A-Z

Biobanking

Attitudes to other types of medical research

We asked people what they thought about different types of research, some of which are seen as controversial. These included clinical trials of drugs, and research involving the use of animals and stem cells. Most were generally in favour of other types of research and felt it was important for making progress and for helping others or themselves. (See also ‘Reasons for taking part - personal benefit’ and ‘Reasons for taking part - helping medical science and other people'). 
 

Claire thinks people love having the chance to be altruistic and help others. She would probably...

Claire thinks people love having the chance to be altruistic and help others. She would probably...

Age at interview: 52
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Have you ever taken part in any other medical research?
 
I don’t think so, but I would always be happy to.
 
Because I think, in my experience at work and personally, people like to volunteer. I’ve been in the NHS for thirty years and people are always looking at ways of giving things. I think people love to have the opportunity to be altruistic, and we don’t make enough of that and so I guess I’m being just part of the general population. 
Even though most people were strongly supportive of medical research, some concerns or doubts were also expressed, for example about the kind of topics which are seen as a priority for funding.
 

Richard believes more research should focus on improving quality of life rather than merely...

Richard believes more research should focus on improving quality of life rather than merely...

Age at interview: 43
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT

I do have a, a second attitude to medical research, which is a bit bizarre, which is that it is not altogether a good thing, if a hundred years ago you had a life expectation of 50 years with a very short illness and then death, whereas now you might live to the age of 80 but have prolonged illness. And I don’t think that the unintended consequences of medical advance as well as social and other advances has been fully taken account of in saying, “What does the human race really want? What does it need?”  It needs to focus a lot more on quality of life, and particularly in the end-of-life years, so that we don’t all have a prolonged period of illness to look forward to. So I don’t a hundred per cent subscribe to all medical research being a good thing, particularly if it is spending enormous amounts of money prolonging end of life, as opposed to an alternative approach, which might be to think about the quality of life and the spiritual aspects.

 
Do you think that’s something we could reflect better in medical research? I mean, you know, more research projects on quality of life rather than survival, or?
 
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.
 
Tell me more what you mean about that?
 
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.
 

Tony would be interested in further studies, but he’d want to know of any risks involved, and...

Tony would be interested in further studies, but he’d want to know of any risks involved, and...

Age at interview: 33
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
People with illnesses (and sometimes healthy volunteers) can be asked to take part in clinical trials, which are a valuable way to test new treatments. This can include all kinds of treatment, for example different types of surgery or rehabilitation, but most commonly people thought of clinical trials as a way of testing new drugs. In randomised controlled clinical trials, people are randomly assigned into two or more groups: those who receive a new treatment and those who receive the current standard treatment (the control group), so the results can be compared. If no standard treatment exists, people in the control group may be given a placebo (a ‘sugar pill’ with no active ingredient, that should have no effect) to test if the treatment itself is actually working. (See our section on ‘Clinical trials’ for more information). 
 
Some people we talked to with cancer or Hepatitis C had already taken part in clinical trials, and said they would be willing to do so again. However, many people expressed concerns about placebo-controlled trials and felt if they were in a trial because they were ill they would want the new drug and would not want to risk being allocated to the placebo group. (In fact in any randomised controlled trial we do not know if the new treatment is better than the existing treatment or the placebo, and it may even be harmful – see our ‘Clinical trials’). 
 

Karen has taken part in clinical trials for cancer drugs before, but would be wary of a placebo...

Karen has taken part in clinical trials for cancer drugs before, but would be wary of a placebo...

Age at interview: 52
Sex: Female
Age at diagnosis: 40
SHOW TEXT VERSION
PRINT TRANSCRIPT
Is there any kind of medical research you don’t think you’d take part in?
 
I wouldn’t take part in any medical research that was going to give me drugs that I didn’t need, so if somebody suddenly said, ‘Oh, we’d like to give you drugs to see if you don’t get arthritis’, I wouldn’t do that. I don’t actually - although I’m, although I desperately wanted the drugs for the cancer and I’m happy to take any drugs that are deemed necessary to keep me fit and well, I don’t actually like taking drugs. So tomorrow I’m going to have the flu jab. I don’t really want to have it, but I think it’s sensible to have it, so I’ll have it.
 
So things like sort of healthy volunteers?
 
No, no.
 
You wouldn’t go for any of those?
 
No, no, I wouldn’t at all. I think your body’s too precious; I think your health is too precious. And I think too many people throw it away too easily, because I was 40 when I was, just 40 when I was diagnosed the first time, and that’s terrifically young to think that your life potentially could be over. And to make yourself ill by doing drug trials when you’re not ill in the first place I think is not something I’d do.
In the example Karen gives she is talking about healthy volunteers testing drugs to see if they can help prevent illness. This is one way in which healthy people could be involved in drug trials. For example, there have been many studies recently testing the use of low dose aspirin in otherwise healthy people to see if it helps prevent a range of conditions, including heart problems, stroke, cancer and pre-eclampsia in pregnant women. In this case, an existing, well-tested drug is being tried out for a possible new use. 
 
Another way in which healthy volunteers may become involved in drug trials is when a completely new drug is tried for the first time in human beings. This is often called a Phase 1 trial, and participants may be given a payment for taking part. Some people who had not previously been in a trial said they would probably take part if they became ill, though it would depend how ill they were and what the likely side effects might be, as well as how confident they felt that drug trials were well regulated and controlled. However, most would not be interested in taking part in a ‘first time in humans’ trial as a healthy volunteer, and several recalled the Phase 1 trial at a commercial research unit based at Northwick Park Hospital in 2006 when 6 healthy volunteers became extremely ill. (A copy of the Inquiry Report of this incident can be downloaded from the National Archives ‘Expert group on Phase One Clinical Trials’).
 

Because drug trials are tightly controlled, Jennifer says she would take part in one. She thinks...

Text only
Read below

Because drug trials are tightly controlled, Jennifer says she would take part in one. She thinks...

Age at interview: 62
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
And just picking up on one thing you said that research isn’t going to do you any harm. I mean, maybe with drug trials there is potentially a risk of side effects.

Oh yes. Yes, that’s different.

How would you feel if you were asked? I mean, say you get to a point where you might need medication for high blood pressure, would you be willing to take part in a clinical trial of medication?

Yeah, I probably would, actually, yes. But, what happened at Northwick Park* is, well, it’s very rare, isn’t it? And I know things are controlled pretty closely generally, so yes, I probably would.

Yes, Northwick Park was the first time that drug had been tried on human beings.

Yes, yes. And of course they were just healthy volunteers, weren’t they? They weren’t even people who needed whatever - I don’t even know what it was for.

No, which is not the situation that those people would find themselves in when they’re asked. And would you have any worries about a placebo-controlled trial, where you don’t know if you’re getting the drug or not?

I suppose it would depend how serious the condition was. [laughter] You know, say it was for cancer, and the new drug might be potentially life-saving, I’m not sure I’d want to run the risk of having the placebo. But I suppose at the other end of the spectrum if it was for something fairly minor, yes, it wouldn’t bother me.

*FOOTNOTE: Jennifer is referring to a Phase 1 trial at a commercial research unit based at Northwick Park Hospital in 2006 when several healthy volunteers became extremely ill. Early phase studies are carried out precisely because we need to find out about possible risks and side effects before giving the treatment more widely.
 

Although she is not sure about it, Chris thinks she might take part in a drug trial if she was ill.

Although she is not sure about it, Chris thinks she might take part in a drug trial if she was ill.

Age at interview: 57
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
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?
 
Well, I think they’re two completely different scenarios, really. If you’re a healthy volunteer, volunteering for, to take drugs that haven’t been tested on people before.
 
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...
 
And that’s as an animal owner, cat lover?
 
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].
 
[laughter]. Yeah, I mean I suppose there comes a point where you do have to test in humans for the first time—
 
Yes.
 
--which is what happened to those people at Northwick Park*, that it was the first time it had been tried in humans, because at some point you’ve got to…
 
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.
 
 
*FOOTNOTE' The interviewer is referring to a Phase 1 trial at a commercial research unit based at Northwick Park Hospital in 2006 when several healthy volunteers became extremely ill. Early phase studies are carried out precisely because we need to find out about possible risks and side effects before giving the treatment more widely.
As Jennifer pointed out, it is rare even in Phase 1 trials for serious side effects to develop. Before any drug is tested in humans it will have been through a lot of safety testing, including studies in animals. The majority of people we talked to said they thought animals should be used in research because there was a lot to be gained from it for both human and animal medicine. However, they often stressed that researchers should take care to treat animals respectfully, and for many it was a ‘necessary evil’, which should be kept to a minimum. (For example testing beauty products on animals was unacceptable to everyone we talked to). 
 

Louise's views about animal research have changed as she has got older. She used to be against it...

Text only
Read below

Louise's views about animal research have changed as she has got older. She used to be against it...

Age at interview: 44
Sex: Male
HIDE TEXT
PRINT TRANSCRIPT
My views on animal research have changed as I’ve grown older. When I was younger, I was very much against animal research, but now I’m so grateful for it, because I know with my own children, certainly my eldest child may not have survived her early days, if it hadn’t been for the development of medical interventions that had come about through animal research. She’s fine now, perfectly normal, healthy, teenager. But she was born with a life-threatening condition and needed surgery and intensive care and a lot of help. And I can remember asking one of the surgeons how they developed the skills and the technology to operate on such a tiny baby, and he said, “Well, the veterinary hospital is just across the road.” And I thought, “That’s it, really.” And it’s only when you’re faced with that reality that you realise, “Actually, this is very, very important.” And another family member has Parkinson’s, and he’s desperate for a cure. And a lot of the research for the cures for something like Parkinson’s will come through animal testing. Certainly all the oncology drugs - you do not want to be testing out those on first-in-humans.
 
And so a lot of my younger views were born out of naivety, really, an ideal naivety. I tend to qualify it that I’m not happy about animal research for things that we can live without, such as make-up and shampoo. And once something has been established as doing the job perfectly well, such as make-up or shampoo, what further testing do you need? But developments in medicine are different. And I work with enough people in this field to know that the people who do - although I’m not involved in any kind of animal research at all - but people who working in that area are not involved in it out of any kind of personal sadistic gratification. And a lot of them, I’m quite sure, are quite caring and doting on their own pets, and caring and doting on the animals in their professional care. The photos of dogs chain-smoking, again - well, I don’t smoke, so part of me thinks, “Why are we testing on animals for something that you shouldn’t be doing anyway?” But that question is something we should be putting to people who smoke. And the fact is, the fact that those animals were put through that meant that scientists were able to develop interventions to help develop cures for cardiovascular diseases and lung cancers that were brought on as a result of smoking.
 

Even as an animal lover, Andrew supports using animals in research as long as it is done carefully.

Even as an animal lover, Andrew supports using animals in research as long as it is done carefully.

Age at interview: 54
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
And even as an animal lover, you’d support the use of animals in research then?
 
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. 
There were varying levels of concern depending on the type of animal involved, for example rats compared to primates. 
 

Ruth says she would take medication that was developed using animal testing. However, she is...

Ruth says she would take medication that was developed using animal testing. However, she is...

SHOW TEXT VERSION
PRINT TRANSCRIPT
I’d like to think of myself as a person who wouldn’t want to cause any, any undue suffering to another person or animal …
 
...but without the use of animal testing there are a lot of drugs that would never have been developed and that save hundreds of thousands of lives and I would be the first one in the queue if I developed one of these conditions and so, you know, I’d want to take the benefit of having had that research so it would be a little bit hypocritical of me to say, “No, I, I don’t believe in animal testing”. There is some, I think there’s a level of animal testing, I think, you know, I do, I find it much more uncomfortable with primates them testing with primates, I have to say because I, you know, they’re so much nearer us in kinship that say rabbits and rats. Than, and it just, when you, when you see it on television, on documentaries and things like that you go, “Ooh, I’m not sure if I yeah, really like the idea of cutting into chimps’ brain.” But, again, if it was, you know, if they develop Alzheimer’s drugs from doing that, you know, helped hundreds of thousands of people then again I’d be the first one in the queue and my, again my moral avenues of that would go out of the window.
Some people were more actively pro-animal research than the others. They felt animal rights campaigners exaggerated the detrimental effects of such research.
 

Julie thinks animal research saves lives. She gets angry with animal rights protestors who use...

Julie thinks animal research saves lives. She gets angry with animal rights protestors who use...

Age at interview: 45
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I’m one of those people who actually went on a demonstration in support of the building of a new animal research lab, and I get very angry with these very emotional anti-animal research protesters, who use out-of-date pictures and out-of-date material to protest against animal research. And I believe those animal researchers who say that it’s only with the greatest reluctance that they use animals to research something, invasive research on animals, but of course animal research also saves animal lives. So I do have a pro-research stance, and I’m aware of that. I also feel the same way about stem cell research and embryo research, and in fact the, the eggs that we couldn’t use for IVF our self we did actually offer those for research purposes. Because where does life start? I’m not sure - I’m not sure I can answer that question in any meaningful way. But can research on early-stage embryos help medical advances? Yes it can. That’s more important.
Others were against animal research, but thought it would be silly not to take drugs tested on animals that could cure illnesses. This highlighted the complexity of the issue of animal research. 
 

Shelley doesn't really agree with animal research, but says you have to weigh up the pros and...

Text only
Read below

Shelley doesn't really agree with animal research, but says you have to weigh up the pros and...

Age at interview: 37
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
And you said you weren’t that keen on animal testing?
 
Mm.
 
Do you have strong views about that, or is it just one of those ‘necessary evil’ kind of things?
 
No, I do. I’m a vegetarian, so I obviously don’t eat animals or fish, so I wouldn’t want to see - and I do actively make sure that I’m not buying products, you know, makeup and things like that, that are tested on animals. Yes, so it’s not just a ‘because it’s trendy’ kind of thing. But, no I wouldn’t want to be advocating that, or supporting that by perhaps doing studies that would run alongside that. But then it’s very difficult. Lots of medications are tested on animals.
 
Well, that’s the difficulty, isn’t it?
 
Mm.
 
I mean, in a way it’s now quite easy to sort of find products that you can be sure haven’t been tested on animals.
 
Mm.
 
It’s quite difficult to find drugs that haven’t been tested on animals, I guess, but. –
 
Yeah. And I think there is again the risk versus benefit that has to be - that just sounds like I’m contradicting myself. It’s a can of worms, isn’t it?
 
It is. And I don’t think many people have the answer, really.
 
No.
 
I think most people feel quite mixed up about it, and unsure where to draw the line.  
 
Yeah. It would be difficult to say that if someone’s got an illness that can be cured by a medication that’s been tested in part on an animal, to not take that would seem ridiculous. But then you’ve got to look at both sides of it, haven’t you, and think that’s the risk and benefit, isn’t it?
Another form of research which has caused some controversy is stem cell research, as Julie mentions. Stem cells are important because they have the ability to become different cell types, and scientists are working on developing ways to use stem cells to repair damaged organs or tissues. It is anticipated this could lead to treatment for many conditions such as Parkinson’s disease and Alzheimer’s. Scientists also say that by studying stem cells they will learn more about how cells work and can use this knowledge for drugs testing and development. The University of Edinburgh and the Medical Research Council also offer useful information about stem cell research (see 'Resources' section).
 
Stem cell research may involve cells taken from adults and children (for example from bone marrow or skin), from embryos donated by couples undergoing IVF, from umbilical cord blood, the placenta or aborted fetuses. The controversies surrounding stem cell research were reflected in what the people we spoke to said.
 
Some thought it was worthwhile and were interested to see what contribution it may make in the future. Others thought there were moral issues that needed to be resolved. 
 

Colin believes the body is ‘just a shell’ and that stem cells from fetuses should be used in...

Colin believes the body is ‘just a shell’ and that stem cells from fetuses should be used in...

Age at interview: 49
Sex: Male
Age at diagnosis: 17
SHOW TEXT VERSION
PRINT TRANSCRIPT
Stem cell, I’d just have to remind myself, that’s normally from aborted fetuses, isn’t it?
 
It has been, yeah. There are other ways of harvesting cells.
 
There are other ways of harvesting it now?
 
Yes.
 
I’ve heard something about that, that you can harvest your own stem cells now, I hear.
 
Yeah, and I think they can take it from cord, umbilical cord blood.
 
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.
 
No. A bit like the cholera kind of outbreaks --
 
Yes, the cholera one, yes.
 
-- and tracing it to the well and --
 
That‘s right.
 
-- and all of that. Or was it typhoid? I can’t remember. Yes.
 
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.
 

Gareth draws a moral distinction between animal research, which he supports, and stem cell...

Gareth draws a moral distinction between animal research, which he supports, and stem cell...

Age at interview: 49
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
Not all stem cell research involves embryos or fetuses, and alternative ways of collecting stem cells can avoid many of the moral difficulties.
 

Donating cord blood, which Ruth sees as a by-product of having her baby, is ‘a much kinder way’...

Donating cord blood, which Ruth sees as a by-product of having her baby, is ‘a much kinder way’...

SHOW TEXT VERSION
PRINT TRANSCRIPT
What are your wider thoughts about medical research?
 
It’s very different, difficult actually. I have to say probably my view on that particular issue has changed since I’ve had a baby. I think before it probably didn’t bother me that stem cells were maybe used from aborted or terminated fetuses. But I suppose, I don’t know I’d, I think part of becoming a mother you sort of develop the, there are certain things you just wouldn’t consider and I do certainly understand the benefit and of them being able to have stem cells to research on but, you know, if they can get them and they’re as good a quality and good for, as good for research as from, using from aborted fetuses then this is much, much more a kinder ethical way of doing it rather than, and so yes, I’d be more keen to push that area.
 
You can give live stem cell transplants as well. I’ve read, I’ve read on that. But that involves a lot more work on your part [laughs]. So you’d have to seriously think about what you would have to do for that.
 
They take them from bone marrow?
 
Yes.
 
Or …
 
Yeah.
 
Which is quite invasive. So I’d think twice about that whereas giving cord blood, as I said, it was a by-product of having a baby and therefore it wasn’t anything I had to do as such.
 
It was very, very easy.
Jean also pointed out that stem cell research could reduce the need for us to use animal testing.
 

Jean supports animal research as a necessary evil, and also stem cell research, which may reduce...

Jean supports animal research as a necessary evil, and also stem cell research, which may reduce...

Age at interview: 56
Sex: Female
Age at diagnosis: 50
SHOW TEXT VERSION
PRINT TRANSCRIPT
And what about things like animal research and stem cell research? Do you have views about those, or views that you want to share?
 
I think they are a necessary evil, in the sense that I don’t see how you can progress, and there are countless examples of life saving drugs that occurred, that were developed because of some animal testing. I think it should be as minimal as possible, but you’ve got to get models of the disease in order to be able to understand what’s happening, and you can’t do that with human beings, and it’s got to go back down, whether it’s a fruit fly or a zebra fish or a mouse it’s, it is a necessary evil.
 
And stem cells I’ve always felt that even with embryonic stem cell research that it is an important tool. I think the regulation’s got to be phenomenally tight, and I think what is great is that, now they’re able to develop the equivalent stem cell production from adult skin cells, is a huge leap forward and gets rid of a lot of the ethical dilemmas, providing they really are going to produce what the researchers hope. And it looks as if it is going to go that way, and actually you should be able to then have in a cell culture cells which are going to develop into Motor Neurone Disease because they’re coming from people who are affected by the various genetic defects. So it’s a great step forward, and one would hope that one would see quite a lot coming from that. And that in turn might reduce the amount of animal use in the future. So we’d all like in an ideal world that you don’t have to use anything from any animals at whatever stage in the animal hierarchy, but if we are going to get anywhere to improve conditions for people with the disease, and actually get some effective treatment, then I think one’s got to accept that that sort of research has to carry on.
We also asked people what their thoughts were on how the media affect research. Many said that the media favour dramatic or sensational stories and often misrepresent research findings. 
 

David believes the media’s main motivation is to profit from news so they present sensationalised...

David believes the media’s main motivation is to profit from news so they present sensationalised...

Age at interview: 58
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
What do you think about the way that the media presents things like that, those sort of issues about…?
 
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. 
 

Louise gives an example of how the media often misrepresent research findings.

Text only
Read below

Louise gives an example of how the media often misrepresent research findings.

Age at interview: 44
Sex: Male
HIDE TEXT
PRINT TRANSCRIPT
The media really annoys me [laughs]. I don’t know what we can do about it. I read a lot of Ben Goldacre*. And it’s a bit like the internet, isn’t it? And it’s not just about medical research. It’s about every flipping subject that the media touches. There will be some things, and I mean there’ve been some stories in the media that I’ve had an insight into, either professionally or just for whatever reason, and I’ve just, “That just isn’t the case at all”. How they get away with the misrepresentation? So, sometimes I wonder should it be regulated? But, any time a politician puts his head above the parapet and says they’re going to start regulating the media that’s their job gone, basically. So, one of the things that we try to do in research is try to be completely honest and up-front with everyone, and that’s a requirement of UK law. And that’s good. And the media can be a force for good as well, you know. Whistle-blowing is a force for good.
 
But there’s so much distortion in the media. A good example would be I read this article that said, “Women with slim thighs are more at risk of cardiovascular disease and heart attacks than women with fat thighs.” I was thinking, “Okay, what are they talking about here?” And what it was that they were talking about - but they didn’t explain this in the article, I had to really think about, “How did they get this? Because that contradicts my clinical understanding of the risks associated with obesity.” But what they were misrepresented - I don’t know if the person who was writing the article had misinterpreted it or misunderstood - was the body weight distribution thing. A lot of women tend to carry their weight on their hips but have relatively slim abdomens and waists, and that’s a lower risk factor for a cardiovascular disease. Whereas a few people who have incredibly slim legs, but carry all the weight around their middles are at a much higher risk of cardiovascular disease, diabetes, because all the obesity is centrally located. But they’ve got beautifully slim legs. And that’s what they were referring to, but that was not explained. The headline was, “Women with slim legs at greater risk of--.” You know, so it’s a perfect - you know.
 
* FOOTNOTE' Ben Goldacre is a doctor and broadcaster who writes about the way science gets misrepresented - see http'//www.badscience.net/
 

Ruth thinks the media always sensationalise stories.

Ruth thinks the media always sensationalise stories.

SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
 

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

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

Age at interview: 33
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
People felt that the media should present information more ethically, especially because they have the power to influence people’s views. Everyone felt it was important to expose cases such as the pathologist at Alder Hey children’s hospital who had been retaining organs without consent after post mortems in the 1980s and 1990s. But some people worried that the reporting could be inflammatory and cause unnecessary damage. 
 

Shelley explains that as the media often don't put stories into context, they can have a...

Text only
Read below

Shelley explains that as the media often don't put stories into context, they can have a...

Age at interview: 37
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
Do you have any views about how the media kind of represents medical research?
 
Well, I think it’s like anything that they represent. I think the Internet is a wonderful thing, but you can trawl an Internet site and find every side of a fifty pence piece’s opinion on it. I think that those sorts of thing get blown out of all proportion, mostly. They don’t get put into context. They don’t, generally don’t get put into context. And they’ll do it as a headline a lot of the time. And I think, as we were saying before, I think then it sort of can tar a hospital or a certain section of a hospital with the same brush and it can put them back a step, I think. And you think all of the good work that everyone’s done, and then perhaps one individual might have jeopardised all of that. And again that, I’m sure that affected their funding and any sponsorship, any sort of charity fundraising that they do. But, yeah, I think it’s like anything that you hear on the news. I think you have to sort of weigh up your own opinion and think, “OK.” And if you came across the institute that they were then perhaps talking about, wherever it is, you would have to take it on its own merit of what you see. I’m a firm believer in thinking you say as you see and as you find. And, yeah, I think a lot of those are done for headlines.
 

Jean thinks the media sometimes like to ‘fan the flames’ in the way they report problems with...

Jean thinks the media sometimes like to ‘fan the flames’ in the way they report problems with...

Age at interview: 56
Sex: Female
Age at diagnosis: 50
SHOW TEXT VERSION
PRINT TRANSCRIPT
One thing was about media presentations--
 
Right.
 
--of research, and I mean the Alder Hey case, Northwick Park* and so on.
 
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.
 
*FOOTNOTE' This refers to two cases which were widely reported in the media. In the Alder Hey case, it was discovered 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. The second case involved a Phase 1 trial at a commercial research unit based at Northwick Park Hospital in 2006 when several healthy volunteers became extremely ill. 
However, some felt that the media can act as a force for good as they raise awareness about illnesses. 
 

Paul describes the media as a “necessary evil”. He thinks it is an important force for...

Paul describes the media as a “necessary evil”. He thinks it is an important force for...

Age at interview: 63
Sex: Male
Age at diagnosis: 57
SHOW TEXT VERSION
PRINT TRANSCRIPT
I think the media is the media. I’ve been in my local paper numerous times and as much as I’m pleased that they’re, it is making people aware of MND, I cannot help but almost tear my hair out that they seek their sensational headline. But, having said that, then I’m only too pleased for the amount of people that say, “Oh, I see you in the paper. MND, I never knew you had that. What’s that about?” And I’m able to have an in-depth conversation. So it’s vital that the awareness is stepped up. It’s something which sadly a disease which claims more and more lives, so it’s on the increase, which is factual, and it needs to be addressed that that is happening, and the reasons for that, and what the intentions to stop that rise are.
 
And I know that a small proportion of that is that people live longer, so obviously more people are able to contract an illness. So I can see that side. But it is something, especially in younger people, where at this moment in time it’s still predominantly a disease in males between forty and sixty but, nevertheless, there is more and more younger men and sometimes women contracting it. And I think the awareness level needs to be constantly sought to be kept up.
 
And what about the media’s portrayal of medical research generally? Same problem?
 
They, the media is, in brackets, a necessary evil. You need to keep people informed, but not always in the ways in which we are informed, and take away the media and you lose a lot of people and their awareness. So I’m saying really that we need the media. We need to try and have as much as possible put into the media about all illnesses, and what is happening in this field. So we need less secrecy. We need a more open government, which will say, “We are going to do this”, and be seen to be doing it. I’m obviously talking about stem cell research and other - and that is really where we stand, I think.
Chris noted that she hardly ever sees positive stories about research in the local media and would like to see more.

Last reviewed February 2016.
Last updated February 2016.
donate
Previous Page
Next Page