A Child of the 90s
Twenty years ago, Sue James was asked whether she and her unborn child would take part in a large, long-term study looking at the genetic and environmental determinants of development and health. Twenty years later, Emma James describes what it’s like to be a ‘Child of the 90s’.
My mother has a background in genetics, so when she was asked to take part in the Avon Longitudinal Study of Parents and Children (ALSPAC), it was an offer she couldn’t refuse. The ‘Children of the 90s’ study recruited around 14 000 pregnant women from the Bristol and Bath area in the early 1990s and have been collecting data from the families ever since.
I’ve been receiving questionnaires through the post for as long as I can remember. These would quiz me on my thoughts, feelings and attitudes, and ask about my experiences of school and growing up. They can be frustrating at times and, on occasions, feel a little personal (even if it’s all anonymous). But as the study has progressed it’s become easy to see that the data really makes a difference.
When we were seven, Children of the 90s carried out their first ‘Focus Centre’ – drop-in clinic sessions that have since been running every one to two years, where we go to have measurements taken and get quizzed some more. They collect a range of data, including size measurements, fitness and blood pressure, X-rays, organ scans, blood samples and hair samples, to name a few. There are usually some cognitive tasks and interview questions as well, or further questionnaires to be completed on a computer. Sometimes the measurements can extend beyond the day itself, and I’ll go home wearing an activity monitor for the week or agree to have my blood pressure measured over a 24-hour period.
The Focus Centres have been changed and adjusted over the years to make the experience more comfortable and ensure continued participation. For example, everyone made a fuss at the first centre about having to remove clothes for being weighed, which they changed as a result. Other changes simply reflect the fact that we’re adults now – such as how our booklets of puzzles and jokes have been switched for newspapers and magazines. My first blood sample involved ‘magic cream’ to numb my arm, holding my mum’s hand and watching ‘The Very Hungry Caterpillar’ for a distraction. The blood was taken without me even realising (and if anything, I was rather miffed that I didn’t get to see the end of the video). Sadly, now we’re ’old’, giving blood samples isn’t quite so pleasant –I’d give anything for the return of magic cream and childish videos!
Being at the Focus Centre for the day can be quite tiring, but they do their best to make things easy for us – like feed us breakfast/lunch (especially if we’ve had to fast beforehand) or arrange taxis to get us there and back. It’s interesting to go through the various processes and get copies of scans at the end. It’s also reassuring to know that I could be referred to a doctor if anything abnormal showed up. Whilst some of the data collected seems a bit random – such as taking cross-sectional scans of my leg, or asking if I can hear voices that no one else can – this was always the intention: to collect everything. This is what makes the study such an exceptional resource for scientific research.
There have been many important findings from our data – such as confirming the benefits of laying babies to sleep on their backs, discovering the gene related to the tendency to be overweight, and finding that children in overly hygienic homes are more likely to develop asthma. I’ve also given my permission for my DNA to be used for the UK10K project – a large-scale study which aims to sequence 10 000 genomes to uncover more about genetic links to diseases. It’s good to know that our data is being well-used and that our efforts are making a difference.
The future of Children of the 90s is a little less clear, but it doesn’t look to be ending any time soon. Now twenty years old, the researchers are looking to continue into a third generation as the original Children of the 90s start having children of their own. And providing the study ages with me, I’m quite happy to continue my participation. I just hope they don’t continue to ask whether “you or any of your friends have ever tried alcohol” for the rest of my life – I’m a student now, after all…
Emma James is a summer intern at the Wellcome Trust.
ALSPAC is funded by the Wellcome Trust and the Medical Research Council.