Biobanking

And they ask you all sorts of questions about yourself, and there are some where you think, “Oh, God. This is very personal.” And then you have to remind yourself that this is about research, that you have to have confidence in the confidentiality and that actually, if enough people answer these questions we are going to get a picture about our population, and that if we can do that, we can understand what the different factors that influence their health and their lifestyle are doing. And it will better enable us to improve the health of the population, which of course is what research is all about. So it is an honour to be involved in doing something like this.

 

So they ask you, you do the forms, you do the interactive bit. Then I thought it was all over, and in fact that’s, you find out you’re only half-way through, because then there’s a whole series of other physical things. You have to give blood. You have to pee in a little pot. You have to go and do eye tests and breath tests, and they put your foot goes into an ultrasound machine, so they measure the density of your bone, and they give you some results as you go along. And you’re seeing different people for each stage. 

 

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.

 

Well, with the DNA bank it’s a long-term storage facility, so basically it’s going to be available to researchers throughout the UK, and with collaboration possibly worldwide, and they’re going to be able to sort of continue the lines, the cell lines for a long time. And so it’s definitely a long-term storage proposition that one’s contributing to. And I’m also well aware that they’ve got a multitude of samples, some of which are going to be drawn on in the near future, maybe particularly with things like familial MND, where they’re trying to look for the genes that cause the defects. And for those who are sporadic, who are maybe slightly older, our samples might not be used straight away. They may be further down the line that they need them. But I’ve got no problems with that. As far as I’m concerned, once I’ve donated the sample it is entirely up to the researchers and the Biobank source to decide how they’re used, and I have no particular sort of feelings that they should be used, you know, for one thing and one thing only. Not at all. It’s there to be used as seen in an appropriate manner, in a timely fashion, whenever that time might be. I think with the, with the biomarker study it’s a five year study, and obviously it’s a slightly different proposition in the sense that the samples are going to be compared from all the ones that are taken and to see if something specific comes out that is a marker for MND. So I would expect that we may know a little bit sooner the results of our collective I suppose samples, as compared to the Biobank, which might be in 15 years’ time before, you know, a sample I donated was used, whereas with this I would hope that we would know as a community the outcome of the study, whether it’s in a positive or a negative light, but a slightly more short-term use of the samples.

Over a period of a number of years I have been visiting my specialist. I’ve volunteered for numerous studies and certain questionnaires and so forth, and this particular one drew me to it for what it could achieve in the long run. And it appears that it’s vital to know that existing people who are living with MND are able to give various samples, and have various studies done on them to help research. And it’s an ongoing voluntary process, in which every number of months you are able to see how the illness has progressed and hopefully find what is causing it to progress. I’m now in my second year of the study, and I will continue to go along for as long as I am physically able to. 

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.

So the, I mean, the information sheet was quite self-explanatory. I mean, it basically said what they wanted to use the stem cells for and said that they wanted it for research to - well just for research purposes, I think. It wasn’t very, it wasn’t specific as to what they were researching into, but from all the reading that I’ve done and I sort of know what they’re doing research on stem cells for, and so I didn’t have any problem with that whatsoever. And all they were asking to do was basically collect the placenta – well, the umbilical cord, because it’s cord blood - once you’ve given birth, and you give a blood test and that’s it. And it’s very, very, there’s no intervention, there’s no - nobody’s harmed. There are no fetuses aborted, nothing like that, and so I didn’t have any objection to it whatsoever. I thought, “Well, you know, they’re only going to chuck it away anyway, so why not do it?” 

 

Definitely, definitely. They wanted to know before they started whether - on the first trial - whether the proteins on the surface of my tumour actually were the sort that they thought they could treat.

 

So again it was directly related to my treatment, I suppose, you know, there was possibly a direct benefit to me, yeah.

Right, well, on the first occasion when we were approached about giving blood samples and doing MRIs and things, they were looking for healthy people to take part as well. So we decided that as a couple we would take part. She was very happy to do that. She actually went further than I did. She was prepared to let them try the lumbar puncture process but, unfortunately there was a difficulty so it didn’t, ended up not happening. They did try, but she was uncomfortable so - and, again, you see, that’s evidences to the caring of the team. They tried to take a sample from her. They realised that she was in discomfort and immediately stopped it, so you know, that gives you confidence to do things going along. But so the first time I went [wife] did exactly the same tests that I did.

Yes.

 

So the clinic sent me to see the research midwives. The research midwives thought for about 10 seconds and said, “Oh well, here’s one that you’re qualified for.” And I came into the category of a slightly higher risk pregnancy because of having had IVF. And the research midwives were terribly apologetic that this would involve an extra blood test and an extra urine test every month, and a bit of going out of the way on my part, and I reassured them that I was very, very happy to do all of this. And in fact the blood tests could usually be done when I went to the antenatal clinic, so there were only a few occasions when I had to have an extra blood test.

 

Sometimes yes, sometimes no.

 

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.

 

And so on the morning I - it was an early, made an early morning appointment. I did as I usually do on a Saturday, I whipped up a cake, a rich fruit cake, whacked it in the oven and then went off to the appointment. And as I arrived, drove to the appointment, which is only about ten minutes’ drive away, I read on the paper where was I supposed to go, and of course I saw it said, “You’ve got to allow two hours for this.” So I thought, “No way is this going to be able to take me two hours”.

 

But of course I’d got my cake in the oven, so I knew couldn’t take very long and so I knew I was under pressure, and it probably would have been better if how long you’ve got to give was a bit more prominent. On the other hand, I wonder, if I’d have read that, whether I would have done it, because I thought I was going to pop along, give a blood test, answer a few questions and whip away. And if it said two hours would I still have done it? So all in all for me, being a person that rushes around doing everything, it happened to work out for the best. And at no stage did I have to wait for anything, although I did talk to one woman at the end who said to me, “How long have you been here? Because I’ve been here a long time, two and a half hours.” And I said, and I hadn’t because I’d whizzed through the whole thing, so I was in there for an hour and a half, and so I got home and got the cake out, which was fine.

So I thought I’d volunteer and I found it quite an interesting experience. It’s, I think one’s got to be well aware of the time element - I don’t mean in terms of the number of visits per se, I mean it’s twice a year - but you’ve got to be prepared to give up, you know, five hours plus to get through all the tests that are needed, and I knew that as somebody with slowly progressive MND then I was probably better placed than many to be able to cope with that.

When you go in the MRI - you know, it’s not everyone’s favourite thing to go in the tunnel - absolutely no issues. They talk to you the whole time, make you feel comfortable, explain to you what the tests are about. That is so important that you understand why they’re doing things. They’re not, you know, you’re not just there, “Well, we’re going to do this, but we’re not going to tell you why.” It’s the complete opposite. “We’re going to do this test because we want to find out the relationship between your sight and your brain” or “We’re going to do this test because we want to test why the right side of the brain is not talking to the left side of the brain”, or “why there are, why MND crosses over the right and the left.” All that sort of thing was explained to me. It was, it was very, very interesting. 

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.

If you do a Biobank, I think you need to be honest with your result, with your answers. There’s no point in doing it and then not telling the truth, because it’s a bit like statistics, you know, it’s rubbish in and rubbish out. If you’re going to do it, do it properly, and enter into it properly, so that people understand what really is going on in your family or in your body.