What made it even more threatening was that this new subtype of the virus – H5N1 – could also apparently be transmitted to mammals. “It can infect about 50 bird species and 10 mammalian species,” Capua says, “including humans.” The results were often lethal with half of the people infected with H5N1 dying from the disease.

The H5N1 virus spread like a bush fire at the start of the new millennium from Vietnam across Thailand to China, through Central Asia and on to Europe, where, according to Capua, it “did not cause much damage.” It finally reached Africa in early 2006 with devastating consequences, killing almost 370,000 birds in Nigeria alone, where H5N1 was first detected on the African continent. Chickens were the primary victims, but ducks and geese also succumbed. People also fell ill. From Nigeria, the virus soon worked its way across the continent and ten African countries reported H5N1 outbreaks within a year. But there were a lot of unanswered questions. “Nobody knew how the virus had gotten to Africa, how it was spreading, and how dangerous it really was,” Capua recalls.

Finally, the phone call: “We would like to have the virus typed, and we would like you to do it,” a Nigerian scientist told her on the phone. Capua accepted the request. She asked for a sample be sent to her lab, where she analysed, unrolled and characterised it.

Finally, the phone call: “We would like to have the virus typed, and we would like you to do it.”

WHO: results behind a password wall

Then the phone rang again. This time a representative of the World Health Organization (WHO) was on the line requesting that Capua turn over her results – the fingerprint of the African H5N1 variant. The sequence would then be stored in the WHO Surveillance Network database, to which 15 selected laboratories worldwide would have access. “But,” Capua adds, “only the large ones, of course, the important ones, and the whole thing locked behind a password wall!” Her indignation is clearly visible when she recounts the story. The WHO flattered her and tried to win her over by promising that publication in this elitist database would make her name, even make her famous, she recalls.

Fame in science, Capua notes, comes with challenges. For a long time, it had gone like this: a researcher makes a discovery, uncovers a connection or develops a formula. Then, instead of sharing it early in the process so colleagues can work with and advance the finding further, the results get tucked into drawer until the researcher can publish them. Publication is the make-and-break of research and a scientist’s reputation rises with the number of publications.  

“Going against the interest of public health”

But especially in the context of a virus that threatened world health, here the bird flu, this secrecy seemed “completely illogical” to Capua. “We were dealing with a potential pandemic that might kill 50%; I was working with European taxpayers’ money. So how could I possibly be so naïve to share my personal data with a restricted-access databank that just 15 laboratories have access to and deny thousands and thousands of researchers an opportunity to work with it? In fact, that would go against the interests of public health.”

The virologist refused to turn over her findings and even took it one step further. Working with colleagues, she published her results in “GenBank”, an open-access DNA sequence database run by the US National Center for Biotechnology Information. She defends her decision: “Real-time availability of genetic information is essential for timely monitoring of viral evolution. We firmly believe that knowledge of the genetic profile of avian influenza viruses from animals is a prerequisite to understanding a complex disease that has already killed hundreds of millions of birds worldwide and that is threatening human lives.”

How could I possibly be so naïve to share my personal data with a restricted-access databank […] and deny thousands of researchers an opportunity to work with it?

Shortly thereafter, she helped found GISAID (Global Initiative on Sharing All Influenza Data), an international research project that brings together flu data – genetic information, laboratory data and information on the biological properties of viruses – from around the world. A good 12 years later, this will be the very database German researcher Christian Drosten, Chief Virologist at Berlin’s Charité University Hospital, uses to publish the first sequencing of the SARS CoV2 virus.

Her staunch opposition made her famous

Ilaria Capua’s refusal to comply with the WHO’s request created a bit of a furore. It angered the WHO and the small circle of elite laboratories promoted by the WHO. But the media picked up the story and suddenly Ilaria Capua was known far beyond scientific circles as the researcher who dared to defy the WHO. In 2008, a science magazine named her a “Revolutionary Mind” – “for her leadership role in sharing information internationally.”

It took the WHO another five years to follow Capua’s lead and make research data on viruses available to a wider public, which it touted as a progressive advance and major breakthrough.

Capua has moved on in the meantime. After a three-year excursion into Italian public policy, the 54-year-old now works in the USA and has accepted a professorship at the University of Florida, where she heads the One Health Center of Excellence for Research and Training. Since the outbreak of the Corona crisis, however, Italy has once again sought her advice. She gives interviews to television stations in her home country, though she emphasizes that she has withdrawn from virology.

A good 12 years later, this will be the very database German researcher Christian Drosten uses to publish the first sequencing of the SARS CoV2 virus.

Role model for young scientists

What currently drives her more is motivating young scientists and sharing her experience with them. When she tells her story at TED conferences, she asserts that she is not a genius, but a normal person who just did a “wise thing with all her heart.” While she tends to jokingly reject her “Revolutionary Mind” title as an exaggeration, she refers to it when encouraging her audience to take action, telling them that they as young, rising scientists can make a difference if they push through. She tells listeners that they will repeatedly encounter obstacles in their careers, injustices or circumstances that they will not feel are right. It then takes courage to be what she calls the “spark of change”. But it is worth it. “Because you know,” she says, “you simply have to change things when you know they're wrong.”