Yes they did although I don’t think I truly understand and I don’t think I still really understand the consequences of long term or open ended consent, and I don’t think many people do. Because, and even I don’t think they do because they don’t know what their research group are going to do in the next ten years with the data that I’ve provided or anybody else has provided. And so it’s odd isn’t it that we talk about informed consent because we assume that, those can, you know, being consented are being told what they’re being consented to do because the person doing the work knows, whereas in this case I’m not sure that’s the case. I don’t think they do always know what the future holds for them in terms of research because part of it is to do with what they get funded to do. And also because it’s a bio resource, they are mandated to share that data with researchers around the world who have, you know, declared a legitimate need or desire that data for their work and they have no, they can’t tell what that research is going to be.

Well they can guarantee, you know, they do guarantee many things, they guarantee that they’re not going to be used for commercial purposes. they’re not gonna be used for, oh gosh I can’t quite remember what the limitations are, some of them I supposed would be quite standard. Anyhow I was quite satisfied that they weren’t going to abuse my data but they couldn’t specify what it is that they were going to use my data for so you get a sort of very broad parameter, or you agree to very broad parameters.

It was just saliva samples.

And how did you feel about that?

No, it was fine. Well, you know, basically I just wanted, first of all, you know, I wanted to know how would that work; basically, what equipment you’re going to use and everything like that and then they just explain to us, This is the equipment. You can take it with yo. They wanted to collect it after a certain number of days or something, so they said, Take it with you and then we’ll come and collect it from your house and we’ll take it away I asked the question how they were going to take it because obviously we would want to know how our saliva’s going to be taken, what type of equipment they’re going to use and so that’s what they explained to us basically.

And just make sure they understand their rights, I suppose, in relation to it. That this is not required, that it’s not something they have to submit to for their own kind of-, in the same way that if you were unwell and you needed to have medication or blood tests, you know, there’s limited choice in that situation, there’s still choice but it’s, you know, that it’s in your best interests to do it. Whereas in this situation, if there’s no direct, obvious benefit from participating, I think it needs to be really clear that they don’t have to keep doing it if they don’t want to, or maybe there are ways that you can kind of be more flexible about how you approach things, to make it more comfortable for them. So, in my experience, maybe, maybe if somebody had said to me, Would you just prefer two female researchers, I maybe would have said, Ye, as a teenager, I might not of, I might of just been too embarrassed and been like, No, no, it’s fin. But giving options and choices and making sure they understand that this is not required from them, yeah.

I think this study is, you know, again this is something I’ve learned over time. I think this study is quite good at this and that they do put a lot of thought into providing information at summary level rather than-, they don’t provide an awful lot of information in terms of individual level data or findings but they do provide a lot of summary level information and news about what kinds of studies they’re doing.

And I think that they’re to be commended for that because I know that there are other less well-resourced cohorts who have to focus on the day to day management of their studies and less on the-, on that sort of dialogue or exchange of information with participants. And, and that, there may be a reason I speculate with you now is that I think that with the twin studies there is an issue about retention and I may be a little bit different to a birth cohort where you feel like you’re a, a kind of, you were born into a study and you feel a sense of loyalty to that study. With a twin study it’s slightly different, you’re affiliated because you feel that being a twin may make you well, you know, like a special kind of research subject but it’s very easy to ignore their messages, to ignore their invitations for further study or for further clinical visits. So I think the efforts that they put in to communicate what they’re doing is necessary, they need to retain their subjects.

They just may think, Why does that need to be in that particular questionnaire really, they’re asking me about a health condition or something like that, then why does this need to be requested in a sense, what’s that got to do with it?’ But it’s, I don’t know, whenever I’ve asked, whenever I’ve received questionnaires, they’ve always had this information, you see, and I think some people may feel a bit, uncomfortable having to provide something that’s not necessarily got anything to do with this, Why’s that?’

Yeah, I’d say obviously certain questions that they do ask are quite personal, you know, some people are a bit reluctant to answer those, you know.

What kind of questions would that be?

You know, for example, you know, like you were talking about people’s private lives and all that. Certain people, I’m not saying everybody, but some people are a bit reluctant to talk about their private life and everything like that, you see, so they might want it to be, you know, explained in a different way for example. What do you call it nowand then also I think with the information when it’s been given to you, I think some of the wording that’s been used on it, it’s quite, like certain questions, are quite, as I’ve said, it’s quite personal. I think also the wording on some of the questions could be a bit different. Not, I don’t mind how they’ve been worded but obviously there-, other people might just think, Oh look, well, this is quite,’ you know, that’s why they might not want to participate because it could be the way that it’s structured. The wording of the questions may not be for example, they feel comfortable answering.

Sometimes, I think what you’ve got is – if some people can’t speak the language then it’s very difficult for them to communicate. So I’m just saying for example, if they speak Urdu, Punjabi, Polish, Czech and other languages, it’s very difficult communication-wise. they’re trying to give an answer and they might – or receiving a question and they might not understand what’s been said. So, I think because I spoke English, I was able to respond to the questions, answer the questions. So, you’ve got to obviously have that understanding but I think what would work is that, for example if, if you’ve got the workers from [cohort study] who can obviously speak a language apart from English, like if they’ve got workers that can speak, you know, Urdu, Punjabi or Polish or Czech, you know, or any other type of language, it basically then gives the patient the confidence to say, Look here, I can open up, you kno. Whereas, if the English is, if they speak broken English, if English is not their strongest language, they’re going to struggle to give you a response so they might misinterpret it or something.