Luke

Age at interview: 35

Brief Outline:

Luke is part of a twin cohort study which involves study visits every four years and an annual questionnaire. He expresses caution about how the data is used, who gets to use it, and how research findings are communicated. 

Background:

No details given.

More about me...

Luke is part of a twin cohort study. He joined after seeing a documentary which mentioned the research and he contacted the study team. As part of Luke’s participation in the study, he has provided the research team with tissue, spit and blood samples. He attends study appointments every four years and completes an annual questionnaire. Luke’s twin has gone to some study appointments but Luke thinks this was mainly as “a favour” to him. It raises questions for Luke about whether enthusiasm for and willingness to give consent to a twins study is always equal.

Luke is motivated to continue participating in the cohort study because he has an interest in science. He says that when he first joined the study, he did not really understand much about the cohort study. However, as time has gone on, he has learnt more about the arrangements behind the study. Luke thinks the research team are good at providing information at a summary level. However, he has felt uncomfortable about how research findings have been presented in the media. Luke says that he has become “quite absorbed” in the study and recognises that other participants probably do not think about their participation as much.

Luke has some concerns about the cohort study he is part of. He thinks that the research team try to appeal to new and current study participants by saying that it provides a free extra health check-up, but he feels that this is a bit misleading. Luke believes that his GP would be told if the study team found anything concerning about his health though. Luke is also concerned about the issue of long-term consent and having study data shared in commercially-driven projects with limited public benefit.

Luke thinks that cohort studies can be very valuable but that they are also “vulnerable”. He expresses caution about the potential uses of data that participants might not consider or understand in much detail. He encourages researchers to be more inclusive of potential participants and the wider public when making decisions about research.

Interview conducted in 2019.

 

For Luke, trying to pinpoint exactly when he ‘joined’ a twins study raises interesting questions. He completed paperwork but highlights that the data he provides is about his past, current and future self.

When you consent to become part of the study there’s a formal consent process and one could say the moment you become part of the study is the moment where you not only provide your consent in written form but you also provide them your samples, so those are tissue samples there, some of your spit and your blood and your DNA as a consequence of those samples. So there’s a formal giving of materials, biological and otherwise and a lot of other, a lot of behavioural information. But there’s also a lot of information that you give that is about your life in all facets whether it’s to do with hospitalisations for existing conditions differences between you and, in my case me and my brother that are both social and kind of biological and the relationship between those two things. So when it is, when you become involved in a study like this you’re not just becoming involved from a kind of a zero point in time from which you move forward there’s also great work of retrospection where they are interested in everything that’s also happened to you in the past.

So it involves not just your adult self for example but your, almost your child self?

Yes and your future selves.

Luke thinks that researchers sometimes frame cohort studies as ‘health MOTs’ to appeal to participants. He cautions that this type of research shouldn’t be relied on for “health monitoring”.

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 MOT” 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.

Luke is part of a twins study and every four years he and his twin spend a day at the hospital clinic having medical tests. He describes it as “a very medical experience”.

So the four yearly visits have changed so I went in 2012 and then again in ’16 and initially it was a morning and now it’s a full day and they provide lunch and the first time we did, I can’t, I wish I could remember all the tests and, you know, there were lung function, there were tests that put, test your bone density, a DEXA scan I think it’s called and various other scans, blood, urine, spit anything that they can sequence essentially [laugh], so they took a lot of bio samples. And then there were all kinds of like base line health questionnaire stuff and including things about your twinship, so if you knew your zygosity for example, this was very important for them to know whether or not you believe yourself to be a, a monozygotic of a dizygotic twin because they, essentially they’re different genetic groups. Monozygotic twins share, on average a 100% of their genes and dizygotic twins share 50% and so the model for twin studies uses these two groups to control for variations between them if that makes sense. And, of course, they can actually do the test themselves but, you know, it’s that sort of information’s helpful and they collect some socio-demographic and socioeconomic social data. It was quite limited, a lot of it is to do with diet. They do a lot of, well like I said, before work on metabolomics and, and nutrition, area sort of personalised nutrition. And so there are a series of sort of what I would call quite clinical tests and the clinical visit is very much sort of putting you around the different stations of those tests and it can be quite fun because of course it’s you and your sibling and if, depending on how you look at it, it can be quite competitive or amusing. Also as an adult you may not spend very much time with one another ordinarily so it’s a kind of nice opportunity to just see each other.

It’s in hospital I should add that, you know, it’s in a large [city] research based hospital. You go very high up in, in the hospital and it’s a very much, it’s a clinical environment, so, and for some of the tests for example the DEXA scan requires you to strip down and put on a hospital gown. It’s a very medical experience on the whole.

Luke thinks the idea of “informed consent” is questionable when it’s uncertain how your data may be used or shared in the future.

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.

Luke is impressed with the level of feedback he gets from a twins study he is part of. He thinks this helps keep participants enrolled.

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.

Luke’s message is “one of caution” about how data might be used. He thinks researchers should also be open to participants’ feedback about what they would like done differently.

It is one of caution.

Right.

And I suppose it is one where I would ask anybody that’s thinking about being involved in a cohort or indeed is already involved in cohort is to follow what’s happening with the data and to ask yourself whether you think that that’s the best use of your data and the data of other people who have decided to get involved in this. And we are often told, “You can leave the study at any moment,” and I feel like that’s a shame, we should be told, “You don’t have to leave, you can tell us how unhappy you are and we may be able to do something about it”.

Luke would like to see a lot more involvement of participants in the design of studies.

It’s never too early to involve your participants or your future participants in what you are going to do, not what you’ve done or what you want to do but actually to involve them in the things that matters to them, to hear what they are.

Through an advisory panel like the one with you…?

I would not want that consultation and that dialogue to be reduced to a forum or a kind of round table kind of committee hosted every, you know, couple of times a year. I think that they could be much more sophisticated than that.

And, so perhaps through e-mail consultation or letters going out you mean?

We have, you know, as this group kind of has demonstrated, enormous technological capacity to improve the way in which we both design and conduct our studies and there, I think there needs to be more put into how we agree what studies we should do. And that’s something that the studies can’t do on their own. It’s something that the research councils and other funders need to think very carefully about because at the moment it’s a sort of, it’s all done through a kind of closed bidding process with expert panels and I think it could be a lot more involvement of participants and the participants who are ultimately the ones that are providing the data for this research to be done.