Table 4 Quotes to illustrate the theme “I don’t remember much, and I don’t understand everything, but that’s OK”.

From: Exploring broad consent in the context of the 100,000 Genomes Project: a mixed methods study

1I did read all of the stuff at the time, and I can’t really remember what it says, but I’m not too concerned […] everything that I’ve read about what you guys are doing, there isn’t anything that really worries me. (P6 rare disease parent)
2I presume it’ll [data] be put in, in trials or something. I don’t know. I mean I know it’s […] anonymised and everything […] I’ll leave it to the researchers to use as they want. I’ll leave it to them. (P3 rare disease patient)
3I think it’s all really quite straightforward and explained very well, so quite a lot of documents; you know literature that’s come with it, so it’s good.” (P6 rare disease parent)
4Such brilliant stuff is going to come from it, that you just suck it up almost. (P13 rare disease parent)
5I was a bit like, it doesn’t matter what you want me to do, I’ll do it anyway, but she was very much like, well let’s just talk about it, and let’s take time, and she did spend time with me going through it. And at the time, I was a bit, oh you don’t have to, it’s fine, I’ll just sign it anyway, and she was no, I want to talk to you about it and make sure you understand it. So, yeah, it seemed fairly straightforward. (P12 cancer)
6They’re not going to be ringing up my insurance companies and things like that. (P03 rare disease patient)
7Everything that I’ve read about what you guys are doing, there isn’t anything that really worries me. (P06 rare disease parent)
8You’ve had so many surveys come through and you’ve probably spoken to numerous different people, so you get a feeling and I think you’ve got to trust that. (P10 rare disease parent)
9The NHS have done nothing but brilliant stuff for us. (P12 cancer)
10They kept saying that his, he’ll just be a number, he won’t be, nobody will be able to identify him, not that I’m worried. (P19 rare disease parent)
11I think they talked about something that it can be kept for a while and then used again for something else, if something happens later on and there are new developments, they might go back to it. (P12 cancer)
12Most people would think they’ve got a letter saying they didn’t find anything in me. And they didn’t find I was a carrier, so I naturally presumed that they’d looked into everything, I’m fine. (P24 rare disease patient)