Table 2 Altruism expressed by acceptors and decliners

[On altruism] My reaction was if this is going to help other people who’ve got cancer I’m happy to do that, my primary thought. I think it depends on one’s personality and character as to would view in other people but I really like to do that so my main thing wasn’t actually of me, it was helping other people because it was such a shock when I found out I’d got it [breast cancer]. It was so shocking. I had no idea, not a smoker, not a drinker or anything. I was just so shocked and I thought, ‘Gosh if any information they can glean from me is going to help people’.

[On randomisation] …obviously because of them randomising it, it’s neutral, isn’t it in a way. Whereas if one makes the choice people might always go for a certain option which then makes it a bit more complicated… I presume it’s [randomisation] giving more of a balanced view of what treatments are administered so that you can get a clearer picture of what the benefits are and facts and things like that.

Trial acceptor, full understanding of randomisation (participant 7)

[On altruism] I wasn’t thinking of it so much for myself [potential trial benefits] but I think any diagnosis of a major illness changes your outlook anyway and it is such a life-changing thing that anything that I felt I could do to contribute to things being better for anyone in the future I just thought it was a good opportunity to do that and it wasn’t anything that was going to jeopardise my treatment or any outcome for me in any way but at least I thought it wouldn’t.

[On randomisation] …the computer would choose which option and it was because that’s the fairest way to do the research so it’s not sort of weighted by any other considerations..

Trial acceptor, full understanding of randomisation (participant 8)

[On altruism] For me, initially taking part in trials, it was simply that I worked in clinical trials and obviously working in it, it’s something I believe in and it was something I wanted to help with so for me that was why I wanted to be involved in some of them.

[On randomisation] [Researchers used randomisation] So that the conclusions that you draw at the end of it are not influenced by any preconceived ideas from the knowledge of which streams you are randomised into.

Trial decliner, full understanding of randomisation (participant 25)

[On altruism] Well to be honest I didn’t mind because I thought if it helps other people that I didn’t mind and I thought I agreed to take part in another study where they were taking my blood as well and stuff.

[On randomisation] I was aware that the computer, this is how I was made to think it was whether it was right or wrong, that the computer would decide on my surgery. And I was kind of like ooh how… it doesn’t know me, do you know what I mean? Obviously, in retrospect, thinking about it all the relevant information would have been inputted into that computer, I know that now, but at the time it was no, it’s not a person. […] it wasn’t explained to me if I could disagree with the computer.

Trial decliner, did not fully understand randomisation (participant 22)