Gareth

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. His ethnic background is 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 (though 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.

Interview conducted in 2010.

Gareth has a family history of high cholesterol, so he likes to keep track of it. The study he is taking part in is one way of doing that.

I have got a family history of high cholesterol, so I’ve always been interested in keeping an eye on my cholesterol. And my dad did die young. He died in his 50s, so- of complications of heart disease. And my two sisters both have very high cholesterol. So I’ve always been interested in my cholesterol and metabolism and that side of it, and just keeping track of it. I’ve never had any problems with it. It’s always been mid to low range. So it was just a, as I say, it’s one of these things I like to measure, and if you don’t measure it, you don’t know when it’s changed, you know.

Gareth is a healthy volunteer in a study. While not willing to take part in studies which involved testing new drugs or being injected with insulin, he felt by being a healthy volunteer he could provide useful data for research studies.

There was, a few years ago there was, three or four people were extremely ill on, on drug trials. And certainly, knowing about that, if there’d been drug trials involved, I probably wouldn’t have been at all interested. 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.

 

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.

Gareth hadn’t realised his DNA screening data would be held in a database. Finding this out at a later date was “slightly surprising”.

And it was at that point, I hadn’t realised until up to that point when they talked about what I’d got myself into, that all my samples had gone off and they’d put me on to this national - they’d done a full DNA screening on my blood - and there was now this, it was now part of this growing DNA database that the group is maintaining. So that was interesting, and sort of it was slightly surprising. You think, “Oh, there’s this computer somewhere that knows more about me than I do”. But, yeah, that wasn’t off-putting towards the study.

 

Yes, I suspect it was in the information. Because the reason I took part in that one was really to get a free blood test and a bit of a, you know, check-up on the body and things like that. So I suspect I wasn’t rigorous enough in reading that one, because it was - and I haven’t been able to track the paperwork down since. It’s not surprising, I mean it was a couple of years ago and it’s around in the house somewhere. And then, yes, and when I went back for this trial, and they said one of the ways they select potential candidates for trials is to go, to use the DNA database because they can pick up specific genetic abnormalities or genetic traits that research groups want. So I did question them on that a bit because it, I wasn’t quite sure how they were sharing the data. But, you know, they were quite reassuring in that they don’t sell the data, and they don’t just free-issue the data. I think they mainly act as a service to find potential lists of candidates. And I think they would then, they would, if candidates, I’d be approached by the group that hold the DNA database rather than them just passing my details on. I don’t think I’ve given them consent to pass my details on to anybody else. I hope I haven’t [laughs]. But, you know, my expectations are, or my understanding is that they own the database and then they restrict, they’re, in fact they were quite clear they’re very restrictive on who can access the database. And although they’d use the database to generate potential genetic traits, they wouldn’t pass that information on. They’d approach the DNA owner, I think.

Gareth took annual leave to attend a study visit. He didn’t think he could tell work it was a medical appointment and instead tried to frame it as a community service activity, but in the end had to take it from his holiday entitlement.

Having done this now, you know, if I was invited back to something similar to insulin then I’d probably be more likely to give it a second, you know, give it some serious thought. I mean, the downside to it is that I don’t think - they did ask me if I’d come back and give some more biopsies, but it’s, the problem is it takes half a day out of my annual leave and having already taken one to do that, and lost a day with all the snow at the beginning of the year I’m running low on annual leave. So it’s, you know, one of the things that would limit it is just how much holiday I have in any particular year or whether, or whether they can tie it into when I’m actually on shutdown. So that’s actually a limiting factor at the moment.

 

Yes. I was tempted to take it as a sort of medical appointment, which I could say without lying [laughs], but I didn’t. That wasn’t right. One thing my company does support is actually working in the community - and I did fly that past them and say, “Oh, you know, it is a community service”. But they weren’t too keen on that either. I didn’t push the medical side of it. I sort of just said, you know, “I’m doing a bit of research. You know, would that count?”