Richard
Richard was asked to take part in a biobanking study and decided not to. He has taken part in other medical research in the past.
Richard is an NHS Manager. He is married with two children, aged 14 and 12. His ethnic background is White British
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Richard was sent a letter asking if he would take part in a biobanking 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 biobanking study 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 misused. 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 the 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.
Interview conducted in 2009.
Richard feels medical research should focus more on quality of life rather than treatments to prolong life if those years are spent unwell and in pain.
Richard feels medical research should focus more on quality of life rather than treatments to prolong life if those years are spent unwell and in pain.
Most medical research I think is extremely valuable. And most of it that I can see has a distinct trait of saying, “Is this better? Or is that better?” and a randomised control trial to test the two. And that seems to me to be innately useful. It does result in advances in medicine, and it results in better use of money that is spent by taking a better course rather than a worse course.
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 100% 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.
Richard chose not to take part in a biobanking study. Whilst he was mostly happy with his decision, he doesn’t want to dissuade others from making their own choices.
Richard chose not to take part in a biobanking study. Whilst he was mostly happy with his decision, he doesn’t want to dissuade others from making their own choices.
Did you feel at all guilty or have any second thoughts about saying, “No”?
Yes and no. Part of me thinks, “Yes, I am able to and should take part”. However, the cost of one individual in what is actually a population study would be miniscule. So I haven’t gone out with a flag telling other people not to take part.