In terms of what the researchers might have found whilst looking at my skin, yes, I would have liked them to tell me if there was anything that didn’t look healthy and also to contact my GP about it. it’s tricky because some of the things like them telling me about the study and whether or not they would give me feedback if they saw a dodgy looking mole may have happened and I may have forgotten them and they didn’t seem relevant at the time, but I sort of think you need to re-consent young adults each time you see them, if it’s every few years. I guess because you don’t know at what point they are transitioning over responsibility for being in the study or if even they understand that it is a study.

I had a really big mole on my back that was right by a bra strap and I kept catching it. And this had been going on for probably a few years at that point and I’d-, I’d basically accidentally ripped it off actually at one point and it was quite disgusting and sort of dangling off [laugh] and I’d stuck it back down and hoped it healed. But I became quite anxious about that being something dangerous and that I could’ve started a mutation off with the cells, and I was asking the researchers, you know, What do you think I should do? Should I get it cut off, should I get it removed and I remember them being quite-, well I suppose I thought it was unhelpful at the time, but they didn’t really say either way. And just kind of left it up to me about what I did with it. And yeah, I suppose that was them being neutral in their research but I remember sort of thinking-, feeling like I just wanted a bit more direction about whether it was okay or whether I should be concerned about it, and if it kept happening would something serious happen with it, mutating and sort of developing into a cancerous mole.

Well part of that, and this is true of many studies, part of the consent process is that if they do find anything unusual that would then be reported to my GP. But I’ve never been in that position and so there’s a certain amount of trust and faith that that would be the case and also perhaps, you know, whether it’s- blood pressure, there’re sort of such simple clinical endpoints or things that they monitor. Yeah, I don’t turn to my participation in the study for health monitoring and I don’t think it would be wise to. Although that is one of the things that they promise to their, you know, new recruits, that they say, We’ll provide you an MO which I’m not sure they should do that but that’s just one of their kind of one liners, you know, that they essentially provide a kind of supplementary sort of health monitoring service as part of the study.

I mean of course you will have full bloods, monitoring, you-, and reporting, I mean they’re interested in your weight loss or gain. they’re-, because of course it’s, the clinical visits are done at four yearly intervals they can provide some kind of, they can judge changes in your, well I don’t know what you’d call it, health indicators would be at its broadest. How meaningful those changes are is not something they’re providing an interpretation of.

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.

Yeah, that was the thing when they took my saliva sample, mine and my wife’s saliva sample, they said, Oh look, we’re going to take this for researc.

But it was just like you didn’t know when the results were going to come out and you didn’t get a timescale like that. It was just the results will come out and then you’ll get to know, that was about it really. I can’t remember what further was said but they said we’re going to use your results and your research towards this and then we’ll, they promote, not promote but they just send out not confirmation but it was like, this will be used but we don’t know when the results will be out or anything like that. I didn’t get, that was the vague part of it, was that I didn’t know what was going to happen afterwards and what the results would be and whether or not the results have created an accurate response of what has happened basically really.

I think, results-wise, I think that was the only thing I was a bit, because it’s been four years, I haven’t heard anything back about that so I thought it would have been nice to just say, Look from the results that you’ve provided and all that, we’ve just, this is what’s happene.

The result side I think that’s where there is a bit lacking, that you’re not getting the response regarding the results of what’s happened after or You participated in this, these are the results and this is what we found out. We just want to let you know that this is still ongoing or-. They also have that peace of mind that look, you know, they haven’t forgotten, as they say.