Digital Sequence Information Poses Risks to Indigenous Peoples’ Rights and Biodiversity

10 Oktober 2024
Digital Sequence Information Poses Risks to Indigenous Peoples’ Rights and Biodiversity
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KatieLee Riddle descends from the Iwi of Rongowhakaata on the East Coast of New Zealand’s North Island. She is a Māori researcher at Te Kotahi Research Institute, an interdisciplinary research hub based at the University of Waikato in Hamilton, New Zealand that specializes in Māori-focused initiatives, research, and capacity-building to support the aspirations of Iwi, Māori, and Indigenous communities. Over the past four years, Riddle has also collaborated closely with Local Contexts, a global initiative that supports Indigenous communities with tools that can reassert cultural authority in heritage collections and data. Her work focuses on the intersection of science, intellectual property, Traditional Knowledge, data sovereignty, and benefit sharing, helping to ensure that Indigenous voices and perspectives are at the forefront of these critical global discussions. Cultural Survival recently spoke with Riddle ahead of the upcoming Convention of Biological Diversity Conference of Parties (CBD COP16) in Cali, Colombia. 

Cultural Survival: How did you get into this line of work? 

KatieLee Riddle: In recent years, the regulation of Digital Sequence Information (DSI) has emerged as a growing area of international focus. With my interdisciplinary background, I became interested in understanding how DSI fits into broader global discussions, particularly concerning Indigenous rights and interests. This curiosity led me to explore DSI further, culminating in my participation at the United Nations Convention on Biological Diversity’s 15th Conference of the Parties. At this pivotal event, substantive negotiations around benefit-sharing mechanisms for DSI were initiated. Since then, I have continued to be closely involved in these discussions through my work with the International Indigenous Forum on Biodiversity, where I contribute to the working group on DSI.

CS: What is Digital Sequence Information?

KR: Digital Sequence Information is broadly understood as data derived from genetic resources, including DNA, RNA, and protein sequence information. It represents the non-physical aspects of genetic material, such as the base pairs within a DNA strand. However, there remains no agreed-upon definition of what DSI actually encompasses or excludes.

The term ‘DSI’ itself is considered a placeholder, with no alternative phrasing yet agreed upon by international stakeholders. This lack of a formal definition creates ambiguity around the scope of what is being regulated, leading to a range of interpretations and uncertainty in ongoing discussions around DSI governance.

CS: Why is this a topic that should be of interest to Indigenous Peoples?

KR: Indigenous resources and Traditional Knowledge are often at the heart of genetic research, with DSI playing a pivotal role in these processes. DSI includes data derived from genetic resources such as plants, animals, and microorganisms, many of which are found on Indigenous lands, waters, and territories.

Traditional Knowledge about these genetic resources often informs or inspires research, contributing to the development of intellectual property, products, and services. For Indigenous communities, DSI holds more than just biological data—it represents Traditional Knowledge, cultural heritage, and deep-rooted relationships with particular species. In some instances, Indigenous ancestors and communities have directly influenced these genetic resources, for example through selective breeding, contributing to the dispersal and evolution of species across landscapes.

Indigenous Peoples have long been researchers and innovators, shaping biodiversity through their expertise and interactions with the natural world. This legacy continues today, as Indigenous academics, entrepreneurs, and environmental defenders actively contribute to scientific advancement while upholding their role as guardians of the earth. The unique and vital relationship Indigenous Peoples have with the environment is one that must be respected and protected, especially in the context of modern genetic research and regulation.

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KatieLee Riddle.

CS: What are the governance bodies and agreements regulating DSI?

KR: Multiple international bodies are currently engaged in discussions around the regulation of DSI, though only one formal treaty has been established so far. In June 2023, the United Nations adopted the BBNJ Agreement under the United Nations Convention on the Law of the Sea on the Conservation and Sustainable Use of Marine Biological Diversity of Areas beyond National Jurisdiction. Open for signatures by all States and regional economic integration organizations, this treaty introduces a mechanism for companies conducting research and development using Marine Genetic Resources and DSI derived from them to share benefits fairly and equitably. The agreement is expected to enter into force in the coming years.

Meanwhile, the Convention on Biological Diversity took a significant step forward at COP15 in December 2022, establishing a multilateral benefit-sharing mechanism for the use of DSI on genetic resources. A working group has been intensively developing this mechanism, aiming for its formal adoption at COP16, which will be held in Cali, Colombia starting October 20, 2024.

The Food and Agriculture Organization and the International Treaty on Plant Genetic Resources for Food and Agriculture are also closely monitoring these developments, recognizing DSI as a critical issue that cuts across multiple sectors. There is a growing consensus that benefit-sharing for DSI should be integrated into the Food and Agriculture Organization’s framework, with discussions underway about potentially adopting a specialized approach under the treaty.

In the health sector, the World Health Organization has affirmed that DSI from pathogens is a global public health good, emphasizing the need for rapid, broad, and timely sharing of this information to manage infectious diseases effectively. The Pandemic Influenza Preparedness Framework, designed to improve virus-sharing and enhance access to vaccines and other pandemic-related resources for developing countries, was put to the test during the COVID-19 pandemic. The pandemic highlighted areas requiring further preparedness, including the efficient sharing of DSI on pathogens with pandemic potential.

At the World Intellectual Property Organization, a new Treaty on Intellectual Property, Genetic Resources, and Associated Traditional Knowledge was ratified in May 2024. The treaty mandates that patent applicants must disclose the country of origin of any genetic resources used or, in cases involving Traditional Knowledge, identify the Indigenous Peoples or local communities that provided the knowledge. Although DSI is not yet covered by the treaty due to differing opinions, discussions around transparency and the need for greater disclosure of Indigenous interests in data are gaining momentum.

These ongoing international discussions underscore the increasing recognition of the need to regulate DSI, particularly in relation to benefit-sharing, intellectual property, and global health.

CS: In what ways do current regulations and agreements address or fall short in protecting Indigenous interests in Digital Sequence Information?

KR: Under the Nagoya Protocol, Indigenous People are able to control the use of their genetic resources and associated Traditional Knowledge. However, because Digital Sequence Information is not currently classified as a genetic resource, it occupies a legal grey area. This loophole has created a ‘wild west’ environment where research involving DSI is not subject to the same regulations as genetic resources, leaving Indigenous communities vulnerable.

The use of DSI in research and innovation can lead to significant benefits, including financial gain, the development of new medicines, climate resilient crops, and other advancements. However, when Indigenous Peoples are not consulted or involved in these processes, they are denied their rightful share of these benefits and miss opportunities to generate commercial prospects for their own communities.

To address these challenges, it is essential to establish safeguards that protect Indigenous rights, knowledge, and resources, and to prevent the continuation of colonial practices in research and innovation. As the global focus on biodiversity conservation intensifies in response to climate change, Indigenous Peoples are invaluable partners, holding solutions rooted in Traditional Knowledge. Their expertise in living harmoniously with nature is vital, and recognition of their role as environmental custodians is not only fair but essential for sustainable development.

CS: What challenges or concerns do Indigenous groups face regarding the access and sharing of Digital Sequence Information?

KR: DSI is frequently reused in research, often drawn from existing databases that house genetic data. Many Indigenous genetic resources have already been sequenced and made available in these databases, allowing researchers to use DSI without fully understanding its origins or the associated cultural relationships. Indigenous communities are often unaware that their genetic resources have been used in research, further complicating the issue.

For instance, a researcher may compare a specific DNA strand to others stored in a database to identify similarities or unique characteristics of a species. While the researcher may understand the origins of the specimen they are working with, the origins of DSI in the database may remain unknown or unacknowledged. When research reliant on DSI leads to commercial products, the opportunity for benefit-sharing arises—but uncertainty about who should receive those benefits often remains. This is where mechanisms like those developed through the Convention on Biological Diversity become crucial. They provide legal clarity on who should share benefits, with whom, and at what point in the value chain.

Attribution issues are further compounded by the fact that records about the source of DSI are often incomplete or absent. This can lead to the challenge of appropriately recognizing Indigenous communities or attributing the data to them. However, this norm is beginning to change. Databases are increasingly developing the capacity to incorporate Indigenous attribution, making it possible to record the geographical and cultural origins of genetic data. This shift enhances the usefulness of DSI and promotes responsible data-sharing practices.

The integration of metadata on the origins of DSI within databases offers new opportunities for building relationships, facilitating non-monetary benefit-sharing, and improving data practices. Tools like Local Contexts are also playing a key role, empowering Indigenous communities to reassert sovereignty and cultural authority over their cultural heritage and data, further strengthening the framework for responsible research and benefit-sharing.

CS: How do we address the issues of consent and ownership related to sharing of Indigenous Peoples’ Traditional Knowledge through Digital Sequence Information?

KR: It is common for Indigenous communities to lack ownership over the DSI connected to their genetic resources. Without the legal controls that ownership can provide, tools such as biocultural labels have emerged as a way for Indigenous communities to assert provenance, communicate their permissions for data use, and set protocols for how their data should be managed.

Ensuring that DSI related to Indigenous communities is handled with care requires careful consideration of the systems into which this data is entered, as well as the protocols governing its storage, access, and use. Aligning these processes with community expectations is essential to protecting Indigenous rights and interests.

For Indigenous communities, establishing clear expectations around research and innovation partnerships is crucial. These relationships must be mindful of how they impact Indigenous rights, particularly regarding Traditional Knowledge. Setting clear terms for data collection, storage, and use from the outset is a key strategy for protecting interests in DSI. Additionally, after research projects conclude and DSI is placed in databases for potential reuse, it is vital that Indigenous attribution remains attached to the data, allowing future researchers to build relationships with the relevant communities and engage in ethical research practices.

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CS: What are some examples of how DSI has been, or could be, used in ways that harm Indigenous Peoples, or all society? 

KR: The use of DSI presents significant risks to Indigenous Peoples, particularly when it undermines opportunities for community-driven development and the expansion of Traditional Knowledge. Without clear benefit-sharing obligations, Indigenous communities are often excluded from the financial and developmental gains that result from research and innovation involving their genetic resources and cultural heritage.

DSI also carries the potential to generate harmful narratives about Indigenous Peoples. This includes the misrepresentation of migration histories or the assignment of negative characteristics that conflict with community identities and interests. Such misuse of DSI can perpetuate stereotypes and distort historical understandings.

Another major concern is using DSI to create synthetic versions of existing genetic resources or to engage in gene editing. When such practices occur without Indigenous consent, particularly in relation to species of cultural, spiritual, or ecological significance, the impacts can be profound. Not only do these actions disrespect Indigenous rights, but they can also endanger the genetic integrity of these species within their natural environments. The result is potential harm not only to Indigenous communities, but also to biodiversity.

Addressing these challenges requires robust safeguards ensuring that DSI use respects Indigenous sovereignty and aligns with community interests and cultural relationships.

CS: What are some examples of successful collaborations or initiatives that have effectively involved Indigenous communities in the management and governance of Digital Sequence Information?

KR: A leading example of Indigenous data sovereignty in action is the Native Biodata Consortium, an Indigenous-led nonprofit research institute serving as a biorepository. This initiative focuses on maintaining control over biological samples and associated data at the community level. Through leveraging Indigenous sovereignty, the Consortium works to build capacity, foster trust between communities and data repositories, and develop robust datasets that benefit Indigenous communities. By prioritizing local control, it ensures that research and data management align with Indigenous values and interests.

Genetic resource databases like Manaaki Whenua in New Zealand have been advancing Indigenous data sovereignty by applying Biocultural Labels and Notices to over 700,000 of their records through the Local Contexts platform. This approach allows cultural authority to be asserted over data, even in an open access format, ensuring that Indigenous rights are respected. Manaaki Whenua’s database also includes a feature allowing users to filter data by Indigenous lands, enabling communities to view records related to their territories, lands, and waters.

On a global scale, the Global Biodiversity Information Facility is developing a work plan to integrate Biocultural Labels and Notices from local databases, such as Manaaki Whenua, into its platform. This initiative will enhance transparency and respect for Indigenous data, ensuring that biocultural labels and notices accompany records at an international level, further supporting Indigenous data sovereignty.

CS: How do we address the narrative that genetic resources belong to all humanity and, therefore, no one can claim property rights? 

KR: Countries around the world are increasingly asserting their sovereign rights over the genetic resources found within their borders, often requiring benefit-sharing agreements for research and commercialization activities. This framework ensures that both provider countries and Indigenous Peoples or local communities from whom these genetic resources are sourced receive fair compensation. The Nagoya Protocol to the United Nations Convention on Biological Diversity has established international agreements that govern access to and benefit-sharing from genetic resources. As a result, it is clear under international law that genetic resources do not belong to humanity as a whole.

CS: What mechanisms on benefits sharing are currently being developed, and how do Indigenous Peoples participate in this work?

KR: The Convention on Biological Diversity is nearing the final stages of developing a Multilateral Mechanism aimed at compensating for the use of Digital Sequence Information while also mobilizing new funding to support biodiversity conservation and sustainable use. This mechanism is designed to ensure that the benefits arising from genetic resources are shared fairly and equitably. Decisions regarding the operational framework of this mechanism are expected to be finalized at the upcoming CBD COP16 in October.

Indigenous representation in this decision-making process has been robust and ongoing. The International Indigenous Forum on Biodiversity has formed a dedicated working group comprising Indigenous Peoples from around the globe, focused on advocating for Indigenous rights and interests related to DSI. Over the past two years, the group has held regular meetings to draft text suggestions, lobby for inclusion, and voice concerns within CBD discussions.

Members of the working group plan to attend COP16, where we hope to see our efforts reflected in the finalized mechanism. The anticipated outcomes of this meeting could mark a significant step forward in recognizing and addressing the rights of Indigenous communities in relation to DSI and the broader implications of genetic resource use.

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CS: A new DSI Fund is being developed. How will it work? Will it benefit Indigenous Peoples directly?

KR: The forthcoming decisions at COP16 will address several critical aims of the proposed multilateral mechanism. Key objectives of this mechanism include generating both monetary and non-monetary benefits, providing legal certainty for the science and innovation sectors, enhancing efficiency in research and innovation, ensuring open access to data, and aligning with other international frameworks. Crucially, it also aims to respect and consider the rights and interests of Indigenous Peoples and local communities.

During COP16, discussions will revolve around pivotal issues related to the Multilateral Mechanism and its associated global fund. Questions on the table include who will be obliged to compensate for the use of DSI, the triggers for such payments, the governance structure of the fund, and the prioritization and distribution of its resources. While various options are currently under debate, no definitive decisions have yet been established.

Initially, Indigenous Peoples and local communities were anticipated to be the primary beneficiaries of this fund. However, the focus has since expanded to include broader support for activities that promote biodiversity protection and sustainable use, as well as the implementation of national biodiversity strategies and action plans.

Many biodiversity conservation and restoration initiatives are already undertaken by Indigenous communities without external funding, as these efforts align with their roles as stewards of the earth. It is hoped that the new fund will empower Indigenous communities, enhance their resources, and enable them to carry out these vital activities more effectively. If the fund facilitates direct access for Indigenous Peoples and local communities to funding—potentially on a project-by-project basis—it could significantly boost their capacity to contribute to biodiversity conservation efforts.

CS: How can the incorporation of Indigenous perspectives in policy-making help address issues of sovereignty and equity in the use of digital sequence data?

KR: Incorporating Indigenous perspectives into policy-making is essential for recognizing the rights and interests of Indigenous Peoples concerning their Traditional Knowledge and genetic resources. Such inclusion not only safeguards autonomy and cultural authority, but also enhances governance surrounding data use.

Active participation from Indigenous Peoples can lead to more equitable benefit-sharing practices, ensuring that decisions reflect the needs and values of those most affected. Furthermore, Indigenous perspectives contribute to the development and strengthening of policy frameworks at both international and institutional levels.

The unique insights offered by Indigenous voices enrich the research and innovation landscape, fostering a more diverse and robust approach to addressing contemporary challenges. By integrating these perspectives, policymakers can create more inclusive and effective strategies that respect Indigenous rights and promote sustainable practices.

CS: How can researchers and policymakers better engage and collaborate with Indigenous communities to ensure their rights and interests are respected in the context of Digital Sequence Information?

KR: To enhance engagement with Indigenous communities regarding DSI, it is imperative for researchers and policymakers to ensure that Indigenous communities are meaningfully included in the decision-making processes. This involvement must prioritize the principles of Free, Prior and Informed Consent, particularly concerning the sequencing of their genetic resources.

Co-designing policies and research initiatives fosters meaningful relationships that can drive significant changes in the norms of data sciences, particularly when led by Indigenous Peoples. Incorporating Indigenous Data Sovereignty principles, such as the CARE [Collective benefit, Authority to control, Responsibility, and Ethics] framework, is essential for effective governance of DSI.

 

All photos courtesy of KatieLee Riddle.