership, and I think the appropriate level of consent is a really important principle in all these things.

 

* FOOTNOTE' This refers to the discovery that a pathologist at Alder Hey children’s hospital had been retaining organs without consent after post mortems in the 1980s and 1990s. The investigation into this case was one of the factors which led to the setting up of the Human Tissue Authority. 

Gill's understanding of the UK Biobank is that you give your GP's details so that researchers can link your sample with your medical records in future.

Well, you do have to give your GP details, I think. Yes, I’m sure you do. And they will be following up, yes, and linking, which certainly was one thing that, you know, it’s a bit, there’s a bit more to it than just donating something, as you say. So there is a long-term sort of link-up. And I gather you may be invited back for further assessments or something like that. I’m not sure what.

Gill is quite happy to check the UK Biobank website for news on research using the samples.

How important is that, do you think, knowing what the results might be?

 

I think it’s very good to engage with people. Because if you’re doing it because you think it’s going to help, yeah, it is really good to get some idea about how that’s being used, and you feel more part, perhaps, of that research effort. So yes, I think it is important.

 

And do you think their website gives a good route in to finding what’s happening with the research? Or would you like more from them, sort of personalised?

 

No, I don’t think so. I mean it’s got to be a balance in terms of what the money is being spent on, and I wouldn’t wish them to be investing large amounts of money, large amounts more money in contacting me. I’m quite happy to go on the website and check to see what’s happening, which I do occasionally. And they’ve got videos on there and all sorts. So, yes, it’s, I think it’s an interesting, very interesting to be involved in that.

 

And again that’s one where the uses are kind of uncertain.

 

Oh, absolutely, yes, yes. But again I think, you know, the purpose is very laudable. You can’t tell what’s going to be happening in the future, you don’t know what kinds of research are going to be necessary. But I think that there are good structures to, in place to regulate what’s there and each study will be going through processes of ethical approval and so forth. So I, yes, I think it will be very interesting to see what it does produce. And if I read about some great breakthrough in the future that’s had information from Biobank, well, that’ll be great. I’ll be very pleased about that.

Gill encourages people to consider seriously taking part in biobanking sees it as a 'community duty'. Having seen her father's experience of stroke, she knows how important it is to develop better treatment.

Well, I think just an encouragement to not dismiss it out of hand. And I think certainly with Biobank, you know, because I know a lot of people who were invited, because, you know, friends of mine were invited into this, I know a lot of people who turned it down without giving it too much thought, really. Because they said, “Oh, I haven’t got time for that” or, “No. It smacks of Big Brother having all my details and stuff.” But I think you need to think about these things seriously. And I think it is important that we learn more about diseases that are likely to - well, kill people - but also to leave people with a, to leave people with a poor quality of life. I think that any information that can help us to live healthier lives, because we’re all living longer, and we’re living longer with a whole variety of disabling conditions, and I think anything that can help that, if not for yourself then for future generations, your children, is really important. I, my father had two strokes and survived both of them, the second time in an extremely poor state. And I know that the first stroke he had was at a time when the responses to stroke were to wait and see what happens. And I think that we know so much more now about the speed at which you have to intercept and do something, and I feel that he would have had much more chance of - certainly after his first stroke - of having a better recovery. And that’s down to people doing research and using that sort of information to help. And I think that has to be a good thing. So I think people should be involved in research. I think it is a community duty, really, to consider and to get involved in research that is going to help everybody.

It is important to be able to have a discussion with staff who understand how the samples may be used, and for researchers to give feedback on all the studies in which your sample is used.

I think the consent procedures are very important. It’s good to have clear information and plenty of links to people who you might be able to ask questions of if you have questions. And certainly with the experiences of the first two tissue samples through, related to my breast cancer, the fact that somebody, you can talk to somebody who knows about the study, even if it’s, you know, fairly, fairly general level, is really important and gives you some sort of trust that this is something that they know, they know about. I think that’s important.

 

Messages. I think the main message for me is that with big studies, certainly - well, with all studies - it’s really good to be involved, to be able to follow and track what’s happening, and to perhaps get access to the sorts of things that might be happening. I don’t expect anything that is pertinent to my particular sample. But to feel and to get, to get information about the types of studies, what perhaps has been successful, what has been learned from use of Biobank, in this case, or tissue banks is very, very good. And I think that researchers should include that element within their plans to disseminate to the public.