Chapter 03

Science was built on the wrong body

Women are systematically underrepresented in clinical trials, excluded from drug safety studies, and left out of the data that drives medical decisions — with life-threatening consequences.

41.2%
Average female participation in clinical trials (2016–2019), across 1,433 trials and 302,664 participants
80%
Of 2021 preclinical drug safety studies used only male mice
52%
More adverse drug events reported by women than men since 2000
3.5×
More likely for a drug to be recalled for safety risks specifically in women since 1980

Female participation by field (2016–2019)

Despite representing half the population, women remain consistently underrepresented across all therapeutic areas of clinical research.

Psychiatry42%
Cardiovascular41.9%
Cancer41%
CVD trial leadership (cardiology)10.1%
Obstetrical clinical trials (US)2%
Horizon Europe health project coordinators (women)37%

Women in senior research roles

The "leaky pipeline" means women start equal at student level but are progressively pushed out of leadership, perpetuating male-centred research priorities.

Medical students (approx. equal)~50%
EU physicians who are female (majority of countries)>50%
EU full professors/directors of research (2018)26.2%
Women cardiologists in Ireland8%
Women cardiologists in UK16%
Female researchers → 35% more likely to develop women's treatmentsAll-female teams

What happens when women are left out of data

01

Drugs that don't work — or actively harm

Women experience adverse drug reactions twice as often as men. Since 2000, women in the US reported serious or fatal drug events 36% more often. Yet women remain underrepresented in the trials that approve these drugs.

02

Delayed diagnosis across hundreds of conditions

A 21-year Danish population study found women were diagnosed later in 770 diseases. Cancer took 2.5 extra years; metabolic diseases 4.5 years. Every year of delay means worse outcomes and unnecessary suffering.

03

Misdiagnosed, undertreated, dismissed

When only 50% of medical interventions use sex-disaggregated data, 64% of the rest placed women at a disadvantage. The lack of data feeds a cycle of undertreating, mistreating, or simply not treating women.

04

Pregnant women excluded from essential medications

Less than 0.4% of EU clinical trials include pregnant women; only 0.1% include lactating women. Yet over 90% of pregnant women require medication — most of it untested for their specific physiology.

05

Underfunded conditions with massive burden

In 2020, only 5% of global R&D funding went to women's health — just 1% to all non-cancer women's conditions, with 25% of that limited to fertility. Conditions causing widespread disability remain unstudied.

06

40–45 million disability-adjusted life years lost per year

The World Economic Forum estimates this is the scale of the women's health gap — equivalent to 4 days per woman per year, every year. Closing it could add $1 trillion to the global economy annually by 2040.

The EU Regulatory Framework: Progress and Gaps

The EU has taken significant legislative steps — but implementation varies widely, enforcement is weak, and implicit bias persists beyond explicit rules.

2001

Clinical Trials Directive (2001/20/EC)

Established ethics committees and first framework for clinical trial oversight across the EU.

2014

EU Regulation No. 536/2014

Requires trial participants to represent population groups including gender and age. Mandates sex-disaggregated analysis of results. Includes new protections for pregnant and breastfeeding women.

2016

SAGER Guidelines (EASE)

International guidelines for systematic reporting of sex and gender across scientific disciplines and all stages of research.

2022

ACT EU Initiative

European Commission, EMA, and HMA launched initiative to boost clinical trial activity in Europe by 10% over 5 years and increase diverse participation.

2025

EMA New Guideline on Pregnant Women

New guideline calls for inclusion of pregnant and breastfeeding women in clinical trials for all new drugs, with clear scientific, regulatory, and ethical principles.