My umbilical cord is in a deep freeze somewhere in Bristol, along with my placenta, nail and hair clippings, baby teeth, blood, urine and saliva. My whole life, I’ve given biological samples and psychological data to a team of researchers at Bristol University. They know my innermost thoughts and feelings, my family history, my friendships, how quick my reaction times are and how well my ears, eyes, lungs and heart function.
I’m part of a longitudinal medical research group and have been since before I was born. My mum signed me up to it when she was in a maternity ward in Bristol, about to give birth to me. It was January 1992 when she noticed a woman walking around with a clipboard, talking to expectant mothers. The woman wasn’t dressed like a midwife or a doctor, she was a medical research study recruiter. She approached each mother-to-be and explained that she was from ALSPAC – Avon Longitudinal Study of Parents and Children (also known as Children of the '90s) – a birth cohort study looking at the health of children, for scientific research. I’m 27 now and still part of the same study.
When I tell people this fact about myself, the general assumption is that I am a human ‘test monkey’, that I voluntarily nominate myself for unsafe clinical trials or that I’m injected with new, potentially dangerous treatments and receive financial gain from it. Their reaction is a look of worry and scepticism, then inevitable curiosity.
I started this journey completely oblivious; I was a newborn, after all. I’ve since asked my mum why she signed me up. Wasn’t it weird that a stranger was walking around a hospital asking after unborn children, and did she know what the study would involve? Here's what my mum says: “I saw the lady talking to other people. I was curious and actually quite pleased when she came to talk to me because I got to find out what she was doing. It was a bit odd I suppose, but I didn’t mind as it was made very clear that I could back out at any time and it was for invaluable research purposes.
“I knew we would only be in Bristol for a short time so I thought it would end when we moved away. I had no idea about everything we were going to be asked or for how long but it’s never felt like too much. I quite enjoyed the special attention my baby had!”
We moved to Devon when I was 4 months old and Mum would post my medical samples. She’d trim my nails and hair as a baby and put the clippings in a pouch to be delivered to the Bristol clinic. Questionnaires came through the door asking about the environment I was living and growing in; if our house had newly painted walls and if so, what type of paint had my parents used; whether our carpets were new; if my parents were smokers; was Mum breastfeeding me. My immediate family members were also studied, although not quite as in depth – they’d answer questions about their health to provide a complete picture of my upbringing.
The earliest memory I have of being in the study is attending an all-day clinic aged 7. Mum and I were welcomed by a team of volunteers, nurses and study professionals. I was brought into a room to give blood. I remember the visceral feeling of hunger beforehand – I wasn’t allowed to eat anything in order to give a fasted blood sample – and the sheer joy of helping myself to the breakfast buffet afterwards. I was never in pain, they used numbing cream on my arm and distracted me with cartoons on TV. I was never uncomfortable or forced into anything, and was constantly reassured that I didn’t have to do anything I didn’t want to. I was happy to help, although maybe not fully understanding what I was doing at the time. We’d be there from 10am to 5pm and Mum would wait for me or come to the sessions when she could – she wasn't allowed into the psychological tests or questions about family members and my relationships in case her presence altered my responses.
As I’ve grown older, the questions I’ve been asked have changed and become more sensitive. As a teenager I was asked if I had ever been touched by a family member in a way that made me feel uncomfortable. Had I ever used class A drugs or had thoughts or intentions of suicide? I always answered truthfully. Now that my growth has slowed, time between clinics has increased; I attend around once every two years. The way in which we are treated has grown with us, too. We’re thanked and incentives have moved from Disney stickers to shopping vouchers, and our transport costs are always reimbursed. The organisation gives study participants official letters to ask for a paid/authorised day off in the name of medical research, which is useful now that I’m working full time.
The range of tests I have undertaken for ALSPAC is extensive and the same tests are often repeated for age comparison. I’ve had my heart and carotid artery scanned, allergies determined, bone density measured, my grip strength, lung function, balance, recall, speech and memory put through their paces. It’s an incredible insight into your own health. The study found that I was asthmatic, that my blood sugar was once too high and that I had scoliosis; significant health finds were always promptly communicated to my GP and I was advised to come in and speak to my doctor. The study also revealed why I’m so sensitive to loud noise. I can hear at -5 decibels, which is quieter than a snowflake falling to the ground – a fact, ironically, that I like to shout about. Luckily, I haven’t been diagnosed with anything serious but I am grateful for the opportunity to find out before most people probably could.
In the 21st century, data breaches and misuse of personal information is a hot topic. I’m aware that this study has huge quantities of data on me but I also know that it’s stored under a unique number assigned to me, rather than my name. Has it ever crossed my mind that the study could use my DNA in a way I’m unaware of? Of course. Have my siblings ever joked that I could be cloned very easily? Yes, and I always respond: “Don’t come crying to me when you need my stem cells!” All the information this study has collected on me is confidential and consensual and I trust that it will be used only for scientific research. That mothers should put their babies to sleep on their backs to prevent cot death and that peanut allergies can result from peanut oil in baby products were both researched and discovered by ALSPAC. Information like this saves lives and I’m proud to say that I’m part of it.
The study will keep going as long as funding is available. It's rare to have a tri-generational study and the original participant group of more than 14,000 people, to which I belong, are now having their own children and ALSPAC has started to recruit the Children of the Children of the ‘90s.
I’d like to meet the founder of ALSPAC, Professor Jean Golding, to thank her for including me, for the 2000th academic research paper the study has released this year and for creating the most detailed study of its kind in the world. In the meantime, I have another clinic to attend next month so I’m off to Bristol again. Far from feeling like a test monkey, I feel lucky to be part of this and one day I hope to enrol my children, too.