A-Infos (en) Italy, FAI, Umanita Nova #6-26 - Invisible Bodies. Breaking Down Discrimination - Achieving Health (ca, de, it, pt, tr)[machine translation]

Modern science presents itself as universal knowledge, capable of 
describing the human being in its entirety. Yet, its history tells a 
different story: for centuries, medical research has built its 
certainties by adopting the male body as a reference model. The female 
body has long been subordinated to a paternalistic vision that reduced 
it to an object of male control. This paradigm has not only affected the 
social and cultural spheres, but has also permeated scientific research. 
The stories of Anarcha Westcott and Henrietta Lacks are emblematic. The 
former, a young African-American woman enslaved in the 19th century, was 
subjected to repeated gynecological experiments by the so-called "father 
of modern gynecology," based on the racist belief that black women 
experienced less pain. The latter, an African-American woman who died of 
cancer, was denied consent during her lifetime for the collection of her 
cells, which later became crucial for biomedical research. Their stories 
show how medical knowledge has often been built on the female body, 
transformed into a testing ground and exploitation, rather than 
recognized as a subject with rights, especially when it belongs to 
marginalized groups.

These cases are part of a broader tradition of abuse and unethical 
experimentation on African-American women in the United States. Between 
1920 and 1970, thousands of Black women underwent forced sterilizations. 
The so-called "Mississippi appendectomies" were unnecessary and 
non-consensual hysterectomies performed in university hospitals, 
sometimes as an exercise for medical students or as a means of birth 
control among Black women. The female body, in this context, was not a 
subject to be treated, but a resource to be utilized.

While some women were exploited as objects of experimentation, others 
were systematically and institutionally excluded from research. For much 
of the history of modern medicine, the male body was considered the 
universal model of the human being. In basic research, animal studies, 
and clinical trials, men and women have been the norm, while the female 
body was deemed too complex or unstable due to hormonal cycles. The 
result is a medicine built on incomplete data, which does not represent 
half the population.

A crucial stage in this exclusion dates back to 1977, when a US Food and 
Drug Administration (FDA) guideline recommended excluding women of 
childbearing age from the early stages of clinical trials. The measure 
was born in reaction to scandals surrounding drugs like thalidomide, 
which was responsible for serious fetal malformations in the 1960s. In 
an attempt to protect potential pregnancies, however, the rule ended up 
effectively excluding all women with reproductive capacity, including 
those using contraception or not sexually active. Protection turned into 
erasure.

For decades, drugs and medical devices were tested almost exclusively on 
men, and the results were applied to women as if the two bodies were 
identical, ignoring biological differences related to hormones, 
metabolism, and physiology. Only in 1993 was the guideline revoked, and 
the National Institutes of Health mandated the inclusion of women in 
publicly funded trials. However, the mere presence of women did not 
automatically guarantee differentiated analyses: data was often 
aggregated, obscuring differences in treatment response.

This disparity is not only an ethical problem; it has had and continues 
to have concrete consequences for women's health. Drugs effective in men 
may be less effective or more risky for women, or require different 
dosages. It is no coincidence that once drugs are on the market, side 
effects are more frequent in women: women experience adverse effects 
almost twice as often as men.

The imbalance is particularly evident in cardiology. Cardiovascular 
disease is the leading cause of death among women, yet women are 
underrepresented in trials and less recognized clinically. This results 
in delayed diagnoses, less access to appropriate treatments, and higher 
mortality. This is the phenomenon known as Yentl syndrome: women are 
treated appropriately only when they exhibit typically male symptoms. 
The male model continues to function as an implicit parameter, and 
anything that deviates from it risks being overlooked.

The problem extends to other areas: endometriosis, polycystic ovary 
syndrome, autoimmune diseases, and pregnancy complications remain 
understudied and underfunded, despite their enormous impact on quality 
of life. Endometriosis, which affects approximately one in ten women, 
can take up to ten years to be diagnosed. Polycystic ovary syndrome, in 
addition to being a leading cause of infertility, increases 
cardiovascular risk, but for decades was considered solely a 
reproductive disorder.

More advanced regulations and a growing awareness of the importance of 
gender-specific medicine have been introduced in recent years. Since 
2016, the National Institutes of Health in the United States has 
required researchers funded by the institute to consider and analyze 
biological sex differences, including in preclinical research and animal 
testing.

In Europe, too, the gender perspective has gradually entered research 
policies: the European Union's framework programs, including the current 
Horizon Europe, require the integration of sex and gender into study 
design when relevant. International organizations, such as the World 
Health Organization, have repeatedly emphasized the need to bridge the 
gap in women's health research. Despite this, research on diseases that 
predominantly affect women receives less funding than other areas.

In Italy, with Law 3/2018, gender medicine was formally incorporated 
into the National Health Service, recognizing the need for a 
differentiated approach to prevention, diagnosis, and treatment. In 
2019, a National Plan for the Application and Dissemination of Gender 
Medicine was adopted, with the aim of permanently integrating this 
perspective into research, training, and care pathways.

However, even in Italy, structural and application limitations remain 
that reduce its concrete impact. Implementation is uneven across the 
country: some centers have developed structured training programs, 
others rely on the initiative of individual professionals. Furthermore, 
teaching about sex and gender differences in medical degree programs and 
graduate schools is not integrated into the curricula, but at many 
universities it is offered as optional modules or supplementary seminars.

The disparity in experimental models persists, especially in the early 
stages of studies and in basic research, where male-dominated models 
continue to be favored for reasons of simplicity and cost, limiting the 
possibility of developing truly personalized therapies.

The historical exclusion of women from clinical trials has created a 
knowledge gap that is still reflected in daily clinical practice today: 
late diagnoses, less effective therapies, and an incomplete 
understanding of many diseases. The gap is even more pronounced for 
women belonging to marginalized groups-Black, migrants, LGBTQIA+, or 
living in rural areas-who face additional economic, cultural, and 
institutional barriers to accessing care. Scientific inequalities thus 
intertwine with social ones, amplifying their effects.

Overcoming centuries of invisibility and exploitation of women's bodies 
requires more than mere participation quotas. A cultural transformation 
is needed that recognizes sex and gender as fundamental scientific 
variables. Overcoming this imbalance is not just a question of 
representation, but of scientific quality and the right to health: 
bridging the gap means building more precise, safer, and truly inclusive 
medicine.

Minerva

https://umanitanova.org/corpi-invisibili-abbattere-la-discriminazione-conquistare-la-salute/
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