Human guinea pig
What’s it like to be one of the most poked, prodded and measured people in the world? Lee-Anne Duncan, a participant in the Dunedin Study, steps out from the anonymity of the laboratory.
I’m world famous, but no one knows who I am. Every aspect of my life has been analysed, tested, recorded and laid bare, yet no one knows anything about me. That’s because, as I answer questions and submit to tests every seven years, my privacy is fiercely guarded. I’m just a four-digit number to everyone but those who take my various measurements or read me questions and record my answers.
But I’m outing myself. I’m in the Dunedin Multidisciplinary Health and Development Study, or DMHDS for less-than-snappy short, or better, ‘‘The Dunedin Study’’. I was born in November 1972 in Queen Mary Hospital, Dunedin. Because of the location and year of my birth, my parents were asked to allow their brand new daughter to take part in a brand new health study. No one knew then that I’d still be studied 45 years later, nor that there would be plans to continue studying me for another 45 years, fingers crossed and funding granted.
Of course it’s not just me. There were 1037 of us in the study then, and there are still around 960 today, with a participation percentage in the mid90s at each phase. That’s a phenomenally high retention rate and evidence of how we study members regard our responsibilities. It also lends the study’s findings a tonne of weight.
Like my fellow members, after an examination at birth I had my first assessment at three years old, with half-day assessments following every two years until we were 15. We now do full-day assessments every seven years, with the study generously flying us in from wherever we are in the world, accommodating us and reimbursing us for our time.
Until now the assessments were conducted in humble surrounds. The study’s first premises were in the Sunday School rooms at Knox Church Hall on Dunedin’s main shopping street. I remember going with my mother when I was very young, awed by the staircase. We had fun. We did puzzles and ate slices of apple. I think the apple was morning tea, not a test, but who knows?
Then, after three decades in another building that to call it ‘institutional’ would be a kindness, the study now has a permanent, purpose-built home just a good-sized punt from Forsyth Stadium. In keeping with the privacy promise, there’s no big bragging sign outside, just the study’s name and familiar logo painted on the glass door. It’s a demure entrance for a study that’s revered in medical circles around the world.
Our assessments used to be all about development, measuring how childhood factors affected our health and behaviours as adults. Now they’re very much analysing how we’re (gulp) ageing, what part our upbringing and lifestyle choices are playing in our degeneration. It’s all a bit like going to confession, and it had been seven years since my last.
Taken usually three at a time, we participants arrive a whisper past 8am on our allotted study day, unsure exactly what we’re in for but knowing we’re here until nearly 6pm. We’re told to wear light, comfortable clothes and minimal make up. That’s all fine. Not so fine are the requests to come decaffeinated and with a full bladder, and the smokers unfumigated.
Like we’ve done in every phase we can remember, we huff and puff during respiratory and cardiovascular tests, and our blood pressure is recorded many times. We puzzle our way through various games to record our cognitive prowess/decline.
We have our teeth picked at (even our plaque is scraped and stored!) and a 3D image of our entire mouth is created so they can chart wear and tear. Multiple vials of blood are taken for various tests, and we’re weighed and measured.
Our eyes are tested, our retinas photographed, and our balance challenged. None of that hurts (other than, perhaps, pride) but this year they tested how we receive pain. It didn’t hurt. Painful for some, but fascinatingly, they roll out our timelines for us to update with any significant or traumatic happenings since they last saw us. That’s a cognitive test in itself.
New this phase was a brain MRI, requiring us to lie perfectly still for 70 minutes while the machine chugs, whirrs and throbs around us. We have several scans; listening to music, then not listening to music and simply trying to stay awake while instructed to ‘‘think of nothing’’. That’s harder than it sounds … Then we do challenges to fire up various parts of our brains. In time we each receive a flash drive with our brain images and notification if anything’s amiss.
Our experiences, thoughts and attitudes also provide rich research. Some questions about our lifestyle can be confronting. No one, but no one, asks you questions like these and expects completely honest answers. But we give them – our inquisitors are all so uniformly lovely and supernaturally unshockable. But then, my life is so very beige, without enough shade to turn taupe.
I always feel I’m in a control group, I’m so boring. ‘‘No, I’ve never used a weapon on anyone. No, I don’t hear voices from the TV. No, I’ve never hit my partner.’’ I also feel very, very lucky. No, I’ve never been a victim of violence, experienced mental ill health, had surgery or lost any teeth. I’ve never had to sleep in a car or steal to feed my children. I don’t smoke. Okay, perhaps I do drink a bit more than recommended …
While the assessments are now very much about ageing, some things still seem pretty good. My hearing is excellent (husband, are you listening?). I could stand, eyes closed, on one foot longer than in my last test, and I felt more confident reperforming a dexterity test we do every year. Apparently at Phase 38, as a group we did better in that test than we did aged 13. Results surprise.
While that finding isn’t going to win any Nobel Prizes, cure cancer or change lives, there’s plenty from the study that could and does. As two examples, the study has put hard data behind many aspects of modern life we may know – percentages around infertility rates after the late 30s, and that childhood hardship can lead to costly adult life-course outcomes (more crime, obesity, welfare dependence, ill-health).
But it’s also exposed many correlations we didn’t know. For example, that dangerous or criminal behaviour in youth mostly doesn’t translate into adulthood. That finding changed policy around the world in how to deal with 17-year-olds who commit serious offences.
We now know marijuana use in young people with certain genes can lead to mental illness. We know people with another gene who are abused as children have an increased chance of turning to violence themselves.
On a lighter note, we know people in their 30s are just as likely to have drunken sex and regret it as the younger generation we generally brand with such behaviour.
The study is also looking to the next generation, studying our children. In 2008 a pleasant researcher videoed me and my then 3-year-old daughter doing puzzles. Who were they watching? Me or her? I’m still not sure!
Every phase there’s some new aspect of our lives to explore. Sometimes that’s following up on previous findings, but it’s also linked to funding. Overseas research organisations can request the study explore a certain aspect, and they’re willing to pay. That’s vital because, as well-regarded as the research project is, study head Professor Richie Poulton spends much of his time as chief fundraiser.
Bemusingly, in 2015 the study missed out on government funding but this year won the Prime Minister’s Science Prize. Go figure.
With the science prize and TVNZ’s four-part documentary, the study has enjoyed some welcome publicity recently. While Professor Poulton welcomes the profile for the study, the focus it inevitably brings on us participants makes him go all Poppa Bear. He stresses it’s us who are the true stars, but he’s determined to protect us from the spotlight. We bare our hearts and souls and hand over so much he’d throw himself in front of a bus to protect our information.
I asked for Professor Poulton’s permission to write this article. He hummed and hawed but said yes, so long as I make it clear it’s me talking about me – not the study, certainly not him.
And I think I speak for many study members when I say we’re happy to talk because we’re proud. Because of where and when we were born we have an honoured opportunity to contribute to massive medical changes and social policy shifts. And all we have to do is turn up once every few years – we’ll be 52 at our next confession.
We’ve exposed every bit of ourselves and literally opened a vein. But we know what’s extracted from us can affect the lives of millions of people for years and years to come. That’s well worth braving a few awkward questions.
No, I’ve never used a weapon on anyone. No, I don’t hear voices from the TV. No, I’ve never hit my partner.