Gareth - Interview 11

Age at interview: 49

Brief Outline: Gareth has taken part as a healthy volunteer in two studies run by a diabetes research group, including a recent one which involved giving him adrenaline and taking fat biopsies. He declined to take part in one which involved being injected with insulin.

Background: Gareth is an engineering manager. He is married with two teenage children. Ethnic background/nationality' White British.

More about me...

 Gareth was first invited to take part in a research study as a healthy volunteer in 2008. It was a study looking at metabolism, run by a diabetes research group, and involved giving blood samples. He had hoped it would also include a body mass scan, but the researchers already had enough volunteers for that element. Gareth was interested because he likes to keep healthy and monitors his exercise and weight carefully, and found it helpful to have some extra information about his health. There is a family history of high cholesterol, and his father died in his 50s from heart disease, so it was reassuring to have the blood tests.

He also felt it was important to help the research so other people could benefit in future. As an engineer, he knows it is essential to understand how something is normally supposed to work, so you know what to do when a problem arises. In the same way, understanding how normal metabolism works in a healthy body may help improve treatments for people with diabetes.

 

About a year later, he was invited to take part in another study by the same group, which would have involved being injected with insulin. Gareth was a bit surprised (thought not particularly worried) to discover his results from the first study had been included on a DNA database, which was then used to recruit people for further studies. He decided against that study, as he did not want to be exposed to any possible risk from having a substance injected unnecessarily. Insulin was something he associated with illness.

 

Most recently, he was asked to join a study on the metabolism of adrenaline. Although this also involved being given a substance, in this case he felt adrenaline sounded safer than insulin, and it was something he felt familiar and comfortable with from his exercising. However, he did send the information off to two of his uncles who are doctors, to get their opinion about it before saying yes. The study also involved injecting radioactive xenon, which his wife was a bit worried about. Gareth took some questions with him to the clinic appointment and felt they were all answered to his satisfaction, so he agreed to take part. He had two cannulae taking blood from the back of his hand and his thigh, and a drip into one arm to give the adrenaline. All of that was fairly straightforward. Then two fat biopsies were taken, one from his thigh and one from his stomach. This was rather more uncomfortable and left quite a big bruise for a week, though he had been warned this would happen.

 

He has felt well informed and well cared for throughout, and trusts the staff to look after his data and samples appropriately.

 

Gareth took part in a study to find out about healthy people's metabolism, as part of a diabetes and endocrinology research programme. It is important for research to understand how healthy bodies work.

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.

In spite of the anaesthetic, healthy volunteer Gareth found the biopsy a bit uncomfortable. The thigh sample was less painful than the one taken from his stomach.

Every time they stuck a needle into me they put a smaller one in with lidocaine in so it was locally numbed.

 

And then at the end of it they just said they wanted to take some biopsies. And they were the slightly more painful elements, in that it’s a much bigger needle, despite the lidocaine. And I’ve got a photo of the bruise, if you want to see it [laughs]. I took a picture of it afterwards. But it did bruise quite - they take one out of your stomach and one out of your thigh. The thigh was fine, and I think it’s just to do with the muscle mass. And they, what they were doing was extracting a very small amount of fat, in order to analyse it. 

The information Gareth received for several studies gave a detailed explanation of what would be involved, but he was glad he had someone medically qualified in the family to discuss it with.

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.

Gareth's uncles helped him to think about questions he could ask the researchers.

But what I did do was then send it off to a few relatives who are in the medical profession, because I’ve actually got two uncles, one used to work for [a research organisation] and retired, and the other one used to work up at [a university], and they’ve both been involved in aspects of medical research. And in fact my sister also works at a university in Canada, although I didn’t ask my sister because I didn’t think it was fair to ask a member of the family whether I should go and get needles stuck in me. And I thought, “Well, either she’s going to say yes to get her own back on something I did when we were small, or she’ll say no because she, you know, she wouldn’t want to say yes to something that, you know, might have risks.” But I felt my uncles were sufficiently removed that they’d give an honest answer. And they read through it and they made some quite amusing comments, sort of, “They’re still researching this sort of stuff?” and, you know, “Radioactive xenon. Whatever next?” And, you know, they said, they read through it and said, “Yes, that looks fine. Go for it.” And they also passed it on to my, one of my cousins, who’s a - I can’t remember if he’s a GP - he’s a doctor, anyway. And his only observation was, “Why are they sticking some of the cannulas in your thigh rather than in the back of your hand?” And they gave me a few questions to ask, you know. 

Gareth, a healthy volunteer, has a history of high cholesterol in his family. He was able to have it checked in a biobanking study and was reassured to know that it was normal.

But I think I’ve just been looking for an opportunity to do something, while I was still healthy, that would help, and, you know, if I’m lucky it will have some benefit for me when I’m older. But that wasn’t, it was just because I could and I felt I should. So that was one part of it. And then the other side of it is just an awareness - as I say, my dad died in his 50s of heart disease, and high cholesterol runs in the family. An aunt died of it relatively, well, I think in her 60s. So it’s just I’ve always kept an eye on my, I’ve always been told to keep an eye on my cholesterol and going along to something like this - I do get medicals from work these days and they do quite thorough medicals on you and give you blood tests. But every opportunity - again it’s the scientist and the engineer - I sort of, “Well, if, if they measure it like this over here, what sort of variation do you get in all these things?” 

Gareth was told that his cholesterol was normal. He finds research really interesting as a means to get more information and satisfy a curiosity about his own body.

So I’ve always been interested in my body weight and my body mass, and I have seen it go up and down. So, and I’m always keen on information and data. I always record when I exercise, record my weight and anything that gives me some more information to go on would be interesting.

 

So I went along, and they just did some blood samples, a body mass index and some various tests. And then they - I had hoped that they were going to do a body mass scan, which was one of the things that was suggested as being part of that study. In the end they didn’t need any extra volunteers for that one. So they did that testing, and came back to me in a nice little letter saying my HDLs and LDLs or my triglycerides, or my - I can’t think what you call it now. What’s the real name for it? [Checking information sheet] Cholesterol levels, all my cholesterol levels were fine, which was again one of my interests in that.

 

And then towards the end of last year, 2009, a second invitation came to one on the metabolism of adrenaline, which despite it being equally invasive didn’t, it appealed to me. It was possibly the sports side, you know - adrenaline and all that, that’s good for you, it’s, I can see the benefits. So I thought - and I generate plenty of it myself, so what can be the problem with that? So I volunteered to do that one and went down for some initial investigations. I signed up and went through a bit of a pre-screening, and I went down in January this year to do a pre-screening or to do some physical measurements.

 

And that was the opportunity, they actually put me on the scanner and did the, scanned an X-ray scan for body mass and body fat, which I thought was fascinating. I thought it was really interesting to see a colour map of where the fat is on my body and just, “Oh, yes, that’s where I’ve got to put a bit of exercise in at the gym at.” Things like that.

Gareth has been familiar with research since childhood, because his dad was a pathologist and 'the blood bank was just along the corridor'.

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.

Gareth explains how he said no to a study in which he would be injected with insulin because it was too invasive.

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.

Gareth draws a moral distinction between animal research, which he supports, and stem cell research from human embryos, which presents difficult moral problems.

Animals I’m perfectly happy with, to be honest. Again, as I said I lived, grew up in Newfoundland. And I grew up in Newfoundland in the 70s, when seal clubbing was a major issue. And we’d, you’d go fishing and hunt. And it wasn’t - in the States you think of hunting, shooting and fishing as game and trophy hunting - but where we lived, that’s how a lot of people stretched their income to, to live well through the winter. So they’d go out and shoot caribou or moose, snare rabbits, catch fish, shoot birds, and, and shoot seals. I mean the area we were we never, it wasn’t associated with seal clubbing with the white pelt, white coat industry, because that was just a - I could talk for ever on this [laughs]. That’s a completely different subject, you know. But the seals came down in the spring in their thousands and you’d go out and shoot as many as you needed for a bit of food and the skin. So I have probably a fairly robust view of animal life, and that, I think as well as long as they’re treated well.

 

My sister was involved in doing research on rats, and I think it involved dropping them in liquid nitrogen to freeze them, their brains instantly. Well, I might be a bit too squeamish to do it, but I’ve got no objection to you doing it [laughs]. So, no. But stem cell - and I do distinguish between animal life and human life,  and I certainly don’t like, I wouldn’t like to see an increase in the amount of stem cell research that’s done on - I get a bit fuzzy, really, as to where in the fertilis-, you know, when does a fertilised ovum become life. But, to be honest, I think right from the start is when you should be thinking very carefully about what you’re doing with it. I mean there’s, I know there’s plenty of fertilised eggs out there sitting in freezers that will ultimately just be taken out and discarded, because they’ve got too old. But it’s animals, yes, humans, no.

As your body will be no use to you after death, Gareth can't see why it shouldn't be used, either for organ donation or research. But brain donation is 'an odd thing to think about'.

I’m pretending I’m not mortal, as most of us try to do [laughs]. But, no, the times I think about it, I’m perfectly happy for them, you know - if I forget to do anything I hope my wife will say, “Yes, take out all the bits you can and put them in somebody who needs them.” Occasionally, there was quite a big thing recently about donating your brains to the Alzheimer’s or sort of brain research. I mean I, it comes down to again this altruistic - I suspect more people would probably benefit if I gave all my working organs to living people. I mean, I’m not quite sure, I haven’t come to any decision on that. It’s something I contemplate, but it’s really quite an odd thing to think about. You know, what, what do I want happening after I’m dead? I mean, I again come back to my dad. I never understood all this fuss that came out - I know what they did at Alder Hey* wasn’t transparent, but I don’t think it was wrong. And all this thing about this incredible bureaucracy that was loaded on the NHS to track down body parts, to the extent now when, you know, I think if I’ve given my - I think I almost had to sign a consent form that they could take the biopsy. I’m not really sure on that. But you get the impression that any bit of your body they take, you have to sign a consent form or you can expect to ask for it back next year. So I’m afraid I was, I’m not hugely attached to my body and I hope nobody else will be after I’m dead, and certainly to the extent of lumbering a stretched NHS with extra costs just for a bit of... I mean, I trim my toenails and they go in the bin [laughs].

 

* FOOTNOTE' Gareth is referring 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

Gareth said the biopsy was not painful because the area was anaesthetised before the procedure, but he did develop a big bruise.

Then they got to my stomach and they had worried that my blood vessels weren’t quite big enough in my stomach. And they poked and prodded around. I think they had about five goes at it to insert the cannula. And they showed me what they were doing, and that was kind of an interesting thing, just sticking the large bore needle in, then feeding the tube through with a wire and then pulling it back out and connecting it.

 

And despite the fact they were saying, they were using infant sizes, they still couldn’t persuade my veins to accept it. It wasn’t too bad because they were giving lidocaine injections just to numb the areas. So having failed to get the cannula into my stomach vein or stomach artery, I can’t remember which bit it was, they had to drop one part of the test. So we switched the test to just, it was sort of a, [pause] it was a blood flow measurement.

 

And so that was interesting, although it meant I couldn’t hold a book, because I had one hand in a box. But that aside, it was all perfectly comfortable. They, I had a little electric blanket to keep me warm and it was quiet. A bit of Radio 4 to listen to or whatever. I think I switched to Radio 3 eventually, because Radio 4 can be too much after the first half hour [laughs]. And then, that was that side of it. And that was relatively pain free. Every time they stuck a needle into me they put a smaller one in with lidocaine in so it was locally numbed.

 

And then at the end of it they just said they wanted to take some biopsies. And they were the slightly more painful elements, in that it’s a much bigger needle, despite the lidocaine. And I’ve got a photo of the bruise, if you want to see it. [laughs] I took a picture of it afterwards. But it did bruise quite - they take one out of your stomach and one out of your thigh. The thigh was fine, and I think it’s just to do with the muscle mass. And they, what they were doing was extracting a very small amount of fat, in order to analyse it.

 

And, as I say, I’m not a medic or biologist. My dad was a pathologist, but I was never too bothered about that. I grew up hanging round hospital but I was never tempted to it. So my medical understanding is what you get from reading the Guardian, or the BBC website, or things like that, on an infrequent basis. But, so the, the details of that I’m not entirely sure. But they were very good about doing that. They did warn that the biopsy would be painful and would bruise, and could bruise quite nastily and possibly – I think they always have to tell you what, not necessarily is the worst case but, you know, what sort of maybe 80 per cent of the population might undergo. And they said sort of, you know, bruising for, you know, up to six to eight weeks. But in the end it wasn’t. It was slightly tender for about a week, and then after that it was just pretty to look at and just showed that I’d - I could show my kids and say, “Look, I’m poorly. Take pity on me.” [laughs] And that was it. And they sort of, that was it, got me up, gave me some food at last, so I could have a breakfast, bowl of cereal, bit of a mix of breakfast and lunch, some toast, cup of tea, and sent me on my way. 

The staff seemed experienced and made Gareth feel reassured and at ease.

The staff were great. There was clearly a research - I hate to use the word - but I think it was a student, or research assistant, the researcher, the key researcher. And he was, I was slightly worried about how clinically he, how well he’d be clinically in terms of sticking needles in me, because I wouldn’t know, didn’t know how much practice he got. It was quite interesting talking to them because that, so I did say, “Well, how do you get practice sticking needles in? Because you’re actually quite good at it?” And I’ve, you know, after fifty blood donations I’ve had some good needles stuck in me and some bad needles stuck into me by people who should be quite competent. That’s why I was slightly worried about the researcher doing it. And he said, well, he admitted they practised on each other with their consent. So the team practised doing it on each other. And I don’t know whether I should say this, but you can strike it if necessary, but he did admit to doing a biopsy I think on his prof, and he stuck the biopsy needle in where he hadn’t put the lidocaine in. So he put it in where the, where it wasn’t numbed. And I think you only do that once, and if you do it with your prof, that’s probably a good education [laughs]. You’re never going to do it wrong again. So I thought, “Well, it’s obviously a different circle, practising sticking needles in each other.” But, so that, you know, they were quite open about how they got their experience, and…

 

So the researcher was, you know, as well as clearly being good at the research side, he did have a reasonable amount of clinical and sort of bedside manner. And then there was a couple of the nurses and assistants there who were obviously quite experienced on that and they were, you know, very reassuring. They knew how all the equipment worked. They knew how to turn the ultrasound on and off, and how to turn the, I think it was the heart rate monitor, switch it and get it to read the right things. So they knew how all the equipment worked and they knew how to keep you warm and just give you a bit of privacy when you needed it. So that was all, that was all fine. And yeah, they, you know, sat with me and, you know, I said I was fine being left on my own for a bit if they wanted to get on with other stuff. But they were quite, they’d come in pretty regularly and check up on me, make sure I was warm enough, get me drinks, stuff like that.

Gareth is more interested in getting his personal results than the overall results of the study.

And did they say anything to you about whether they’d let you know the results of the research, or keep you in touch with it?

 

They said I’d, they said yes. I, to be honest, my understanding of the way research like that works is that it’ll be three or four years before anything concrete comes out of it. There may be an obscure paper comes out in a year’s time. But I’m not going to be named, I’m only going to be in there as a small data point. And I don’t think I’d get anything out of, out of that. I mean, I came away with [looking off camera at information sheets] a blood screen, a sort of list of my blood, what my blood was like, and a coloured picture of my body showing where the fat was. And that was the amount of feedback I wanted from it. But they certainly said it, you know, the research would be available if I was interested. But I don’t know whether it is, and it’s probably, it’s certainly too soon to pursue it. And by the time it’s out I’m pretty sure I’ll have forgotten about it.