Data imperialism in a pandemic: How to make things fall apart

Scientists in wealthy countries have regularly refused to acknowledge and have blatantly misappropriated contributions and discoveries of scientists in developing countries. Picture: Timothy Bernard/African News Agency (ANA)

Scientists in wealthy countries have regularly refused to acknowledge and have blatantly misappropriated contributions and discoveries of scientists in developing countries. Picture: Timothy Bernard/African News Agency (ANA)

Published May 1, 2021

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In January, an independent panel of the World Health Organization (WHO) issued an interim report on the global response to Covid-19, highlighting ways in which nations and the WHO could have acted more quickly to contain the pandemic.

Singapore’s Deputy Prime Minister urged governments and public health agencies to learn from the experience, so they can react to the next pandemic more swiftly and with greater coordination. Nonetheless, he emphasized that “there were still bright spots,” pointing to an unprecedented level of information sharing and cooperation in science and technology through an independent global data-science initiative called GISAID.

This collaboration by governments and researchers through GISAID also was praised by the WHO’s Chief Scientist as a “game changer.”

The first genomic data of the newly discovered coronavirus shared by China CDC through GISAID enabled the development of the first diagnostic tests to detect, and the first vaccines to protect against, Covid-19.

The GISAID Initiative has become a beacon of global solidarity for both developed and developing countries, which have shared viral sequence data of more than one million COVID-19 cases.

GISAID’s unique data sharing agreement has been embraced by 40 African nations that share their SARS-CoV-2 data through GISAID.

“Africa plays a critical role in global health security, as the surveillance of emerging variants of the virus has taken centre stage” says Dr. Amadou Sall, the Director of Institute Pasteur de Dakar in Senegal. “We’re helping the world stay ahead with effective medical countermeasures.”

Although most of the world has celebrated this historic global collaboration, a small group has mounted a concerted effort to undermine GISAID, even while we are still in the throes of the pandemic.

A wolf in “open data” clothing

Earlier this week, a headline in a German newspaper sounded the alarm, reporting that the Head of the US NIH, Dr Francis Collins- who controls the largest research fund in the world and oversees the American public-domain data repository - has commenced an all-out attack on GISAID and, effectively, the thousands of data generators around the globe who share their data and collaborate through GISAID.

It all began in February, when Dr Collins’ partner, a UK-based group that mirrors his data repository, called on researchers to make the data they generate available through these public-domain repositories, where the submitter’s rights are extinguished.

Access and use of data in these UK and US repositories take place anonymously, and they do not offer data generators or their countries any protections, ignoring even their most basic rights. This gives well-connected and well-funded users the ability to exploit and benefit from the shared data without even acknowledging the data contributors, let alone collaborate with them in any research.

Back-to-back news articles in Nature News and Science magazine publicised the UK-based group’s call, while painting a distorted picture of GISAID and its sharing mechanism as well as treating as newsworthy complaints by a handful of researchers who grumble that the protections for data contributors are too “onerous.”

At the same time, in a move right out of the colonial playbook, an effort called PHA4GE - whose steering committee is headed by the US Centre for Disease Control’s “Chief Scientific Officer” and an epidemiologist at the Bill & Melinda Gates Foundation - has targeted GISAID data contributors in Africa and Asia, offering financial incentives to laboratories generating SARS-CoV-2 data.

There is, of course, a catch: in exchange for USD$30,000 -a pittance to the wealthy donors - data generators must agree to deposit their data in public-domain repositories. PHA4GE does not explain to the data generators that, if they do so, they will effectively relinquish all of their rights to the genomes of the virus collected in their country.

Neo-colonial effrontery

Those pushing for unrestricted use of data reject basic scientific etiquette, demanding that data generators, especially in poor countries, relinquish all rights to their data, even their right to have their contributions acknowledged.

The sheer effrontery is staggering. But it is not surprising. A neo-colonial mentality has long permeated the scientific community, as scientists in wealthy countries have regularly refused to acknowledge—and have blatantly misappropriated—the contributions and discoveries of scientists in developing countries.

This behaviour has been so normalized that it goes virtually unnoticed in the Global North, while it is obvious—and all too familiar—to scientists in the Global South.

Consider the story of Dr Jean-Jacques Muyembe, the Congolese doctor who discovered Ebola in 1976.

While he is a national hero in Congo, few elsewhere have even heard of him. Instead, Dr Peter Piot - a Belgian microbiologist with whom Dr. Muyembe shared blood samples containing the Ebola virus - took credit for discovering the new pathogen.

Dr Piot, who went on to enjoy a prestigious career as Executive Director for UNAIDS and then as director of the London School of Hygiene and Tropical Medicine, now acknowledges that he and his colleagues “simply excluded” African scientists.

Dr Muyembe’s story is but one in a long litany of tales of African scientists who were poorly treated, ignored, and overlooked as their Western colleagues claimed African discoveries. It also provides an important object lesson: having suffered such ill treatment, Dr Muyembe declined to send blood samples out of Congo during the recent Ebola outbreak.

Flu researchers have had similar experiences. For decades, developing nations freely shared their influenza viral genomes, even though they often were excluded from the benefits of research based on their discoveries. This inequitable treatment was dramatically highlighted during a deadly bird flu outbreak in Indonesia. Unable to afford vaccines developed with its virus samples, Indonesia was the first nation to eventually draw the line, when it temporarily stopped sharing its viruses in 2007.

To overcome the increasing reluctance to share data, governments and researchers engaged in the development of the GISAID data-sharing agreement. While the agreement calls for data generators to make their data publicly accessible, it ensures that their ownership rights are preserved. Researchers using these data are legally committed to acknowledge, and make best efforts to collaborate with, the contributors.

GISAID has been an unmitigated success since it went live in 2008. It is now an intrinsic component of global surveillance for pandemic and zoonotic threats. Indeed, even before GISAID became operational, its founders were able to persuade Indonesia to once again share bird flu genomes.

In response to the Covid-19 pandemic, scientists from African nations and around the world have been willing to share their coronavirus genomes through GISAID.

They have done so because GISAID provides the basic protections that scientists in both developing and developed countries need and demand,ensuring that those who make scientific discoveries are appropriately acknowledged by, and invited to collaborate with, those who use their data.

As Dr Jeremy Kamil, a prominent virologist at LSU Health Shreveport points out, “The sharing mechanism protects not only scientists in developing nations, it also protects scientists in wealthy nations. Those in relatively impoverished areas have witnessed their more well-funded colleagues display the same imperialist tendencies of ‘the have’s’ versus ‘the have-nots.’”

We must not allow history to repeat itself

The rapaciousness of privilege has no bounds. The moral bankruptcy displayed by some has again been laid bare by their “vaccine nationalism,” as they scramble to buy up precious stocks of vaccines while the poorer nations of the world are left to rely on donations, often consisting of vaccines that wealthy nations consider unsafe or suboptimal. There remains a shocking imbalance in the global distribution of vaccines, WHO Director General Dr. Tedros told a news conference recently.

Earlier this year, Dr.Tedros warned that the world was facing a catastrophic moral failure over vaccine inequality, and that approach would be self-defeating because it would encourage hoarding and prolong the pandemic.

At the same time, a group of researchers in wealthy nations are engaged in an orchestrated campaign to manoeuvre poor nations and their fellow researchers into sharing their genomic sequencing data without the basic protections currently provided by the GISAID Initiative.

The sad truth is that far too many who live in privileged surroundings still fail to recognise—or choose to ignore—how these actions perpetrate grave injustices on the Global South, polarizing the global scientific community, whilst harming their own national interests.

“The days of those appropriating resources without fair compensation are over. Countries and researchers share their genomic data through GISAID because they are confident their scientific contributions will be acknowledged and protected, not pilfered,” says Professor Adam Kamradt-Scott, who specializes in global health security and international relations.

“It would be naive to think that, if poor nations allow their data to be used without the protections GISAID affords, we would suddenly see anew era of benevolence emerge among wealthy nations using that data. If we ignore history, we will be doomed to repeat it.”

African nations have made great strides in developing data-collection infrastructure, and acquiring the tools and technology to generate our own outbreak data. We must continue to build on these developments, and reject all efforts to make us dependent on wealthy donors.

Yes—we must continue to share data openly, transparently, and rapidly in order to combat this pandemic and save lives. But we must do so on the basis of mutual respect and on equitable terms, and ensure that those who do share data are not taken advantage of again.

* GISAID is a global science initiative and primary source established in 2008 that provides open-access to genomic data of influenza viruses and the coronavirus responsible for the COVID-19 pandemic.

** The views expressed here are not necessarily those of Independent Media and IOL.

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Covid-19Vaccine