Millions of young people risk missing out on new treatments for health conditions and having to use medicines that are unsafe, ineffective or inappropriate because so few take part in medical research, experts have warned.
Data analysis by the Guardian reveals that members of gen Z – those born between the late 1990s and the early 2000s – are significantly underrepresented in clinical trials and health studies.
People aged 18 to 24 make up 8% of England’s population, but only 4.4% of those taking part in medical research.
Though less affected by life-threatening conditions such as cancer and heart disease, young adults still experience a significant burden of disease. Almost half – 45% – of those aged 24 or under have a long-term physical or mental health condition.
Experts said the lack of young people participating in research would have a serious impact on their physical and mental health for decades unless urgent action was taken to reverse the trend.
Kirsty Blenkins, the deputy chief executive of the Association for Young People’s Health, said adults aged 24 and under faced “a distinct set of health challenges” that were often “shaped by major life transitions, social pressures and inequalities” that impacted their physical and mental wellbeing.
Their absence from clinical and health research projects had serious implications, she added.
“Treatments and interventions may be designed and tested primarily on older adults, which means they may not always be safe, effective, or appropriate for younger populations. This can lead to poorer health outcomes, delayed diagnosis, and reduced trust or engagement with healthcare systems.”
Several factors probably explained the lack of gen Z members in studies, Blenkins said. “Participation barriers include limited awareness of research opportunities, lack of targeted recruitment, concerns about confidentiality, and a research culture that is rarely designed with or for young adults.
“Increasing representation requires a more inclusive research design, involving young people from the start, making participation accessible and relevant, and embedding youth engagement as standard practice across the research system.”
Figures from the National Institute of Health and Care Research (NIHR) analysed by the Guardian showed adults aged 18 to 24 were significantly underrepresented in health research.
Between April 2021 and March 2024, 32,879 adults aged 18 to 24 took part in 5,042 studies backed by the NIHR research delivery network, which equates to only about seven young people per study.
The age group make up 8% of England’s population, but only 4.4% of participants in NIHR research delivery network projects. By contrast, those aged 85 or older represent just 2% of the population, but 32,031 signed up for research over three years to 2024, representing 4.2% of participants.
“Young people often don’t realise that they can and should take part in health research,” said Dr Esther Mukuka, the NIHR director for research inclusion. “When people think of research, they often picture experimental treatments for serious illnesses like cancer, but it’s so much more than that.
“Research shapes how we manage everyday conditions like diabetes, and how mental health support is offered on the NHS. Gen Z is faced with their own unique health challenges. They also engage with the healthcare system differently.”
Long-term health conditions affecting young adults include diabetes, obesity, asthma, autism, learning difficulties, epilepsy, eating disorders and a range of other mental health conditions.
“If this group does not participate in research, the treatments and services developed as a result will not reflect their needs,” said Mukuka. “Scientific discovery is moving further and faster than ever. And it’s clear that the treatments of tomorrow will be very different from what we understand today.
“Health and care systems need to evolve with society, so it’s crucial that young people take part in research now. Without their input, future treatments won’t be as representative or effective as they need to be.”
A NIHR campaign aims to encourage more people to take part in health and care research. Its UK-wide volunteer registry makes it easy to join studies, by matching people with opportunities that align with their health concerns and interests.
Anyone can take part in research, whether they have a health condition or not. Some studies seek to study people without the condition, so researchers can compare them to those who have it.
“Getting involved can be super simple, including filling out a quick survey or giving a saliva sample,” said Mukuka. “And if you don’t have a health condition, consider taking part anyway. You can still help shape the NHS of tomorrow. Think of it as investing in the kind of care you’d want for yourself, your friends, and your family.”
Dr Wendy Macdowall, an expert in health research at the London School of Hygiene & Tropical Medicine, said women and ethnic minorities were also underrepresented in research.
“To reduce inequities, knowing whether interventions ‘work’ is not enough. We also need to know whether particular groups of people experience them differently.
“Understanding how different groups experience interventions is key in order that practitioners can make informed decisions about their adoption in specific sub-groups and to ensure that interventions don’t inadvertently produce, or exacerbate, inequities.”
