Jade – Cohort studies

Jade was part of a twin birth cohort study. She stopped taking part in the study at age 12 but cannot remember why or how this was communicated to the research team. She is considering rejoining the study.

Jade was part of a birth cohort study which looks at twins and their development across the life course. She joined the study in 1994 when her mum was approached by a research midwife in the hospital. She is unsure whether her participation started once she was born or at a later stage. Jade can remember the cohort study’s logo which was printed on pencil cases and hoodies. She thinks these free gifts were a good incentive to continue participating in the study as a child. Jade continued participating in the study until she was about 12. Jade is unsure why she and her twin stopped participating but thinks it may have been because they found some questions and tests intrusive.

As Jade started participating when she was a baby, her parents were responsible for filling in surveys about her development. When she was around four years old, she started to complete the surveys herself and she took part in logic tests. Jade remembers questions about her family life, school life, personality, and general health. She thinks she completed these surveys and tests yearly. Jade has not met any of the other twins that are taking part in the cohort study. She remembers finding it strange that she and her twin had to sit separately to answer the questions and tests in the study. She understands now that this is to prevent them from copying each other, but at the time it was “different to what we were used to” and felt very “formal”.

Jade has recently contacted the research team about taking part in the study again but wants to make sure her sister is happy to do this before re-enrolling. Jade wants to rejoin the study because she thinks it would be “nice to be part of something bigger”, and to help answer some undecided questions about “nature” and genetics versus “nurture” and learned behaviours. Jade has asked the research team if she can look at her data, but they said it was not possible because of how it has been processed. However, the research team sent her a link to the questionnaires that participants completed over the years which Jade found interesting. She trusts that the research team have managed and stored her data appropriately.

Jade encourages others to take part in cohort studies if they are able to do so, as this kind of research can only be successful if people are willing to take part. Jade encourages parents of twins to explain to their children what these studies are for and why they are taking part. She feels that researchers working with children should use age-appropriate materials to help them understand why research is important.

Interview conducted in 2019.

When trying to find out about re-joining a twins study, Jade recognised the logo on the study team’s website. She was able to easily contact the research team and they responded quickly to her request.

Age at interview 25

Gender Female

Like as soon as I found the website more recently, I recognised it and that’s how I knew it was the same thing. I mean that probably seems obvious to you, but I didn’t know much about twins studies or how many there were. I don’t think there’s actually that many big ones. But yeah that’s how I kind of knew it was the same thing. I just remember these glaringly orange kind of t-shirts I think it was, something like that.

And you’ve said you’re interested in re-enrolling. Can you tell me about that decision and how you’re approaching it at the moment?

Hm. So I emailed [twins study] and I said, asked-, I basically asked them for the data they had on us. So I asked them when we were enrolled and why we stopped doing it, and whether we could actually have access to the data. And they responded really quickly, and they said that we stopped because we didn’t want to take part. We did it for about 12 years. And they couldn’t give me the data because of the way it had been inputted, it wouldn’t actually be meaningful cos it wasn’t as if it was a paper survey with the answers written on, it had all been converted into numerical values that would have no meaning to me now. However, the research team sent me a link to the questionnaires that participants completed over the years which was interesting. But they were quite open about the idea of us re-joining it.

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Jade took part in a twins study from a young age. She thinks it’s important to check that a child is happy to continue as they grow older and are able to understand more.

Age at interview 25

Gender Female

I think it’s interesting to take part in a study before you can consent to do so, like meaningfully. I don’t think it’s something I’d ever be really annoyed about because there’d be no other way to get this data unless you started collecting data from children at the age where they can give informed consent. I don’t know when that would be but it definitely wouldn’t be at their age that we started. I guess the benefits of the study outweigh that risk that some people might actually be taking part and not want to. And I suppose there’s what they could do is what we did which is stop when you don’t want to anymore, which is the fairest way to do it I think. So I think that’s potentially an issue but not one that I think is a problem, or not one that I think they did anything wrong.

I guess because we weren’t obviously familiar about why they did these studies. I don’t know if our parents actually told us about the study or asked us if we wanted to take part. I think it would have been-, it would be good if they did and they may well have done, I don’t know. But I’m sure at that age we didn’t have a concept of why we were doing the study. So to be asked to do all these things probably did seem like a bit of an intrusion.

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Jade remembers completing tests once a year for a twins study and filling in surveys which they did at home. Her parents also filled in questionnaires.

Age at interview 25

Gender Female

And I think, I think they were every year.

They weren’t really regular, but I think they were about every year.

I remember them giving you little tests. Like, not maths questions, but kind of like logic questions, I guess they were designed just to test your development and stuff like that. So, it-, like, stuff like they’d have a picture of two triangles and a square, and they’d say like, Match up a pai. And they’d also-, I remember like surveys, lots of questions about various things, all kinds of things related to home, education, and I think my parents had to do more of those than we did probably, about all kinds of things like family life, school life, personality, behaviour, health, all of those topics you’d kind of expect from twins studies.

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Jade feels confident that the researchers in a twins study she was part of take good care of your data.

Age at interview 25

Gender Female

I guess that what they’ve done is they’ve anonymised it, or de-identified it and then inputted it. I think this is a hot topic, isn’t it, how our data’s stored and used and. They always say that researchers are more worried about it than participants, but I’m not really worried about that because it’s a big study. it’s- who is it done by, is it [university]?

I think so, yeah.

You have an element of trust that they would take good care of your data and kind of manage it appropriately and to the standard you’d expect and ensure that it is, you know, de-identified and kept in a-, kept as it should be.

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Jade stopped taking part in a twins study when she was 12 years old. She didn’t like being separated from her sister to complete the tests at home, and she would have liked opportunities to meet other twins.

Age at interview 25

Gender Female

Oh yeah, well no, we did them separately. That’s another one of my memories. Being-, not being allowed to sit together to answer the questions. Which, looking back it’s obviously the entire point of it cos you’re not meant to copy each other [laugh].

But it was quite a-, I suppose it would have been different to what we were used to and probably a lot more formal.

I think it’s a shame that we stopped participating. I wonder when that happened if somebody actually sat us down and talked about why they do twins studies, and what they were using it for.

I don’t know if that happened.

Yeah.

And I don’t know if-, if they did that, whether it would have made a difference but also, I remember we only ever did this at our home. There was no-, as far as I remember, we never had any kind of interaction with other twins or kind of anything more like that. That might have made us feel part of something or feel like it was fun.

Yeah.

It was more like they get sent to your house.

Yeah.

These packs. I’m not sure if researchers came to our house or not.

So I guess that’s why we stopped.

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