COP 16: How can all countries benefit from genomic data sharing?

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Step outside Cali’s Centro de Eventos Valle del Pacífico and you're greeted by a breathtaking panorama of forested hills—a fitting backdrop for the bustling venue of COP 16, the United Nations biodiversity conference. Indeed, Colombia is celebrated as one of the most biodiverse countries on Earth, home to nearly 10 per cent of the planet’s biodiversity.

The United Nations biodiversity “COP” is the Conference of the Parties where governments from all global regions get together to agree on solutions for conserving, sustainably using and sharing benefits from biodiversity. The agenda at COP 16 was broad, with governments negotiating a framework for monitoring progress towards biodiversity targets, strategies for capacity building and development, and arrangements for indigenous representation in decision-making processes, among other topics. Negotiations were often tense and sometimes ran late into the night, as all countries must agree to all clauses of a decision before it is implemented. In other words, “nothing is agreed until everything is agreed”. Considering every single country except the USA and the Vatican are part of the process, negotiations were far from straightforward.

A particularly tricky question on the agenda was how to ensure that benefits arising from research and development that uses “Digital Sequence Information” are shared globally and equitably. These benefits might include profits from the sale of pharmaceutical products or knowledge outputs from basic scientific research. Digital Sequence Information in this context refers to nature-related data - such as the sequenced genetic codes of animals, plants and microorganisms - that is shared freely to all in open scientific databases.

Thanks largely to the decreasing costs of genome sequencing, the volume of data shared in open access databases has increased significantly over the past decade. As of November 2024, the International Nucleotide Sequence Database Collaboration, an open repository of Digital Sequence Information, contained 4.76 billion assembled sequences. That’s a staggering seven times more than ten years ago, when the repository contained 651.5 million assembled sequences.

Researchers at the Sanger Institute and around the world routinely generate and share such data, and use data that other researchers have shared, often at massive scale. This practice is fundamental to understanding the spread of infectious disease and global biodiversity trends. For example, the Global Pneumococcal Sequencing (GPS) Project, a global collaboration including Sanger and over 50 international project partners, shares and uses Digital Sequence Information at large-scale from across the world to better understand the biology and epidemiology of Streptococcus pneumoniae bacteria.

This bacteria is the leading vaccine-preventable cause of pneumonia and meningitis in young children, and current vaccine designs tend to be tailored to types of the bacteria that are most relevant to a Global North context. To address this, the GPS Project has used insights from Digital Sequence Information to inform vaccine manufacturers on new formulations which can be targeted to previously overlooked geographic locations.

Ensuring that scientific data is freely, openly and globally shared among researchers is crucial as it maximises the usefulness of data, helps to validate research findings, and facilitates global collaborations. However, power imbalances in genomics research mean that research agendas are often dominated by Global North scientists and funders, research benefits are concentrated in places like Europe or the United States and global inequities in research capacities continue to grow. As a result, the current open science ecosystem, though an asset for all, disproportionately benefits scientists working in high-resource settings.

At the Sanger Institute, we recognize these power imbalances and actively work to promote fairness and mutual benefit in our research collaborations, while acknowledging there is always more to learn and improve upon. Part of this involves dedicating time and funds to supporting the development of project partners’ research capacity according to their specific needs and priorities. However, these activities only go so far in tackling power imbalances, which often stem from deep global economic inequities that can only be addressed by governments. So at COP 16, governments were faced with a dilemma and an opportunity: how can Digital Sequence Information continue to be shared freely among the global research community whilst promoting the benefit sharing needed to meaningfully redistribute power in global science?

The stakes are high. Without an international solution that earns the trust of all countries, not only do we risk missing this rare opportunity, but countries may - understandably - turn to domestic measures to restrict and control the use of nature-based data that originates from within their borders. This could lead to a fragmented scientific data ecosystem, reducing the ability of researchers, including the Sanger Institute and its partners, and policy makers to understand and tackle global challenges like infectious disease spread and biodiversity loss.

Of course, such a complex problem was never going to be solved from scratch in the two weeks set aside for COP 16. Rather, the debate on Digital Sequence Information has been ongoing for several years. Throughout this process, the Sanger Institute has been working with research and policy partners around the world to ensure scientific perspectives have been included in the discussions towards a policy solution on benefit sharing from Digital Sequence Information. This has involved taking part in various advisory groups and knowledge exchange meetings, working with Wellcome to engage with key stakeholders, showcasing the impact of genomics research and the potential impacts of policy options to the UK Government, and working with the global DSI Scientific Network to support engagement with governments from around the world.

These efforts have been met with enthusiasm by governments, who have largely welcomed the voices of those scientific communities who generate, share and use Digital Sequence Information, as well as other perspectives such as those of indigenous peoples and local communities. At COP 16, these collaborative efforts culminated in the creation of a mechanism that has the potential to both promote the sharing of benefits from the use of Digital Sequence Information and support global genomics research.

Governments agreed that all users of Digital Sequence Information should share monetary and non-monetary benefits arising from its use via a global system to support the conservation and sustainable use of biodiversity. Companies from sectors that use nature-related data for commercial purposes, such as the pharmaceutical sector or the biotech sector, are expected to contribute a portion of their revenue or profits to a global fund, named the ‘Cali fund’. Non-commercial organisations like the Sanger Institute are exempt, as these institutes generate - and should share - non-monetary benefits, rather than money directly.

Companies will only be expected to contribute if they are above a certain size threshold, and these thresholds will be kept under review, which will be important to make sure the innovation from small biotech and life sciences companies is not stifled. These companies are key to translating the latest scientific knowledge into new societal benefits and likely do not have the resources to contribute to the fund.

To our delight, as well as supporting the conservation and sustainable use of biodiversity, governments agreed that the money from the Cali fund will contribute to scientific research on biodiversity, benefit indigenous peoples and local communities, and support scientific capacity development.

However, the journey to this agreement was contentious and lengthy, partly leading to the whole COP 16 process overrunning considerably. Negotiators left mid-discussion to catch flights home, and in the end there weren’t enough representatives in the room to agree on some other important COP 16 decisions.

One reason why the negotiations on Digital Sequence Information were so challenging was a passionate disagreement on how open scientific databases should be governed. Some countries wanted strict and burdensome obligations to control the flow of data into and out of these databases, whereas other governments, as well as many in the scientific community, argued that preserving the openness of such processes was crucial for research and innovation. In particular, global genomics collaborations, including those that the Sanger Institute participates in, rely on the flow of data across the scientific community.

After lengthy debate and compromise, I was pleased that countries agreed to protect the openness of scientific databases whilst asking database operators to encourage good scientific practice through a number of steps. These include making information about the benefit sharing mechanism and its obligations available to scientists who use the databases, and requiring scientists to provide country-of-origin information and, where appropriate, an indication of the use of traditional knowledge when uploading genomic data to these databases.

Due to these challenging discussions, there was little time at COP 16 to work through how the scientific community, including non-commercial organisations like the Sanger Institute, should share non-monetary benefits. I was happy to see that countries acknowledged that this should include scientific capacity building, which has the potential to support countries around the world to further engage in genomics and set research agendas based on their priorities for science and biodiversity conservation. Countries also agreed that non-monetary benefit sharing should support the self-identified needs of indigenous peoples and local communities, who play a crucial role in protecting nature and biodiversity. Regrettably, no details on the precise mechanics for sharing non-monetary benefits were agreed, other than developing a clearing house for knowledge exchange and the voluntary reporting of ongoing relevant activities.

In my view, many unanswered questions remain on non-monetary benefit sharing, which might include initiatives like training, fellowships or global collaborations. How can we measure its impact and cost? How should non-monetary benefit sharing relate to the Cali fund? How can the mechanism enhance, rather than interfere with, current efforts? All these questions and more need to be explored, and it is important that the views of scientists from across the world are part of this conversation.

The agreement on a benefit sharing framework for Digital Sequence Information at COP 16 marks a pivotal moment for global genomics and biodiversity conservation. However, the work has only just begun. As the decision is implemented, it is essential that companies worldwide contribute meaningfully to the Cali fund, and governments further develop and agree on a non-monetary benefit sharing system that fosters scientific capacity building.

Only then will we have a chance to build trust between communities and countries across continents and income levels, protect open access to genomic data that is so vital for scientific discovery and global collaboration, and support all countries to develop the expertise and infrastructure to shape, lead and sustain genomics research endeavours over the long term. Through these collective efforts together, we can fully understand and address the urgent global issues of biodiversity loss and infectious disease.