Biobanking

 

 

Yes, I do. There are obviously tests out there that measure perception of quality of life, which are very important. It is obviously easier to measure quantity of life and effectiveness of drugs in terms of periods of remission or length of life, over the purely qualitative aspects. The other thing that’s inherently true in research, or medical research, is that the vast majority of it is going to be on people who are ill, and a large amount of research on neurological diseases and cancer.  And to some extent that is less societal. And more research could be aimed at the values which society puts on, on life and quality of life.

 

 

Well, to give a specific example, some research has been carried out to say that if you ask the population where would they like to die, they say they would like to die at home. And if you look at where people do die, the vast majority of people die in hospital. And that sort of research, which I would regard as more societal, to look at picking up the values of society and trying to do something about them, can then be brought into practical impact by putting in measures to allow people to die at home, whether it’s Hospice at Home or training in nursing homes, or even a set of rules saying, “Please don’t admit this patient to hospital just because they’re going to die within the next 24 hours”, to find ways to meet better society’s wishes.

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.

 

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.

 

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.

 

That would be a determinant.

I don’t think I would put my name forward for drug trialling. Having said that, if I was ill then any chance is better than none at all, so I most likely would, actually. So that’s just a bit contradictory. isn’t it?

 

Yeah. I mean, I’m, I don’t - you see I believe in testing animals, which that - now that goes against the grain in the media, doesn’t it? You know, I actually think you should test animals rather than humans, and if a pig or whatever it is - pigs are meant to be very similar to us - use it. That’s what we eat anyway. Yes so...

 

Exactly. Love them to bits, and I wouldn’t hurt an animal, but I think I’d rather test something - I mean the classic is the rats, isn’t it? Maybe they are treated bad, I don’t know, but at the end of the day they’re rats [laughter]. They’re bred, you know, to be for research, the same way as the only reason there are sheep in the fields out there, and cows in the fields, is because we eat them. You can tell I’m not vegetarian [laughter].

 

Yes.

 

Yes, but if they’ve volunteered, as healthy volunteers, then that’s the chance you take, that’s the risk you take. In the same way I suppose even with what I’ve done I could have ended up with septicaemia from something, you know. I’m sure it’s not an impossibility, is it, that something could go drastically wrong, you know. However that’s the chance I’m prepared to take. But I’d be, I think partly there I actually believe in the Health Service, very much. I’d hate to lose the Health Service. I think it’s an important part of my, certainly my upbringing and it’s been there for me all the time.

 

Yeah, of course I will - as long as they’re not abused. If it’s for research, and not abused, I will back that up. Because a lot of these animals, like pigs, mice, where did we get all this medication from? Where can we get them? Because they have to do research. A couple of little mice might die, a couple of pigs might die, a couple of monkeys might die, but they’re not cruelly. A lot of people say it’s cruel. But my motto is, if I had a daughter and they said to me, “We’ve got some medication, but we’ve tested it on monkeys, or tested it on whatever animal. Would you give it a trial? It’s the only option.” As a father, what am I going to do? Test it. If it works, it works. If it doesn’t, we’ve lost nothing. And that’s my motto, “Research, research, research.” If you can’t do research in this world, it’s, well, it’s immaterial to me. I wish somebody would research on my brain. Well, they’ll do that when I’m dead anyway. But at the end of the day my motto is, you’ve just got - I can live, I might be living for the next ten years or twenty years. If I do, I’ve had a good life. If I don’t, it’s immaterial to me, you know. But it upsets me sometimes. You see things on television. They’ve got, right, you get Cancer Research, you get, what’s that other one, them nurses? Macmillan nurses. “Give this, give that”. Give it to them. You must give it to them. It’s only three quid a week. And if anybody’s listening to this, three quid a week - you think, when you go down the pub, that’s a pint. Your daughter might be dying, or your son or your wife or your mother. What’s three quid a week? Look after the animals, because without the animals you can’t get research. I always give to Cancer Research, RSPCA, PDSA. But that’s my choice. A lot of people don’t do that choice. But I give to them. I look after animals, I look after people. But my basic moral, just me morally, is research. 

Stem cell, I’d just have to remind myself, that’s normally from aborted fetuses, isn’t it?

 

 

There are other ways of harvesting it now?

 

 

I’ve heard something about that, that you can harvest your own stem cells now, I hear.

 

 

Yes, yeah, I’ve, I’ve heard about that, yes. So, so no, it’s...

 

Generally speaking I’m of the belief that a body’s a shell and the - if one wants to look at it from a spiritualist point of view - the body and the spirit, although they share the same platform for a while, after the body’s died, I mean, whether that be a baby, which is very sad, or a fetus, then there is, you know, to a point, “Why waste it?” you know. The material is very hard to come by, to a point, and it’s, it has unique properties. And, you know, I’m generally an advocate for using these things. The problem is that, if we’re looking on a worldwide level, is that the, what we do in the first and second worlds are relatively well controlled -I use the term ‘relatively’ deliberately - by good, quite strong ethical committees and information governance and governing committees. And they do the best we can do, with our current knowledge -I will put that caveat in - to balance the risk, the pain or other un-, yet unknown side effects of using this. And that’s the best we can do. We can’t do any more than that.

We can’t try and protect against things we don’t yet know about. I mean, we may look back in twenty years and say, “That was criminal, doing that.” But there again we also look back a hundred years now and say, “How did they do those kind of things?” Like the, there’s the famous one about disease. When was it? 1800 and something or another. There were two units in Vienna for birthing children, and one was run by midwives, one was run by doctors. And the mortality rate in the one run by doctors was, I think the figures are roughly right, was about 20 per cent, 25 per cent, and the one run by midwives was down around the 1 or 2 per cent. And that went on for years, I mean that went on for five or ten years. And eventually somebody worked out what it was, that it was actually contamination on the hands. Because the doctors were doing their research they had - I mean, it sounds terrible this day and age - round in the other theatre they were doing the autopsies, trying to understand why people died, and then they would come round to the mothers’ side and help with the births. It just seems so obvious now, but they didn’t know that disease was carried by what was on your hands. Because they didn’t, they thought it was either airborne, so they closed the rooms off, or it was - you know, they did, just didn’t know the mechanism for transmission.

 

 

Yes, the cholera one, yes.

 

That‘s right.

 

One of the two, wasn’t it? But it’s the same thing. Until you know. You go, “Well, that’s obvious.” But it’s only obvious in hindsight.

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.

I don’t think they understand what they’re talking about half the time. I think they make, they’re far too quick to sensationalise it and make money out of it themselves. I mean I think that’s the real problem, that people don’t understand that the motive of the media is to sell news, and so the more sensational they can make it the better it is. And half the time, I mean it’s like this business of confidentiality - it’s just nonsense. I mean if only people understand, understood how much money it’s costing the health service, they would run a mile. 

Well the media always tends to go for a sensational aspect. The shock-horror story and this was done badly or hallelujah this done fabulously. They’re not very good about portraying a moderate view on how things are actually done and I think, I suppose, because working within a health field I see medical research going on all around me in various forms I’ve got a better understanding than maybe somebody that doesn’t work in this particular field. So, you know, I think a lot of what’s written in the media is a load of bunkum.

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.

Right.

 

Yes.

 

I think the media love sensation, and they often portray things in a, in a manner which is inflammatory, I think. And of course, you know, there are lots of issues that should be made public, and I’m not suggesting for a moment that things shouldn’t be done in an ethical manner, but I do think that the media like to sort of fan the flames quite often, and I think that certainly happened in some of those cases.