Millions of young people could miss out on new and effective treatments because so few take part in medical research, according to new data showing that Gen Z is significantly underrepresented in clinical trials and health studies in England.
Analysis by The Guardian found that 18- to 24-year-olds make up 8% of England’s population but only 4.4% of medical research participants, meaning they are often left out of crucial developments in healthcare. Between 2021 and 2024, only 32,879 young adults took part in 5,042 studies supported by the National Institute for Health and Care Research (NIHR) — roughly seven per study.
Experts warn this underrepresentation could lead to treatments being developed that are unsafe or ineffective for younger populations, as most interventions are tested on older adults.
“Young people face a distinct set of health challenges shaped by life transitions, social pressures, and inequalities,” said Kirsty Blenkins, deputy chief executive of the Association for Young People’s Health. “If treatments are designed without their input, they may not be safe or appropriate, leading to poorer outcomes and reduced trust in healthcare.”
Barriers to participation include a lack of awareness, limited recruitment targeting younger adults, and concerns about confidentiality. Blenkins called for youth-inclusive research design, ensuring young people are involved from the start.
Dr Esther Mukuka, NIHR’s director for research inclusion, said many young adults don’t realise that research isn’t limited to experimental treatments for cancer or rare diseases. “It shapes how we manage everyday conditions like diabetes and mental health,” she said. “If young people don’t take part, future treatments won’t reflect their needs.”
Long-term conditions such as asthma, obesity, epilepsy, and eating disorders are common among young adults, yet their absence in trials means new therapies may not fully address their realities.
The NIHR is now running a campaign to boost participation through its UK-wide volunteer registry, which matches people with relevant studies. “Getting involved can be simple — filling out a survey or giving a saliva sample,” Mukuka said. “Even if you’re healthy, your input helps shape the NHS of tomorrow.”
Dr Wendy Macdowall from the London School of Hygiene & Tropical Medicine added that women and ethnic minorities also remain underrepresented. “To reduce inequities, we must understand how interventions work across different groups,” she said. “Otherwise, research risks reinforcing existing health inequalities.”
