Clinical Trials

Reasons for wanting to take part - helping medical science

People agreed to take part in clinical trials for a range of reasons. Here we look mainly at how people hoped they would help medical science and other people. (See also ‘Reasons for wanting to take part - personal benefit’).

Some people were motivated mainly by a general wish to support medical science and improve knowledge. This included some people who worked in research in one way or another, but also people with no specific research background.
Several people felt so strongly about the need for research that they had gone out of their way to find a trial and get themselves referred elsewhere. Some thought it should be the right of all patients to take part in research and to have more information about what was available. (See ‘Difficulties finding a trial to join’ and ‘Public awareness and involvement’).
 
The idea of improving care and making life better for other people in future was a common motivation for taking part, either as the main reason or as an extra benefit. This could help people feel something positive was coming out of an otherwise distressing illness. Sometimes people were thinking about helping other patients generally, and sometimes their own family or friends.
In trials involving genetic research there may be a very direct benefit for your own family, as Julian pointed out.
Sometimes people who had joined a trial hoping it would benefit them personally had been disappointed, but were glad it might still have helped other people, even if this was not one of their reasons for taking part originally.
A few people talked specifically about helping out doctors and researchers.
Others talked about a general moral or social duty. For example Amanda (above) described it as a ‘social contract’, a responsibility to others in society. The phrase ‘giving something back’ summed this up for some people, in gratitude for care received or a longer life in some cases. This included the idea of repaying a debt to others who had volunteered in the past, or a debt to the NHS as an institution.
Tony mentions hearing that some volunteers in clinical trials have had “some very, very nasty problems.” Memories were still fresh in people’s minds of one particular Phase 1 trial at a commercial research unit at Northwick Park Hospital in 2006 when 6 healthy volunteers became extremely ill. This caused a lot of reflection on the balance of personal risk, personal benefit, and benefit to others. A copy of the Inquiry Report of this incident can be downloaded from the Department of Health website.
 
Understandably there were limits to how far people were willing to go to help others. Some said they would not want to be in a placebo-controlled trial where they might not get a treatment they felt they might benefit from. Others said it would depend how invasive or risky the treatments were, and therefore whether there were any negative consequences. (See also ‘Side effects and queries’, ‘Feelings about being in a placebo-controlled trial’, ‘Deciding not to take part’ and ‘Attitudes to taking part in another trial’).
Like Rose and Rosamund, a number of people said it was easier to take part if they could see few negative consequences for themselves, or there was little difference between the treatments involved in the trial they were offered. Comments included ‘I had nothing to lose’, ‘why not?’ or ‘it wasn’t really a huge decision’.
Deciding whether something is too risky or invasive is a matter of personal choice and perception, however. For example, several people thought they’d be worried about being in a trial where you would be allocated to have surgery or not to have surgery. This struck people as much more invasive than a drug trial or a screening trial. However, Alex said surgery did not seem invasive to him. This may have been partly because he had a slight preference to have surgery anyway.
Some people commented that it is perhaps easier to take an altruistic, or unselfish, approach to helping medical science if you are not seriously ill. For a seriously ill person, the highest priority may be personal benefit and survival. (See also ‘Deciding not to take part’). On the other hand, people facing life-threatening illness may also feel they have nothing to lose by taking part and may help others who come after them.
In another part of her interview, Joanna commented that people with terminal illnesshave to be jolly altruistic at one level, or pretty desperate, to go in for certain sorts of trials.’ (See also ‘Reasons for taking part – personal benefit’).

Last reviewed July 2015.

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