Tony - Interview 20

Age at interview: 33

Brief Outline: Tony and his partner recently took part in a biobanking study, which involved donating samples of urine and blood for future use.

Background: Tony is a lecturer in art and design. He has a partner (BIO21) and they have two children aged 16 & 13. His ethnic background is Anglo-Irish.

More about me...

Tony and his partner recently took part in a biobanking study, which involved donating samples of urine and blood. His partner works as a research nurse and this is how Tony was introduced to the project. During the research health measurements such as blood pressure, heart rate and cholesterol levels were recorded from each participant. These recordings were used to compile a database of health measurements which others may be compared to. Blood and urine samples were also taken and analysed during the research.

 

Tony describes how his motivations for taking part in the research were a combination of both selfish and altruistic ones. Tony is keen on endurance exercise, particularly cycling and he explains how with this comes a curiosity in fitness measurements. His interest was furthered because he was previously diagnosed with atrial fibrillation (an irregular heartbeat). He explains how participating in the project provided an opportunity to have a free medical consultation so as to keep track of his health and inform him of his fitness levels. More altruistically Tony was motivated to take part in the project as a way to help with medical research which he believes is a valuable cause. 

 

After participating in this project Tony would be willing to take part in similar research in the future. He advises others to do so because he found the whole process very interesting. However Tony recognises that not all medical research is of the same value and explains that he would always consider the purpose before agreeing to participate. Tony believes it is important that the data he provides is used appropriately and responsibly and so would not participate in any medical research without looking into it first. He would be very interested to find out the overall findings of the project he participated in and not just his own personal results. He describes how this would fulfil his altruistic motivations as he could see the difference that he has contributed towards. Tony feels researchers should perhaps provide more information about aims and findings as this would be of interest to participants and may also act as a way to encourage people to take part.

 

Tony donated a blood sample as well as providing some additional information.

We turned up, we were weighed, we, our blood pressure was taken, our heart rate was taken, our height was measured. It was basically those sorts of measures, basic measures. And I think some blood was taken as well. And the blood was later tested for various things. And we got some, and we got a report back saying where we stood in relation to, to all these measures in terms of, I think , you know, where our blood pressure was, where our body fat ratio was and all those sorts of things. It was basic metrics, I suppose, for medical health.

Tony explains how he became involved in biobanking because of his partner.

I heard about it from Louise because she’s a med-, a research nurse at the hospital. And we’re both endurance, we’re into endurance sports. Louise runs and I cycle, and what goes along with that is often a concern about heart rate and blood pressure and all these sort of things, slightly unhealthy perhaps, occasionally. But anyway, we’ve got a concern about these things. And it seemed, it seemed to be both a useful and interesting thing to do, to get a medical check to see where we are in, by all these medical measures. That was certainly one, one aspect of it. And also I suppose a general belief in that, helping out the research world, medical research world, in that, with the idea it may contribute in however small a way to the general good, I suppose. Those are the main motivations, I would say.

 

So how had Louise heard about the project?

 

To be honest I’m not quite sure. I mean she comes across these sorts of things at work often. We often discuss some of the, you know, research that she’s undertaking and that’s all I can say, really. I’m not entirely sure the exact process by which we became aware of it.

Tony did not feel he got much information about how to interpret the results and what would happen if the biobank found anything seriously wrong with his health.

Was there any other information that you would have liked that wasn’t in there?

 

I’m not sure. I mean... I suppose it’s, some information about when you were testing for blood pressures and so on what, what would be considered normal. Although – you know, what are the average readings, measures for these, you know, for whatever test they’re doing. We did get that afterwards, but I suppose some idea beforehand may be useful. Any potential adverse - I’m not sure I was - you know, I suppose you could get some shocks, I suppose, from these things. You could get some, I could imagine some people coming in there completely unaware of potential things that could have been wrong and then having a big shock, but I’m not entirely sure that was addressed. I know that’s, because Louise was there, and I’ve got a feeling, actually, because they knew she was a nurse, that there was the assumption that there was a level of knowledge there which was, well, which was there, in fact [laughs]. And that may have been part of the reason, but I can imagine you getting a big shock [laughs] and I’m wondering whether that was really catered for, although I don’t know if it wasn’t, yeah.

 

So there was quite a bit of discussion with them on the day, as well as in the information leaflet?

 

Some, yeah.

 

Yes.

 

I wouldn’t say there was a huge amount.

 

Before you gave consent, this was?

 

Oh yes. I mean I would say I gave informed consent. I mean, but I would also say, you know, I had a fairly clear idea of what was going to happen anyway. It wasn’t, like I was saying earlier, none of them, none of the tests came back in a way I didn’t anticipate. But it certainly was possible that it could have, and I’m not, I’m not sure that that was necessarily covered in the way it could have been, if somebody came back with some terrible readings with their heart or something like that, and it really did necessitate further investigation. Whether, you know, if that had happened to me I’m not sure I would have been prepared for that.

Tony has a heart condition (atrial fibrillation), so is always glad to have extra health checks. Taking part in biobanking meant he would get the equivalent of a free medical exam.

I suppose there was another angle for me as well, which I hadn’t mentioned earlier, which was that I had been diagnosed with a bit of atrial fibrillation a few years back. And I suppose there was, it was sort of a way of getting another check to see if there’s, if that’s emerging as, you know, a large issue, a larger issue. And it wasn’t, but there was that sort of aspect to it as well, sort of [laughter] using it as a sort of a free medical consultation, if you will, yeah.

 

I don’t think you’re alone in that, actually. I think a number of people kind of see these research opportunities as a way not to have to bother the doctor but to get something extra.

 

Well, the one thing I noticed when I bothered the doctor about this atrial fibrillation thing is that it’s, it triggers a bunch of formal responses. All of a sudden you have to declare it on insurance forms, and all these sorts of things. And you know I was under, I was more in control of that aspect - I feel, anyway. Also the doctor, my doctor did get a copy of the results too. 

Tony said he was motivated to donate to help others, but also to benefit himself. He thinks it is important for participants to get feedback about the research so they can know how much good they have done.

The motivation like I was saying was mixed - sort of personal ones and I suppose slightly more altruistic ones. Which, which was the dominant…

 

The altruistic ones were the dominant ones?

 

No, well, I would say, you know, which were - I wouldn’t - do you know, I don’t think I could say that, in all honesty. I mean I’m not, if I didn’t, if I wasn’t with Louise I’m not sure I would have heard about it in the first place, and I’m not sure I’d have got over the inertia of bothering to come up to the hospital to do it, if I hadn’t been involved in sports and stuff like that and had some interest. I’m not, in all honesty, I’m not sure. I would like to think I would, but I’m not sure. That’s not to say the altruistic part wasn’t a serious issue - I do seriously believe in medical research, and if you believe in something you have to act on it, it’s not a question of just verbalising it. And so there is certainly that element there, but which dominates would be wrong to say.

 

Mm, a bit of both?

 

It’s definitely a bit of both, for sure.

 

And did they say anything to you about whether they would provide that kind of feedback?

 

I don’t remember. I can’t categorically say no, [laughs] but I don’t think so. I don’t think that was covered perhaps as well as it might have, because I think that would, that would add to the attraction of actually taking part, I feel.

 

I mean it plays into that altruism business, doesn’t it? I mean altruism – “I want to do some good in the world.” Well, what good am I doing if you’re not telling me what the outcomes of these things are.

Tony would be interested in further studies, but he'd want to know of any risks involved, and whether the research was worthwhile. Not all research is of equal value.

Do you think now having done this one that you’d be more likely to respond to another request?

 

Yes, I do. Now I’ve gone through the process and so on. Well, clearly it depends on what’s being asked of me, but certainly I reckon I would be more likely to do it, yeah.

 

When you say it depends what’s being asked of you what are the kind of things that would make you hesitate about saying yes to another project?

 

Well I’d want to know the type of research. I mean, what - I suppose on a purely selfish level there’s going to be' are there any benefits? That’s bound to be a question. But that wouldn’t necessarily rule out me taking part if there weren’t any, if I felt the research was worthwhile. I would - I mean I’m not silly enough to believe that all research is of equal value, and, and I would have the, retain a veto right. I would want to make that determination for myself. I’d want to be explained what role this research is happening and what and what’s the, what’s being looked for and how they’ve gone about it. There’s a lot of – I’d like to know, that’s basically what I’m saying. I wouldn’t say, it’s not a blanket ‘yes’ to everything any potential research but I’d certainly, definitely consider it.

 

Would you be willing to think about drug trials for example?

 

Well, those are the ones I’d be more suspect. I mean, I would want to know about precisely what research had gone on prior to it, what the, the risks were, if there were any risks involved, whether it was – again, the quality of the research. I’ve done that, you know. Although it’s not my background, I’ve done, I’ve read enough about research to know there are, there are different levels, different levels of quality of research. I mean I would want to know that what I’m contributing to has a real value.

 

And…?

 

That would be a determinant.

Tony thinks contradictory reports in the media make it difficult for people to weigh up research evidence and the quality of the research.

But on the whole, no, I don’t think the media handle it terribly well, but I don’t think it handles science generally well.

 

Also there’s the other aspect of it as well, the medical one. We’ve all got a, we all have an interest in medical stuff and perhaps we’re all slightly... tend to, prone to faddish - or to be buffeted around by bits of research. You know, all of a sudden glucosamine doesn’t help joints whereas it did beforehand, where, you know, olive oil does good for your heart and then there’s a bunch of research that says, well, there’s no really good evidence for that as well. And unless you’re professional, it’s very difficult to weigh up the quality of that research, unless you’re prepared to put a lot of time into it. And you can, but actually there isn’t that much time in the world. And you feel like you’re buffeted around a little bit by the findings which are presented in the newspaper. Even in rags like the New Scientist, you know, there’s, you get one report the next week, and another report the next month, and so it is quite difficult to keep up. And of course the rate of research as well, new stuff on what’s been done, every fortnight. I believe even professionals within their own specialism can’t often keep up with it.

As part of one study, Tony and his partner had to wear activity monitors. He felt the monitor didn't pick up certain forms of exercise. It seemed to work better for his partner's running and less well for his cycling.

So just remind me what the individual feedback components were that you were given. There was body fat?

 

There was blood pressure, I think there’s a blood sugar level – oh, cholesterol level. I’m running out now [laughs].

 

And did they do a sort of like a heart, did they do some heart tests or what did they?

 

They did do, yes. Work, it was a work measurement thing. It was on, I think it was on the hand. We put a wrist thing on, I seem to remember, and it measured the amount of work you did over the 24 hour period, I think it was, yeah. And it was sort of interesting, but it was – although there were some problems about what it actually measured because if you did certain types of exercise it registered pretty well. Louise runs, whereas I did cycling, and it, because of the nature of the exercise - it’s fluid and smooth - it doesn’t register anything’s going on, hardly. But I mean [pause] - I mean, yes, so it basic measurement of how much work you did in a day, and it gave feedback about how much, about what was the essential amount to do in a given day, or what was considered not enough and what was a lot.

Tony thinks it's sensible to track his future health records against his biobanking data but would be worried if it became identifiable.

Is one of the elements of the project that they’ll link to your future medical records to sort of compare your health now with what happens in the future?

 

Well, it is, I suppose. It must be, you know - 53 now and I suppose, you know, there’s less life in front of me than there is behind and you get slightly more concerned about health issues. And I have to say I consciously thought it would be good to get a sort of benchmark now to measure things against in the future. I don’t - you know, yeah.

 

I guess I, you know, it’s my assumption they’re going to do that. It sort of doesn’t seem sensible just to do a, get a benchmark and not to track at least some of those people through, over a long period of time. And, you know, certainly that makes sense, and I would continue with it, you know, if they contact again.

 

So you wouldn’t be worried about the...

 

The implications of it? No, because it’s, it’s useful to me, I suppose, as well. And again I’ve tapped into that usefulness and it’s seems daft to volunteer for one part of it and then refuse to act on, you know, carry out the full commitment, so to speak.

 

What if they weren’t going to tell you? I mean if they were just sort of doing it independently, monitoring your sample and then your future medical records, but it wasn’t ever fed back to you?

 

That would, there’s certain aspects of that could, you know, could well concern me. It depends whether they’re doing it anonymously, and if that information is going, you know, my identity’s being connected, in a way which is then accessible to other, you know, third parties, insurance companies and so on, then that is a concern [laughs]. That’s not what I signed myself up for. I don’t want insurance companies poking around without my say so.

Tony would be interested to know the results of the study, but couldn't remember if the researchers had said they would send him feedback. Getting feedback would add to the attraction of taking part.

Would you like to know more about what the overall research project finds over the years as it goes forward?

 

Yes, I would, actually, now you’ve mentioned it. Yeah, because you get the sense that they sell the whole thing to you on that basis and it is interesting to see what – well, I’d find it at least a little bit interesting, and it would be good to be able to track that, and I think that is something that should be done, actually. Particularly if, you know, if you’re going to be involved in it for later on, if they’re going to be coming back to you. But I mean even if that weren’t the case it would be nice to get an overall picture of what, what role, however small, that bit of research played in a general pattern of research or what impact it’s had on the world.

 

And did they say anything to you about whether they would provide that kind of feedback?

 

I don’t remember. I can’t categorically say no, [laughs] but I don’t think so. I don’t think that was covered perhaps as well as it might have, because I think that would, that would add to the attraction of actually taking part, I feel.

 

Mmmm yes.

 

I mean it plays into that altruism business, doesn’t it? I mean altruism – “I want to do some good in the world.” Well, what good am I doing if you’re not telling me what the outcomes of these things are.

Tony wanted people to know that giving biobanking samples for research felt like 'contributing to the world'.

Generally, I’d say go ahead. It’s an interesting process, you feel that you are contributing to the world, which is a good feeling in itself, and also good could come out of it. So I feel that generally speaking it’s a positive process. Certainly the way everybody dealt with me it was very professionally, they were very informative, the whole experience was useful and interesting.

Finding out how your contribution has helped research could encourage future participation.

I suppose that on that issue we touched on earlier, where we were talking about keeping people informed about what happens after your part of the research, give them some sense of the big picture. Because that’s partly why you got involved in the first place, I feel, and it could well encourage more participation, my feeling is.