Richard - Interview 03

Age at interview: 43

Brief Outline: Richard was asked to take part in the UK Biobank study and decided not to. He has taken part in other medical research in the past.

Background: Richard is an NHS Manager. He is married with two children, aged 14 and 12. Ethnic background' White British

More about me...

Richard was sent a letter asking if he would take part in the UK Biobank study. This would have involved giving blood and urine samples, taking part in some other medical tests (such as weight and blood pressure), answering questions about lifestyle and medical history, and giving permission for the Biobank to link to his medical record in future. Richard saw it as a reputable project based in a good university, but decided not to take part. He was concerned that the data and samples were being collected for future long-term research use, rather than for any immediate, specific purpose that he could identify. He explained that he was suspicious of ‘Big Brother’ government collecting more information about its citizens than is really necessary. This makes him worried about how the data might be used, and how in extreme circumstances it could mis-used. It could for example be linked up with all kinds of other information held by supermarkets, schools, CCTV footage and other parts of government.

 

He accepts there is an argument to say that if you have done nothing wrong you have nothing to fear by such information being collected. He also knows (from working for a large public sector organisation) that “people’s fears about what can happen vastly exceed the ability of organisations to get their act together and to use data in certain ways.” But even if the practical risks are small, Richard still feels there is a “liberal principle of not wanting the government to interfere.” 

 

He has taken part in medical research in the past, including a study where ‘couch potatoes’ were needed to be a control group comparing their mental well-being with that of people who were very fit and active exercisers. (The study found no difference in mental state between the two groups, which interested him). He participated partly to have the benefit of some personal feedback about his own health and fitness and partly because it seemed like a valuable study. 

 

He thinks much medical research is useful and has made a difference to health and health care. He used to carry a donor card saying he would be happy for his organs to be used for research after his death. However, his views have changed over time. In particular, he feels medical research priorities and expenditure are too dominated by treatments to cure conditions and prolong life rather than improve quality of life. He is not convinced that being able to live many more years is good if more of those years are spent unwell and in pain. More research could be done into people’s values and wishes, and more money spent on supporting people who are ill and dying rather than trying to cure them.

 

Richard did not want to take part in the UK Biobank because it was not clear how the data would be used. He worried it could be misused and was also concerned about privacy.

My, probably I felt some misgiving about the nature of it, inasmuch as it’s a long-term study, without specific aims that I could identify. So it was to collect a lot of data and personal data, it would have access to my GP record, and collect a massive database on everything for whatever purpose was deemed necessary in the future. And that type of research would concern me.

 

Why?

 

I have an innate suspicion of, of the government - not that this is the government - but of databases, of CCTV. Most recently, to give an example, although this is since the research request, a database covering all children throughout the country to try and aid child protection, when most people who know anything about it would say it doesn’t and can’t. And in that instance they collect data from schools. They give parents no right to opt out of that particular database. And there seems to me to be an element of Big Brother collecting data. At the moment it is probably fair to say that the government can’t get its act together to use all the data it’s got as it may wish to, but that in the future may change. If they linked, for instance, a database developed by Biobank with my shopping in Tesco’s with whatever else is on a database, increasingly it all joins up and they can know everything about you.

 

And what would be your fears about what they might ultimately do with that?

 

That’s interesting. Because there is an argument to say, “If you haven’t committed a crime, you have nothing to worry about.” I don’t subscribe to that view. I think probably the biggest worry for the individual is a misuse of data - perhaps a misunderstanding, perhaps a mistake. Perhaps you get locked up because they have linked the wrong shop with the wrong Biobank information or whatever. Mistakes happen, data goes missing. It, you know, it may sound paranoid, but it can be misused.

Richard's reasons for not taking part were mainly a matter of principle that the government should not interfere in our lives. His wife took part but he thinks she later wished she hadn't.

So it’s partly practical issues about what might happen and partly principle?

 

Probably more principle than practical. And certainly I know from working for a large state institution that people’s fears about what can happen vastly exceed the ability of organisations to get their act together and to use data in certain ways. So I think it’s more a sort of liberal principle of not wanting the government to interfere, and, in fact, the fact that they shouldn’t know as much as they seem as if they want to.

 

Were you and your wife invited at the same time?

 

Yes.

 

Did she get an invitation?

 

Yes.

 

And did she go?

 

She did go. Interestingly, some of the views that I’m putting forward are very much shared by my wife. And at a later date she said she probably wished she hadn’t. And that’s an interesting thing about how long you consider something for before you think of the ramifications. She did go. She was somewhat, it was somewhat awkward for her because her appointment was put off to a less convenient time. But she is part of the Biobank scheme.

Richard contrasts the UK Biobank with another study which he felt was more directly useful, both for himself and for health care.

Some years ago I was involved in some research that I think it was being done at [specialist hospital]. And one of the things that appealed to me about it was their description of a control group as ‘couch potatoes’, which I was at the time. And the research was to compare physically healthy and very active exercisers, and their psychological well-being, against couch potatoes. And the result was, actually, that there was mentally no difference. So the research didn’t back up [laughs] what it was trying to find. And there are many ways they can measure the degree of couch potato physical build, fat, volume of oxygen absorbed in the lungs etc. So it was semi-invasive in the number of tests one had to go through and an exercise test, and then mental agility tests etc. and well-being tests, to see how fit the different groups were.

 

So why did you decide to go for that one?

 

Well, it had a specific aim. Biobank doesn’t. It seemed to me useful to me, inasmuch as they said that I would get the results of my tests back, so whether that was a measure of physical well-being or mental well-being. And looking at the outcome, I think it is inherently useful to know the outcome. It’s interesting to me [laughs] that the outcome of the research didn’t bear out either what the investigators thought it would or common sense tells you.

Richard believes more research should focus on improving quality of life rather than merely lengthening it. He feels this is a neglected area.

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.

Richard has stopped carrying a donor card. He thinks that the money used to fund research would be better spent helping those who are already ill and their families.

At one point I was carrying a donor card for research purposes*. My view has changed, such that I wouldn’t now, and I wouldn’t donate my body parts to research. This links to my feeling that society ought to put its money into lower-tech issues rather than higher-tech issues. So we may be better off dealing with Alzheimer’s rather than solving it - putting money into care homes, supporting families - rather than into the research which allows, for instance, stem cells to be implanted into people’s brains. It’s enormously expensive. It may be worthwhile, but there is no end to it.

 

And you said you used to carry a donor card for research. Can you pinpoint things that have made you change your view? Or is it just kind of generally over time, re-thinking, maturing?

 

Yeah, no, I can’t. I think the, the point at which I carried a card was really not being precious about my own body organs, for instance, and not believing in an afterlife, or that my organs would affect it even if I did. That hasn’t changed. But what has changed is my view of medical research and its usefulness in the wider scheme of things.

 

* FOOTNOTE' An animal rights campaign group used to produce a ‘Humane Research Donor Card’ to raise awareness of their campaign to replace animal tissue in research with human tissue. The card is no longer available.