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 interferer.”

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 wellbeing 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.