Experts warn that millions of young people risk missing out on new treatments for diseases and being forced to use drugs that are unsafe, ineffective or inappropriate because so few take part in medical research.
Data analysis by the Guardian shows that members of Generation Z, born between the late 1990s and early 2000s, are significantly underrepresented in clinical trials and health research.
People aged 18 to 24 make up 8% of the population in England, but only 4.4% take part in medical research.
Although young people are less susceptible to life-threatening conditions such as cancer and heart disease, they still experience a significant burden of disease. Nearly half—45%—of people aged 24 or younger have a chronic physical or mental health condition.
Experts said the lack of young people participating in research will have a serious impact on their physical and mental health for decades unless urgent action is taken to reverse the trend.
Kirsty Blenkins, Deputy Chief Executive, Youth Association HealthHe said adults aged 24 and under faced a “distinct set of health challenges” that were often “shaped by major life changes, social pressures and inequalities” that affected their physical and mental well-being.
Their absence from clinical and medical research projects has had serious consequences, she added.
“Treats and interventions may be developed and tested primarily on older people, meaning they may not always be safe, effective or appropriate for younger populations. This can lead to poorer health outcomes, delayed diagnosis and decreased trust or engagement with health systems.”
The lack of Gen Z in research is likely due to several factors, Blenkins said. “Barriers to participation include limited awareness of research opportunities, lack of targeted recruitment, concerns about confidentiality and a research culture that is rarely developed with or for young people.
“Increasing representation requires more inclusive research design, involving young people from the start, making participation accessible and relevant, and embedding youth engagement as standard practice throughout the research system.”
National Institute for Health and Care Research (NIHR) data analyzed by the Guardian showed adults aged 18 to 24 are significantly underrepresented in health research.
Between April 2021 and March 2024, 32,879 adults aged 18 to 24 took part in 5,042 studies supported by the NIHR Research Network, equating to approximately seven young people per study.
This age group makes up 8% of the population in England, but only 4.4% of participants in NIHR Research Network projects. In contrast, people aged 85 and over make up just 2% of the population, but 32,031 people signed up for the study over the three years to 2024, representing 4.2% of participants.
“Young people are often unaware that they can and should take part in health research,” said Dr Esther Mukuka, NIHR director of research inclusion. “When people think of research, they often think of experimental treatments for serious diseases such as cancer, but there is more to it than that.
“Research is shaping how we cope with everyday illnesses such as diabetes and how mental health support is offered on the NHS. Generation Z faces their own unique health challenges. They also interact with the health system differently.”
Long-term health conditions affecting young people include diabetes, obesity, asthma, autism, learning difficulties, epilepsy, eating disorders and a range of other mental illnesses.
“If this group does not participate in research, the treatments and services developed as a result will not reflect their needs,” Mukuka said. “Scientific discoveries are advancing further and faster than ever before, and it is 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 is vital that young people take part in research now. Without their input, future treatments will not be as representative or effective as they should be.”
The NIHR campaign aims to encourage more people to take part in health and care research. Its register of volunteers across the UK. makes it easy to join research by matching people with opportunities that match their health concerns and interests.
Anyone can take part in the study, regardless of whether they have a health condition or not. Some studies have focused on people without the condition.so that researchers can compare them with those who have it.
“Participation can be as simple as filling out a quick questionnaire or providing a saliva sample,” Mukuka said. “And if you don't have health problems, still consider getting involved. You can still help shape the NHS of tomorrow. Think of it as an investment in the kind of care you'd want for yourself, your friends and your family.”
Dr Wendy McDowell, a medical research expert at the London School of Hygiene and Tropical Medicine, said women and ethnic minorities were also under-represented in research.
“To reduce inequality, it is not enough to know whether interventions ‘work’. We also need to know whether they perceive certain groups of people differently.
“Understanding how different groups experience interventions is key so that practitioners can make informed decisions about their adoption in specific subgroups and ensure that interventions do not inadvertently cause or exacerbate inequalities.”
