IN BRIEFClick here for the key takeaways In France notably, during the 1990s, association-led action in the context of the HIV pandemic resulted in the development of “health democracy”. Six years following the onset of COVID, anthropological research focusing on an association for victims’ families in Bergamo, Italy—where the pandemic began in Europe—show that legal action can have a significant impact. The redefinition of the crime of “culpable epidemic” by Italy’s Highest Court could inspire legislative changes elsewhere in Europe and worldwide. Close

The World Health Organization (WHO) recommends involving populations in the response to epidemics, and even co-constructing responses with them. This approach is in line with “ health democracy” that is enshrined in French law and developed by a movement combining ethics, human rights, and public health. As a reminder, health democracy is an approach that aims to involve service users, professionals, and public decision-makers in the development and implementation of health policies in a spirit of dialogue and consultation.

However, the importance attached to this concept varies from country to country, and its practical application is debated whenever a new outbreak occurs. This is currently the case with the Ebola outbreak in the Democratic Republic of the Congo.

In the context of COVID, using the law to enforce health democracy

In Italy, the association network was mobilised during the COVID pandemic for rescue and care interventions, but was not involved in public health decisions. In Bergamo, Sereni e sempre uniti (“Serene and Always United”) is an association that was founded by families of victims during the pandemic with the goal of mutual support and advocacy.

From the perspective of the socio-anthropology of associations, this organization has adopted a unique positioning that holds major scientific interest. It differs from other associations representing healthcare professionals, families, or people living with HIV, in that it uses the law as a tool to enforce health democracy.

Our research began in 2020. Initially centred on experiences with COVID and the social relationships between patients, families, and healthcare professionals and around Bergamo and in the Seriana Valley, it gradually shifted focus to the association’s rationales of action in response to the failure of public health systems in a province where 6,000 deaths were mourned.

Ethnographic investigations (participant observation and traditional methods) have continued to the present day to ensure full documentation of the process.

A case of flawed crisis management by the Italian authorities

The first European country to be hit by an outbreak of the pandemic, Italy recorded its earliest cases in the highly industrialised Seriana Valley. While the Lombardy region boasts a renowned healthcare system,........

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