By Ciara Staunton and Deborah Mascalzoni
COVID-19 demonstrated the interconnectedness of the world and that our collective protection and well-being is contingent on our individual response. The importance of solidarity and acting in the public interest became key messages in public health, as too were these principles justified as the basis for data-sharing across borders. Accessing this data was critical and its timely access to this data was essential in research for the much-needed new vaccines.
Solidarity can be understood as the commitment to carry costs to assist others. In the same way that we were told to keep away from loved ones (the cost) to stop the spread of the virus (to assist others), individuals were encouraged to share their data with researchers and in turn researchers were encouraged to share their data with other researchers (the cost) to develop vaccines (to assist) for the global collective benefit (others). The response was remarkable. Data sharing became the default (the cost), vaccines were rapidly developed (to assist), but herein the solidarity pathway stopped. Access was (and still is) largely driven by national and private interests rather than the global collective benefit.
It is clear from this pandemic that the principles of solidarity and the public interest can help drive the data sharing needed for the quick development of vaccines. Data sharing and data access has thus unsurprisingly been called to be included as part of an international pandemic treaty. However, there is not universal support for data-sharing even in a pandemic, in part due to the issue of benefit. In principle, solidarity and the public interest are principles that should guide a pandemic response, but we have seen with COVID-19 that unless these principles are embedded into legally enforceable conditions that clearly dictate benefit, they are not the basis on which to share data. Data sharing in this pandemic has created an imbalance between the values that underpinned data sharing and the values that drove benefit. This is unethical, inequitable, but also creates an environment in which variants can more readily emerge, potentially wasting the global effort to date. A threat such as this pandemic can only be solved as a global response.
Data sharing and global health in a pandemic must be seen as a common that should be regulated and protected. Only a legally enforceable framework can ensure that solidarity is matched with reciprocity that is in the global public interest.
So where to begin?
There is a plethora of regulations, legislative frameworks, consortium policies, and other data governance frameworks already in existence that identify key principles to govern data sharing. However, they were not developed for when there is need for immediate and collective global benefit. Furthermore, these rules and policies have largely been driven by high income countries (HICs) that serve a neoliberal agenda where access to healthcare is generally provided. This approach to data sharing fails to consider the reluctance of many researchers to unrestricted data sharing that has been criticized as displaying a neo-colonial mentality. There is a double standard in the commodification of data: there is the expectation that data will be freely given, but that researchers from HICs who have the technology (technology that is often non-existent in resource limited settings) to process the data are the ones to receive property rights on the resulting outputs. A first step in developing legally enforceable rules is the decolonization of the conversation on data sharing, that is not based on unrestricted open access to data whereby data producers relinquish all rights to the data. The interests that data sharing currently serves must be recognized and the barriers to equitable data sharing unpacked. It is only then that rules and principles that embed solidarity and the public interest into data sharing practices during a pandemic can emerge.
The next step is identifying the process for developing these rules.
The World Health Organization (WHO) is the international agency with the responsibility for public health. It already convenes Member States each year at the World Health Assembly to decide, amongst other, key policies. It has developed a Global Strategy on Digital Health, recently established the WHO Science Council and has proved itself capable of issuing recommendations on challenging and controversial topics such as human genome editing. The WHO therefore already has the systems in place to facilitate the discussion on data sharing rules and could be the appropriate forum in which to develop a framework.
Data sharing rules without accountability mechanisms are pointless, so a third key step in this process is the identification of a body responsible for enforcement of these rules.
Although the WHO may be the moral voice of reason, it may not be the appropriate body. Throughout COVID-19 the WHO’s calls for equity and global solidarity in the distribution of vaccines were ignored. We agree with the Independent Panel that the governance of the WHO must be strengthened, but the process will take time and the necessary political will may be lacking. Individual states, however, have the legal power to ensure compliance, but they have proven themselves in COVID-19 to lack the moral conscience to think beyond national interests.
Therefore, there is a need to consider an appropriate body that emerges from this conversation on an agreed set of rules on international data sharing. It will need to be a partnership that is free from pre-existing rules on data sharing for global health, has equal geographical participation that involves individual countries, but also scientific organizations and funders of science. The Access to Covid-19 Accelerator (ACT-A) is a model that could be adopted. It is premised on equitable access to COVID-19 tests, treatments and vaccines, and its data governance framework requires the equitable access to data. What it currently lacks is the power to hold those involved with data sharing to account. Any new partnership must have this power to ensure that the solidarity pathway is followed from data collection to data sharing, and ultimately access to benefits from data sharing.
Ciara Staunton is a Senior Researcher at the Institute for Biomedicine, Eurac Research and an Honorary Research Associate, Faculty of Medicine and Health Sciences, University of Cape Town.
Deborah Mascalzoni is the ELSI research group leader at the Institute for Biomedicine, Eurac Research in Italy, senior Researcher at Uppsala University , Centre for Research Ethics and Bioethics and academic affiliated at Helex OXFORD.