DNA data and Indigenous rights: Tracing genetic exploitation

Is it possible to trace a single genetic sequence used in geothermal research and experimental industrial product development to the geyser fields of Rotorua on Maori territory? How can Indigenous communities be certain that they will be compensated for the commercialisation of genetic information that is sourced from their territories? And what happens when a genetic product is synthesised from multiple sequences and fragments: one from a forest in Guinea, one from a Peruvian highland and one from the coast of Kiribati?

These are the very questions that will be debated at the UN Biodiversity Conference in Cali, Colombia this October. With a particular focus on conservation technology policy and financing, COP16 will address the ways in which data sovereignty and data justice intersect with conservation genomics. 

Conservation genomics is the collection and analysis of genetic information from flora and fauna for the purposes of conservation. But the lines between conservation and other sectors like pathogen studies for healthcare, wildlife population studies to assess the impacts of climate change and plant studies to address food security and develop commercial agritech aren’t always clear. 

Scientists depend on genebanks in order to store and study genomic sequence data known as digital sequencing information (DSI), which includes details of an organism’s DNA and RNA. Databases like those maintained by the International Nucleotide Sequence Database Collaboration (INSDC), and the U.K.’s Biobank form the backbone of bioinformatics, storing and allowing scientists to duplicate and synthesise genetic sequences.

In Cali, Indigenous peoples and local communities (IPLCs) will be fighting to ensure their rights and agency are protected in emerging policies around conservation genomics. This includes ensuring they are not left out of access to monetary and non-monetary benefits obtained from the commercialisation of genetic resources originating in their territories.

The Convention on Biological Diversity (CBD) is developing multilateral mechanism for benefit-sharing from the use of digital sequencing information (DSI) on genetic resources. Policy-makers are debating the access and structure of this multilateral mechanism, which is estimated to cost around USD 250 million.

It is still being determined whether the fund will be primarily dependent on state or private sector funding, and how monetary benefits will be dispersed, but there are currently no policy frameworks under the CBD that obligate sharing benefits from the use of DSI, leaving critics viewing the current negotiations for an agreement as weak. 

Both in and outside of the CBD forum, Indigenous nations and communities are fighting for the recognition of their intellectual property rights, inclusion in conservation genomics research and governance, and meaningful participation in decision-making in the allocation of project funding that will be dispersed through the multilateral mechanism.

Non-monetary benefit-sharing from the use of DSI through capacity development can be critical to empowering Indigenous communities to store, manage and access their own genetic resources through self-governed biobanks like the Native BioData Consortium in Eagle Butte, South Dakota.

Many communities remain dependent on colonial nations and institutions for the storage and repatriation of genetic samples. The Seychelles Natural History Museum, for example, has to store genetic samples at a partnered institution on a long-term loan because the East African nation lacks its own infrastructure.

Tracing colonialism and exploitation in DSI

It’s easy to picture exploitation along a value chain in the fashion industry than it is to trace human and environmental rights violations in the use of a single genetic sequence. A t-shirt label can give an idea of a product’s origins and the origins of its fibres. Exploitation and abuse follow visible paths from the drought-inducing cotton fields of Uzbekistan, to the polluted wastewater of Malaysian textile factories, to manufacturing sweatshops in China, to the outlet stores in Montreal’s sprawling suburbs. 

When it comes to genetic resources, or digital sequencing information (DSI), exploitation is much harder to trace. After all, DNA and rNA are invisible to the human eye and conservation genomics is a realm of data science that can seem esoteric when the complexity of life is abstracted into letters on a screen that are far removed from their origins in tropical rainforests and savanna biomes.

Tracing becomes more complicated when multiple sequences of genetic information are synthesiaed into a single product or when genetic resources are created with artificial intelligence (AI). Tracking the origins of multiple sequences in a single synthesised genetic product can mean paying dues to multiple communities.

Despite being derived from a genetic resource in an Indigenous territory, the engineered nature of a synthesised genetic sequence can provide a loophole for states and corporations to exploit, depriving communities of benefits because DSI users aren’t technically using an original genetic resource.

The CBD Alliance, a network of civil society organisations, has called for clear pathways for transparency and accountability in the use of genetic resources obtained in Indigenous territories. 

In a global letter on inequitable DSI extraction, the Alliance calls out the CBD for not suggesting any measures to hold public databases accountable for ethical compliance.

Criticising the non-obligatory approach currently shaping the agreement on benefit-sharing, the Alliance writes that the CBD is "inadvertently backing the very same DSI sharing practices that have for decades been instrumental in undermining the rights of the country of origin of genetic resources, indigenous peoples and local communities, peasants, small scale farmers or food producers."

Despite the frameworks set out through existing international laws governing genetic resources, it’s still up to individual states to ensure that national legislation protects Indigenous status and territorial rights.

The Cartagena and Nagoya Protocols are international laws that govern the collection and trade of genetic resources. Cartagena addresses the handling, use and international trade of living modified organisms (LMOs) that result from biotechnology. The Nagoya in particular obligates free prior informed consent from Indigenous communities before collecting genetic samples, and protects the rights of Indigenous communities to access genetic resources to which they have established rights.

Both, however, are concerned with living modified organisms (LMO), rather than laying out overarching laws for DSI more broadly. 

In light of this, Indigenous communities are using the CBD platform to call for national biosafety frameworks that are strong and equitable across conservation and other sectors that depend on DSI. This includes clinical health research where unethical practices related to the collection of Indigenous genetic information and have been common.

This past September, the TRɄA World Summit on Traditional Knowledge related to Biodiversity called for nations to improve their implementation of the Nagoya Protocol through the use of Indigenous protocols laid out in the Mo’otz Kuxtal Guidelines that informs laws on free, prior and informed consent, and the Tkarihwaié Code of Ethical Conduct.

The Mo’otz Kuxtal guidelines in particular emphasise the "temporary use" of traditional knowledge for the purpose for which consent was granted. The precision of this terminology is critical to ensuring accountability for the appropriation of Indigenous genetic resources and biotechnologies that were intended for conservation purposes. 

Meaningful participation

This ethical conduct includes the right to free, prior and informed consent that is repeatedly violated through colonial practices of "parachute science," wherein researchers don’t meaningfully collaborate with local communities, and biopiracy wherein genetic information is extracted without consent or compensation. 

The solicitation of consent is often seen as an empty gesture, presuming that Indigenous communities will grant access to territories, resources and knowledge.

"Thank you for your opinion we’re going to do it anyway," as delegates from the International Indigenous Forum on Biodiversity (IIFB) described during frustrated negotiations in Montreal.

Speaking in Montreal in August, Kuni Albert of the Assembly of First Nations delivered a statement on behalf of the IIFB and the Indigenous Women’s Biodiversity Network (IWBN).

Referring to the Nagoya Protocol, she said, "genetic resources from Indigenous territories, lands and waters should never be collected, sequenced, or uploaded to any database without their Free, Prior and Informed Consent; or used from existing databases without respect for rights and interests of IPLCs."

As of June 2024, the Global Environment Facility has approved over USD 730 million in funding for “nature protection and renewal” projects. Albert also emphasised the inclusion of Indigenous peoples in decision-making on the direct distribution of funds from the global fund and in determining priorities for their use, rather than being relegated to observer status.

A critical step to protect Indigenous governance over genetic resources was taken earlier this summer, and will help shape the negotiations around the multilateral mechanism in Cali. In May 2024, a historic treaty was adopted by 176 member countries, the Treaty on Intellectual Property, Genetic Resources, and Traditional Knowledge. 

The agreement under the World Intellectual Property Organization (WIPO) protects traditional Indigenous knowledge and genetic resources, and will establish an international law that mandates the disclosure in patent applications of the use of Indigenous genetic resources or knowledge in the creation of the product. 

The treaty is significant in that it acknowledges the intersection of intellectual property, genetic resources and traditional knowledge. It will also impact the use of some traditional biotechnologies, where Indigenous knowledge is used to develop technologies that enable conservation and environmental restoration. 

The disclosure stipulated by WIPO needs to be built into the data infrastructure of conservation genomics. Currently, gene-banks do not make it clear if a genetic sequence came from Indigenous territory or if synthesised products have used sequences or biotechnologies originating from Indigenous communities.

Scientists and states have argued that the use of meta-data and certificates in gene-banks can enable greater transparency for tracing the source of a genetic sequence. Something as simple as a location tag in a database can act like a t-shirt label, helping trace the pathway of a sequence from a rainforest under Indigenous stewardship to a commercial product that has been produced using that sequence.

Blockchain genomics have also been proposed as a means to decentralise control over genetic resources and maintain Indigenous sovereignty over genomic data. Blockchain models can build in consent protocols into the access and use of DSI in Indigenous biobanks. 

The UNESCO Recommendation on Open Science allows for some restrictions to protect intellectual property rights, threatened or endangered species and Indigenous knowledge. Treating genetic resources as cultural heritage is one way of decolonising the regulation of genetic resources and encouraging the co-design of participatory systems for research.

Negotiations in Montréal left many questions unanswered regarding the traceability of the origins of genetic sequences and accountability for ethical compliance with Indigenous sovereignty and rights to benefits from the use of DSI. Will COP16 go deeper than just reporting the use of Indigenous resources and earmarking a percentage of profits from the commercialisation of genetic sequences, or simply reinforce the status quo of genomics colonialism? 

Image by Asso Myron.