Data Solidarity in the Commons
Open Science and public health data are public goods to be used for the global common good, writes Collective member Mary FE Ebeling. They should not be used for extractive purposes, or to punish those brave enough to share.
Photo: Getty images
At a 1996 summit held in Bermuda, the Human Genome Project organizers established guidelines, dubbed the Bermuda Principles, for the rapid sharing of genomic data to public databases. Departing from established scientific norms where experimental genetic data, especially those which pertain to infectious diseases, are published alongside the release of a study, organizers agreed that researchers would upload to public databases a new DNA sequence within 24 hours of discovery.
The Bermuda Principles are at the core of Open Science that understands public health data as a public good to be used in the interests of the global community. Genomic data evidence of newly detected variants of infectious diseases are understood as Nobel Prize-winning economist Elinor Ostrom understood natural resources to be; that is, a commonly held good, that should be managed and governed collectively as a part of the commonweal and in solidarity to address endemic inequities.
Understanding health data as a public good that serves as part of the global commons and is used in solidarity stands in stark contrast to the spirit of the transnational data extractive industries, such as Alphabet (Google), Meta (Facebook), or global financial services companies (such as Experian plc or MasterCard). These companies understand the value of health data as a privately held asset, not to be shared but to generate share-holder, financial value. The global data extractive industry’s core business model is to enclose health data into a commodity-innovation framework where data that may once had been commonly held, are “enclosed” within policies like TRIPS, intellectual property rights and patents. When these data extractors do share data, they do so for a price, or as a “charitable” act through their philanthropic arms. But solidarity, as the rallying call goes, is not charity.
Open Science and health data public goods could be seen as part of the larger movement towards data solidarity, where life-saving data are shared for the common good, in solidarity, to address health inequities and protect lives.
For example, in policy documents by the World Health Organisation’s (WHO) World Health Data Hub initiative, a new program to foster collective governance of public health data globally, the WHO understands health data as a global public good that must contribute to public value where “data informs individuals, benefits communities, and enhances economies”, and it should be used “to reduce inequalities and highlight data disparities hidden by aggregation or due to lack of data collection” or data sharing.
In an act of data solidarity, on November 23, 2021, scientists volunteering their time in South Africa and Botswana detected a fifth variant of the SARS-CoV-2 coronavirus, dubbed B.1.1.529 or Omicron, in pandemic surveillance data. They promptly shared the DNA sequences of Omicron to the global community. While these scientists were first to share this data, it doesn’t necessarily mean that Omicron has been endemic in southern Africa, a region that is still struggling with the global vaccine inequities and with trying to raise Covid-19 vaccination rates above the current 25 percent. And within two days of this act of data solidarity, the global community responded by imposing travel restrictions on countries in Southern Africa. As Jeffery Barrett, lead on the Covid-19 genomics initiative at the Wellcome Sanger Institute notes, the global response to isolate the region in the face of such a brave and heroic act, goes against the principles of Open Science and data solidarity.
About this blog
A blog written by members of The Political Determinants of Health Collective, where they discuss how their work contributes to furthering knowledge and research in this area.