Low Participation in Medical Trials Puts Millions of Young People at Risk

Experts warn that Gen Z’s absence from medical research could shape a generation’s health future

Millions of young people risk being left behind when it comes to life-saving treatments and healthcare innovations, as experts warn that too few members of Generation Z are participating in medical research. A new data analysis has revealed that people aged 18 to 24 who make up 8% of England’s population account for only 4.4% of participants in medical studies. This lack of representation could mean that future medicines and treatments may not be safe, effective, or appropriate for younger adults, putting their long-term health at risk.

Although younger people are generally less affected by life-threatening illnesses such as cancer or heart disease, the burden of chronic and mental health conditions among them is significant. Almost half around 45% of those aged 24 and under live with a long-term physical or mental health issue. Experts warn that without action, this generational gap in medical research could lead to decades of missed opportunities, misdiagnoses, and treatments that fail to address young people’s unique needs.

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Kirsty Blenkins, deputy chief executive of the Association for Young People’s Health, emphasized that those aged 24 and under face “a distinct set of health challenges” shaped by social pressures, major life transitions, and inequality. She explained that the lack of young participants in research has deep implications for the future of healthcare. “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,” she said. “This can lead to poorer health outcomes, delayed diagnosis, and reduced trust or engagement with healthcare systems.”

Blenkins pointed to several barriers that prevent young people from participating in studies including low awareness, lack of targeted recruitment, concerns about confidentiality, and a research culture that rarely focuses on their age group. She urged the medical community to adopt a more inclusive approach that actively involves young adults from the design stage, making participation easier, accessible, and relevant. “We need to embed youth engagement as standard practice,” she said.

Figures from the National Institute for Health and Care Research (NIHR) back up these concerns. Between April 2021 and March 2024, just 32,879 young adults aged 18 to 24 took part in 5,042 NIHR-supported studies averaging only seven young participants per study. By comparison, adults aged 85 and above, who make up just 2% of England’s population, contributed more than 32,000 participants over the same period, representing 4.2% of total research participants.

Dr. Esther Mukuka, NIHR’s director for research inclusion, said that many young people simply don’t realize they can take part in health research — or that it’s relevant to them. “When people think of research, they often picture experimental treatments for serious illnesses like cancer,” she said. “But it’s so much more than that. Research shapes how we manage everyday conditions like diabetes, asthma, and mental health support on the NHS. Gen Z faces unique health challenges and engages with the healthcare system differently — we need their voices to make research truly representative.”

Common long-term conditions affecting young adults include diabetes, obesity, asthma, learning difficulties, autism, eating disorders, epilepsy, and a range of mental health conditions. Without their participation, Mukuka warned, “the treatments and services developed will not reflect their needs.” She added that science is advancing faster than ever, and ensuring that new treatments match the diversity of society is vital. “Health and care systems need to evolve with society, so it’s crucial that young people take part in research now,” she said.

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To address this gap, the NIHR has launched a campaign encouraging more people to join health and care studies through a UK-wide volunteer registry. This platform helps match individuals with research opportunities that align with their interests or health concerns. “Getting involved can be super simple,” Mukuka explained. “It could mean filling out a short survey, giving a saliva sample, or taking part in a short interview. Even if you don’t have a health condition, you can still contribute it’s about shaping the NHS of tomorrow.”

Dr. Wendy Macdowall, from the London School of Hygiene & Tropical Medicine, said underrepresentation also affects women and ethnic minorities. “To reduce inequities, it’s not enough to know whether interventions work,” she said. “We need to understand how different groups experience them, so healthcare professionals can make informed decisions and prevent interventions from worsening inequalities.”

Experts agree that the future of medicine must include everyone and that starts with getting young people involved now. Without their participation, the next generation risks facing a health system that doesn’t see or serve them fully.

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