According to IPBES, “Indigenous Peoples and Local Communities (IPLCs) are, typically, ethnic groups who are descended from and identify with the original inhabitants of a given region, in contrast to groups that have settled, occupied or colonized the area more recently” 1. Approximately 43.5 million km2 of land and associated inland waters (spanning 132 countries) are owned or governed by IPLCs representing ~one billion people 2. IPLC lands traverse ~75% of Earth’s 847 terrestrial ecoregions - 91% of which have been reported as being in good-moderate ecological condition. This equates to 42% of the total global land categorized as in “good ecological condition” 3. Further, IPLCs continue to manage 70% of the seeds used around the world today 2, and it is also important to both note and promote the contributions of IPLC women specifically to the transmission of Traditional Knowledge and to the sustainable use of biodiversity 4–6. These statistics highlight the value and impact IPLCs’ place-based knowledge, intergenerational practices and intentional custodianship have, and continue to make, to the conservation and sustainable use of global biodiversity and in-situ ecosystem health 7–9,10. Many of these intergenerational systems precede those of westernized scientific approaches such as genomics.
The plurality of knowledge and diversity of perspectives offered across IPLCs is fundamental to achieving the mission to sequence all of life. There is therefore a need to prioritize IPLC participation and recognition across the biodiversity research enterprise and to build partnerships that are grounded in proactive, open, transparent, and accessible communication. Although open data is an important component of maximizing the scientific outcomes possible from biodiversity reference genomes, the fraught and ongoing history of extraction of biological resources and the Traditional Knowledge associated to genetics resources (aTK) from the lands of IPLCs cannot, and must not be ignored 11–13. Moving forward and as the field of biodiversity genomics expands and grows, mainstreaming a culture where IPLCs’ authority to inform the stewardship of samples, data and knowledge obtained within their jurisdiction on their own terms is fundamental 14. In recognition of sovereignty, it is of equal importance to respect IPLCs’ right to decline or defer participation in any research project if they so choose. In the words of Dr Alex Brown, a Professor of Indigenous Genomics from ANU, “We can only proceed at the speed of trust”.
Here we offer a framework, grounded in environmental justice and the CARE principles15, for biodiversity genomic researchers, projects, and initiatives to support and promote the building of trustworthy and sustainable partnerships with IPLCs. We also provide minimum recommendations (Supplementary Section 1) on how to access, utilize, preserve, handle, share, analyze and communicate samples, genomics data and associated aTK obtained from and in partnership with IPLCs across the data lifecycle (Figure 1,2). These recommendations aim to put into practice existing local, national, and international legal instruments that promote the protection of IPLC rights including the Convention on Biological Diversity’s Nagoya Protocol 16, United Nations Declaration of Indigenous Peoples (UNDRIP)17, United Nations Charter18, International covenant on economic, social and cultural rights19, International covenant on civil and political rights 20 and Vienna Declaration and Programme of Action21. At the time of developing this framework, Indigenous Peoples have explicitly codified internationally accepted rights; however, the recommendations provided within this manuscript align with the language of the CBD and Nagoya Protocol which refer to Indigenous Peoples and Local Communities. The biodiversity genomic data lifecycle includes six steps: 1) Proactive engagement and partnership building, 2) Access, utilization, and benefit-sharing, 3) Sample collection and processing, 4) Ex-situ storage, 5) Data, 6) Communication and dissemination. Our framework provides holistic guidance at each step of the data life cycle on why and how to recognize IPLC rights and interests - supporting and promoting willing IPLCs’ respectful, and systemic inclusion (Figure 2). Whilst employing the framework, it is important to continuously reflect on the ethical practices and research processes being employed in order to keep human and societal concerns close to the technical aspects of the research projects, the day-to-day work of the researchers and overall project design decisions22. Figure 1 outlines a method for continuous ethical reflection using four conceptual lenses: narrative, socio-technological systems, positionality, and power23. Each step has a case study associated to highlight a real-world example of the recommendations and framework (Box 1).
The framework assumes that the biodiversity researcher, project, or initiative has already identified that a species of interest has a cultural, spiritual, or economical value to an IPLC; however, in many cases researchers, projects and initiatives may not be aware of this. To maximize the utility of this framework, prior to initiating projects, researchers should do their due diligence to identify whether the species to be accessed and used falls within the jurisdiction of an IPLC and if any aTK will be used. This way, IPLCs’ have an opportunity to participate in the project and its design as outlined in the first step of the data life cycle.
Box 1: Case Studies relevant to each section found in Supplementary Information Section 2.
|
Case Study 1.1. The Canadian North Helicobacter pylori Working Group
Case Study 2.1. Maya ICBG Project
Case Study 2.2. Benefit-Sharing and Rooibos Tea
Case Study 2.3. Intellectual Property and Basmati Rice
Case Study 3.1. Bilberry Metadata Collection
Case Study 3.1. Taxonomic Nomenclature Systems
Case Study 3.2. Biobanking “For Natives, by Natives”
Case Study 5.1. Genomics Aotearoa Data Repository
Case Study 6.1. A CONSERVCOM Project’s Communication Plan
|
Step 1: Proactive Engagement and Partnership Building
Openness and transparency are key for success when grounding partnerships between research projects and IPLCs. Whether it is a reference genome project using newly collected samples, previously collected samples, or revisiting archived samples or genomes obtained from IPLCs or within IPLC jurisdiction, it is important to initiate discussions with IPLC’s in a manner consistent with customary laws and legislations. Proactively reconciling differences in values, cultures, beliefs, knowledge systems and worldviews that may exist between researchers and IPLCs is critical for inclusive and equitable collaboration. Establishing ethical spaces to explore how differences can co-exist with mutual respect as well as maintaining research integrity in these partnerships requires careful planning.
The diversity across global IPLCs requires the nature and extent of engagement to be tailored to the context and will depend upon the IPLC and project exploring a mutual partnership. It is recommended that researchers or projects seeking engagement first invest time into obtaining an understanding of the potential IPLC partner, including socioeconomic factors such as gender, age, wealth, education, race and ethnicity and others that can determine peoples’ access to, decisions about and benefits from land and biological resources 4. There are many publicly available resources to support a researcher's journey toward cultural humility 24,5 e.g., the e-learning modules provided by the NGO Natural Justice (https://naturaljustice.org/e-learning-modules/), and a proactive review of the literature can establish whether the IPLC has issued guidance for research engagement. If not, guidance issued by other IPLCs may provide useful information to support an initial engagement.
It is recommended that after a responsible level of competency has been built by the research team and as early as possible, ideally prior to project initiation, IPLCs are engaged through the appropriate, designated IPLC representative(s) or organization. This is particularly important where cultural, linguistic, and social distance exists between potential IPLC partners and researchers, as the potential for miscommunication and misunderstanding becomes more significant. If engagement did not begin prior to project initiation, it is recommended that researchers seek to involve IPLCs as soon as possible, revisiting and editing the research design when feasible.
A clear, transparent, and accessible dialogue can facilitate a more balanced level of comfort, control, and power, but also establish trust from the outset and understand the research project's aims and the expectations of the IPLCs (Supplementary Table 1) (Supplementary Information Case Study 1.1). A collective understanding not only allows IPLCs to determine what effect the project may have on their values and relationships but also provides researchers the opportunity to understand any IPLC practices, protocols, and processes and how best to embed them into the project. This grants researchers the necessary time to improve the “safety” of their project design, considering the ‘Five Safes Framework” 25,26, and also allows initial plans to be crafted for 1) sample handling and governance, 2) data sharing and management, 3) Intellectual Property and benefit-sharing, 4) communications, and 5) knowledge transfer and capacity building (Supplementary Table 1). If a partnership is mutually agreed upon, all agreements codified in appropriate consents can then be clearly and accurately bolstered into the project design so that every aspect of reference genome production is addressed and in alignment with IPLC expectations.
If during proactive engagement an appropriate IPLC leader, entity or organization cannot be identified, projects should not proceed to the next step of the data-lifecycle as they will be unable to obtain FPIC, it can harmfully impact the community members, and call into question the reputation of the project (Supplementary Case Study 2.1). Although researchers may need to wait to access and use samples in such cases, sustainable partnerships can still be built with partnering IPLCs through capacity building and knowledge transfer.
Step 2: Access, Utilization and Benefit-sharing
IPLCs are the custodians or rights holders of many of the most intact, sparsely populated, and biodiversity rich locations across the world 27. Therefore, the recognition, inclusion, participation of IPLCs and the fair and equitable distribution of benefits are of crucial importance to the success of the biodiversity genomics research community. There is a fraught history of IPLC samples and aTK being unethically accessed, utilized and Intellectual Property (IP) rights being used to appropriate the value of genetic resources without the appropriate consent or the equitable sharing of benefits 28,29,30,31. Research carried on genetic resources and the associated data can result in inventions that could be eligible for IP protection, and negotiating and granting access to genetic resources for research or commercial uses could also raise IP questions 31,32. Many international fora 33–36, including the Convention on Biological Diversity’s Nagoya Protocol16, codify fair and equitable benefit-sharing from the access and use of genetic resources for the purposes of research and development when partnering with IPLCs. For IPLCs, other culturally appropriate methods for reaching agreements may exist such as community protocols and customary law for the access and utilization of genetic resources and aTK.
EBP is committed to ensuring that all genetic resources and aTK contributing to the project are both legally and ethically accessed and used in accordance with all existing applicable customary, local, regional, national, and sub-national laws, including those that govern the fair and equitable sharing of benefits. The CBD’s Nagoya Protocol entered into force in 2014 and provides provisions for a bilateral procedure between a user and a provider for access to genetic resources of potential value to be utilized for research and development purposes by the user seeking prior informed consent (PIC) and agreeing upon mutually agreed terms (MAT) with the provider’s Competent National Authority. The Protocol recognises IPLCs explicitly in Article 7. If a national procedure for Access and Benefit-Sharing (ABS) is in place, all researchers/projects are legally obligated to strictly adhere to these provisions. There are many publicly available resources to support research projects in determining their ABS obligations, including the CBD’s ABS Clearing House 37 (See Supplementary Information for additional resources). In cases where no national ABS procedures have been codified, IPLCs may have alternative or additional practices, protocols, policies and customary laws for access and use.
Typically, the first step of ABS procedures is ensuring PIC is obtained. Consultation and full and effective participation of IPLCs are crucial components of a consent or approval process. As documented in the 2016 the Mo’otz kuxtal Voluntary Guidelines 38 depending on the context of the partnering IPLC, Free Prior Informed Consent (FPIC), PIC, or “approval and involvement” may be the appropriate form of consent to access and utilize samples obtained within the jurisdiction of an IPLC or obtaining any aTK. Where, free refers to consent without coercion, pressure, intimidation, manipulation or unduly influence; prior means consent is sought sufficiently in advance, respecting the customary decision-making processes of IPLCs, including timeline requirements, and in accordance with national legislation; informed ensures all information is transparently provided concerning access including: intended purpose, duration and scope, preliminary assessments of the economic, social, cultural and environmental impacts and risks, personnel involved, procedure planned, and benefit-sharing arrangements. Consent or approval refers to an agreement with the partnering IPLCs or the competent authorities of those IPLCs, as appropriate, to grant access to a potential user and includes the right not to grant consent or approval. Involvement refers to the full and effective participation of IPLCs, in decision-making processes related to access to their aTK. If consent is successfully obtained, it is important that all appropriate measures are undertaken to ensure that samples and aTK are accessed and used in compliance to the terms of consent agreed upon.
Further, if obtained, establishing a mutual understanding of the project is crucial prior to formally codifying mutually agreed terms (MAT). A comprehensive MAT agreement addresses all aspects of the data lifecycle (Figure 1) as well as sets forth terms under which benefits are to be shared, intellectual property is to be protected and the mode of benefit-sharing. MAT also provides an opportunity to define the duration of the contract, the boundaries of the IPLC jurisdiction, and a process for conflict resolution. To date, IPLCs have expressed an interest across a spectrum of monetary and non-monetary benefits, and a non-exhaustive list of potential benefits can be found in the Nagoya Protocol’s annex 16. Although much of the biodiversity genomics research activity will be wholly academic in nature and will not be aimed at the development of new products or processes; IPLC partners have the right to negotiate Intellectual Property (IP) rights on the research, development, and commercial use of IPLC genetic resources and aTK39 (Supplementary Information: Case Study 2.3). If IP protections are sought by the partnering IPLC they can also be codified within MAT/material transfer agreements as contractual clauses. Model contractual clauses are available from the World Intellectual Property Organization’s Traditional Knowledge Division 40,41. Researchers and research projects could benefit from seeking external expert advice on any relevant national legal systems in place, e.g., national patent laws, to better understand the contract review process and how contracts will be enforced. Notably IPLCs: 1) may seek agreements to ensure user access is conditional on not seeking IP rights, and 2) may have additional privacy and confidentiality concerns. For example, an IPLC may stipulate a condition of access for non-disclosure of a certain aTK or may require that the specific origin of a rare, endangered or culturally salient genetic resource be kept confidential.
Finally, the ABS procedure is finalized through the issuance of an Internationally Recognised Certificate of Compliance (IRCC) which is uploaded to the ABS Clearing House by the provider country’s National Focal Point and Competent National Authority. Projects must take any measures necessary to ensure IPLC samples and aTK are accessed and used in compliance with the IRCC.
Step 3: Sample Collection and Processing
IPLC aTK is dynamically evolving as IPLCs ascertain new knowledge through further interaction with species. IPLCs have garnered a wealth of wisdom on therapeutic applications, methods of use, harvesting, and cultivation of biodiversity. Further, aTK can inform abiotic environmental factors, ecosystem behavior and structure, and species morphology, phenotype, taxonomy, growth and much more 42–44. Despite the importance of IPLCs contribution to the conservation and sustainable use of global biodiversity, the access and utilization of IPLC samples and knowledge systems is not an entitlement. All contributions warrant fair recognition and respectful attribution, across the data lifecycle including during sample collection and processing. Many standard fields address the legal expectations of sample collection and oversampling 45,46 however IPLCs may have needs that go beyond these standards 47.
As part of the initial engagement dialogue, it is a good standard of practice to discuss aspects of sample handling and management and co-develop a plan (Supplementary Table 1). This plan can detail the species to be sampled, the cultural salience or endangered nature of those species, and be used to help balance the risks associated with obtaining the required sample immediately against waiting for less invasive sampling techniques to be developed 48. The plan is an important tool for recognizing IPLCs input during species selection, and its co-development facilitates the intersection of western scientific and Indigenous knowledge systems. The plan could also include collection protocols to be followed, preservation, temporary storage, ex-situ storage, sample handling during shipment and return or destruction of samples after sequencing completion.
Upon species co-selection, species within IPLC jurisdiction should be collected and handled to obtain the freshest, best preserved samples possible for DNA extraction to generate a reference genome that will meet accepted quality standards 46. Careful consideration of the protocols utilized by the project when conducting field collection are pertinent to the success of species sample collection to avoid both sample wastage and the need for resampling. If ex-situ storage of specimens is agreed upon in a codified agreement (Section 2), it is important for projects to consider how best to sample, preserve and store additional tissues for both vouchering and cryopreservation. Noting that preservation requirements for long read sequencing and proximity ligation sequencing may differ. This maximizes the scientific value of the sampling expedition, but also provides the IPLC the opportunity to explore further research questions they may have without the need to re-sample.
Metadata will be around far longer than the systems, organizations and institutions that have generated it, and ensuring its interoperability with existing standards is the only way to safeguard its survival and scientific utility into the future. For all samples collected, generating robust metadata that is aligned with both the CARE 15(Figure 1) and FAIR 49 principles is fundamentally important. It is critical to consider what, how and where metadata ought to be collected, accessed and stored and for this to be mutually agreed upon with the partnering IPLC (Section 1,2). As previously mentioned, interoperability is crucial to streamlining downstream connections to vouchers in museum collections, biobanks and digital data and where appropriate metadata should align with pre-existing standards Darwin and Dublin Core (Table 1). To solidify Indigenous Data Sovereignty50 robust information on 1) provenance about place, people, and processes, 2) access and use permissions of samples, and 3) community protocols for use and re-use is important. However, it is important to note that respecting IPLCs rights and interests may require standard metadata collection processes and standards to be adapted and refined to respond to the needs, wants and wishes of the partnering IPLC. To this end, in some cases metadata could be identified as culturally sensitive by the IPLC and so if projects redact metadata this information can be mapped to the dwc:informationWithheld field e.g., culturally important sites. Moreover, metadata requiring generalization can be mapped to dwc:dataGeneralization e.g., geographical coordinates of an endangered species.
One process under development for the inclusion of IPLC rights into metadata is the TK (Traditional Knowledge) and BC (Biocultural) Labels and Notices51, developed by Local Contexts52. The TK and BC Labels and Notices are an extra-legal digital intervention addressing issues of provenance, ownership, access, control, and governance over IPLC digital collections and data. Addressing Indigenous interests that sit outside the current IP regime, the TK and BC Labels and Notices were initiated to directly bring Indigenous authority, perspectives, and protocols into the digital management of IPLC collections in museums, libraries and in digital environments. The TK and BC Labels and Notices provide a much-needed template to address the recognition of inherent authority and responsibility of IPLCs over the genetic resources of flora and fauna as well as all associated sequence information and aTK. The Labels also facilitate attribution of samples, data or aTK across multiple communities using the TK MC Label. If multiple communities have aTK associated to the same species, each IPLC can register this through the Local Context Hub and issue a TK MC (multiple community) Label. The Label can be customized to disclose specific information concerning how to access, utilize and share benefits from the aTK. It can be challenging to understand the often-complex relationships that IPLC’s have with their territories and each other. Interests can overlap or the distribution of a particular species might cross the territories of many different communities. It is better to surface than silence this complexity and allow IPLC’s to determine how their respective interests should be recognized. Sites like Native Lands (www.native-land.ca) can be useful resources to identify communities with associations to the territory or land where the samples were collected, and the TK MC Labels provide a transparent platform to support dialogues. The Labels also facilitate potential future repatriation efforts of the samples, aTK and sequencing information in accordance with the CBD-adopted “Rutzolijirisaxik Voluntary Guidelines”53 on ethical repatriation of IPLC samples.
Table 1: Interoperable Metadata: This table highlights the appropriate Rights metadata fields [Darwin Core] for Labels and Notices.
|
Field / attribute
|
Value
|
Example value(s)
|
|
LABELS
|
|
Rights
|
The custom Label text created by a community for this collection/item using the Local Contexts Hub. For clarity, this should be preceded by the name of the Label. Do not include the generic URL for the Label.
|
Local Contexts TK Attribution: This Label is being used to correct historical mistakes or exclusions pertaining to this material. This is especially in relation to the names of the people involved in performing or making this work and/or correctly naming the community from which it originally derives. As a user you are being asked to also apply the correct attribution in any future use of this work.
|
|
rightsURI
|
The URL of the project in the Local Contexts hub.
|
https://localcontextshub.org/projects/29fc8acd-d647-48db-a766-b2c1bd9264b9/
|
|
rightsIdentifier
|
The identifier of the specific Label being applied.
|
TK-A, BC-P
|
|
rightsIdentifierScheme
|
Local Contexts
|
Local Contexts
|
|
schemeURI
|
Local Contexts website URI
|
https://localcontexts.org
|
|
NOTICES
|
|
Rights
|
Notice text from the landing page of the Notice. For clarity, this should be preceded by the name of the Notice and the URL for the Notice. Use the exact text from the landing page; do not adapt or change the text.
|
Local Contexts Traditional Knowledge (TK) Notice https://localcontexts.org/notice/tk-notice: The TK Notice is a visible notification that there are accompanying cultural rights and responsibilities that need further attention for any future sharing and use of this material. The TK Notice may indicate that TK Labels are in development and their implementation is being negotiated.
|
|
rightsURI
|
The URL of the project in the Local Contexts hub.
|
https://localcontextshub.org/projects/29fc8acd-d647-48db-a766-b2c1bd9264b9/
|
|
rightsIdentifier
|
The identifier of the specific Notice being applied.
|
TK-Notice, BC-Notice, Attribution-Incomplete, Open-To-Collaborate
|
|
rightsIdentifierScheme
|
Local Contexts
|
Local Contexts
|
Step 4: Ex-situ Samples: Taxonomy, Vouchering and Biobanking
When ex-situ samples are collected, preserved, and stored in partnership, and under the governance of IPLCs, they can be of great benefit to the IPLCs and the biodiversity scientific enterprise at large. The value of natural history collections only continues to increase as digitized vouchers become more common, increasing their accessibility to anyone with internet access. Vouchering has many scientific benefits such as enabling verification of species identifications, understanding historical changes of climate, pollutants, and disease, but also enables improved governance. For example, well-documented voucher specimens make it possible to verify a specimen's provenance and provide opportunities for outside entities to evaluate collection and dissemination practices (e.g., journal editors and funding agencies) 54. Other options for ex-situ sample storage include the use of biobanks. Biobanking samples facilitates re-use for further research, results verification, and limits the collection and sacrifice of another individual from the same species. Again, cryopreserved samples can be of great benefit to IPLCs as this method can reduce the need for re-sampling and allow the IPLC to conduct research into the future without sacrificing another species. However, power asymmetries exist due to the lack of museum collections within IPLC jurisdictions, as well as the fraught history of biodiversity samples being linked to colonialism 55. A transformational shift away from these colonial practices is needed where all terms for the access and use of vouchers and biobanking purposes are included, mutually understood, and agreed upon in the consent and codified within contractual agreements (Section 2).
Ideally IPLC samples would be stored, shared, and managed by the partnering IPLC within its jurisdiction. However, the significant initial and continuous investment required to establish ex-situ permanent collections and biobanks has resulted in an uneven global distribution 56, and so the partnering IPLC may wish to pursue the long term storage of samples outside of IPLC jurisdiction. For IPLC samples housed outside of IPLC jurisdiction, several factors are helpful to consider. Ideally, an ex-situ storage strategy would be co-developed and agreed upon in the sample handling and management plan (Supplementary Table 1) during the initial proactive dialogue (Section 1).
Reflecting on the ongoing and historical harms caused to IPLCs due to inappropriate and exploitative ex-situ IPLC sample collection, storage and preservation practices57 can help to frame and understand any rightful distrust or unwillingness IPLCs may have in depositing samples into an ex-situ entity. The diversity of IPLC attitudes toward ex-situ sample collection reflect the unique history, culture, and values of each distinct IPLC 58. After building an appropriate level of cultural awareness, ex-situ collection can then be both discussed during proactive engagement (Section 1), consent obtained and terms of access, use and benefit-sharing codified (Section 2).
Co-selecting an appropriate ex-situ entity can 1) support the respective IPLC’s culture and values, 2) provide rightful attribution to the IPLC, 3) store culturally salient metadata consist DC and DWC (Section 3), 4) provide cultural protocols to guide the stewardship of IPLC samples within the entity, and 5) document and work toward the coexistence of western with traditional names for organisms to facilitate their propagation through to digital databases (Supplementary Information Case Study 3.1) 59,60. Some projects also consider subdividing samples across multiple institutions in case of a catastrophic event at one and potential loss of the sample. Notably, alternative more comfortable entities may exist that can act as a “safe harbor” for IPLC samples offering additional protections not possible from a typical institution within a non-IPLC jurisdiction (Supplementary Information Case Study 3.2). Another helpful approach could be for projects to explore options to hold IPLC samples in trust until the partnering IPLC wishes to reclaim them.
The CBD-adopted “Rutzolijirisaxik Voluntary Guidelines” encourage researchers to identify samples unethically or illegally collected from IPLC lands and consider repatriating these samples to the relevant IPLC in recognition and respect of IPLC sovereignty. Natural history museums are increasingly confronting the problematic basis of many of their collection items55, including a request to the Natural History Museum in London for the return of a 12,000yr old giant ground sloth specimen collected without permission in 1890 (Mylodon darwinii) to Chile <REF> and the successful repatriation of Pelagornis chilensis from Senckenberg Museum to the National Museum of Natural History in Santiago. The Indigenous Research Protection Act and Indigenous research guidelines in Canada, New Zealand, Australia, and the United States all address provisions for individual or collective withdrawal of genomics samples61.
Step 5: Data
Fundamental to the success of generating reference genomes for all of Earth’s biodiversity is ensuring responsible and safe data analysis, management and sharing is conducted in a way that supports and respects the needs and rights of partnering IPLCs 25. To date, the benefits of research produced by data obtained from IPLC lands, or in partnership with IPLCs, have not met the needs of, or have been inaccessible to IPLCs - perpetuating structural injustices. Addressing structural injustices remains a challenge due to their systemic and pervasive nature including: a lack of IPLC governance and authority; power imbalances; unresponsive research; and insufficient inclusion of IPLCs as partners in the biodiversity research enterprise. Mitigating injustices requires investment in genomic infrastructure, building IPLC capacity to enable sovereignty, and facilitating IPLC stewardship of the data associated with IPLC resources
Kukutai & Taylor define data sovereignty as “the right of Indigenous peoples to determine the means of collection, access, analysis, interpretation, management, dissemination and reuse of data pertaining to Indigenous people from whom it has been derived, or to whom it relates." Ideally, both sample preparation and subsequent sequencing will take place within the jurisdiction of the partnering IPLC. IPLCs may also wish for data to be specified, internal or external, data repository (Supplementary Information Case Study 4.1). However, this may be infeasible given inequitable access to the technology and scientific equipment required for generating high-quality genomic datasets. In such cases, equitable, collaborative, and inclusive partnerships that involve and consult IPLCs across the data lifecycle are paramount to safeguarding the return of both short and long-term benefits to the IPLC (Report Section 1, 2, and 3). Topics for consideration during proactive engagement (Section 1) whilst co-developing of a data handling and management plan (Supplementary Table 1) include:
First, it is important that all cultural considerations stated in the sample handling and management plan (Section 1, Section 3) are considered during sample transportation and handling when shipping and handling samples outside of IPLC jurisdiction. Detailing a process for culturally appropriate destruction or the return of specimens post-sequencing within this plan can be helpful as the sample destruction upon sequencing completion may be culturally damaging, and the return of such specimens to IPLC jurisdiction could be preferred.
All sequencing data generated should be associated with culturally relevant, interoperable, metadata to safeguard fair attribution and encourage and promote benefit-sharing (Section 2). Including robust provenance, permission and protocol metadata information is important and should be consistent with both DC, DWC but importantly also linked to the original metadata collected upon sample collection (Section 3, Table 1).
IPLCs may have expectations, such as the CARE principles (See Box 2), for how their data may be accessed, stored (short and long-term, used and reused, and clearly and proactively documenting these preferences into the data handling and management plan provides clarity to downstream users. The Traditional Knowledge and Biocultural Labels and Notices are a powerful tool in providing transparency to downstream researchers about these expectations. Indigenous Data Sovereignty is essential if selecting an external repository, and thoughtful consideration by research projects can help to ensure that the repository selected supports the appropriate, culturally tailored data governance for access and use of data as dictated by the IPLC. In cases where it is agreed that IPLC data are housed in an external data repository, a repository that endorses and implements the TRUST principles is highly recommended 62. The TRUST principles include the principle of sustainability, which importantly safeguards the long-term data storage of IPLC data so that IPLCs can sustainably gain access beyond project completion. Prioritizing an accessible format for IPLC data that is useful for the needs of the IPLC promotes the re-usability of the data for the IPLC.
Box 2: Application of CARE Principles to Biodiversity Genomics Data Governance
|
Collective Benefit: Ensuring data management and sharing functions, supports, and promotes IPLCs to use and reuse IPLC data facilitates IPLC exploration, articulation, and application and enhances production of outcomes of value to IPLCs.
Authority: Indigenous Data Sovereignty 63 affirms IPLCs authority to control how IPLC data is expected to be used/reused, analyzed, interpreted, managed, and shared. It safeguards IPLC governance, and for data held by non-IPLC entities actively involves IPLCs in stewardship decisions.
Responsibility: Conducting culturally safe biodiversity research through appropriate sharing and use of IPLC data is a responsibility of researchers. Awareness and recognition of the historic and ongoing research misconduct involving IPLCs and IPLC data are important for understanding, and respecting IPLCs legitimate research related concerns. Proactive, transparent conversations around how IPLCs data will be managed and shared are of paramount importance to building trust and cultivating genuine relationships between IPLCs and the biodiversity genomics research community.
Ethics: To maximize benefit, minimize harm, and promote justice many IPLCs have laws, regulations, or policy on the management and sharing of sequencing information and aTK acquired from IPLC lands. Recognizing these laws, processes, and policies is critical when planning and conducting ethical research that involves generating, managing, and sharing IPLC data.
|
Embedding analyses that support research questions of importance to the partnering IPLCs into the project design helps to safeguard beneficial research outcomes returning to the partnering IPLC. Additionally, IPLC participation in the data analysis process is important for equity and inclusion; this may require funding to support IPLC partners’ travel to collaborating institutions to access analysis resources as well as time and resources to train IPLC in downstream analysis in their own jurisdictions.
Supporting IPLCs to become data stewards over genomic data generated from species within IPLC jurisdiction is important for both relationship and capacity building but also IPLC participation in the digital revolution. Prioritizing opportunities to build capacity, leveraging IPLCs’ existing capacities (asset-based approach 64) and ensuring alignment with IPLC needs, objectives and motivations can facilitate, strengthen and expedite IPLC stewardship. This could include training, workshops, mentorship in laboratory techniques (DNA extraction, library preparation, etc.), and data analysis techniques (QC, assembly, downstream analysis, etc.). This may also include subsidized access to infrastructure (e.g., high-performance cluster access), and the funding of equipment and infrastructure (e.g., writing IPLC partners in grants to purchase supplies, equipment, and computational resources). Recent reports highlight that sequencing data is more often used locally to where the samples have been originally collected 65, and so it is important to intentionally build local capacity for the full scientific value to be realized. This can also help to ensure that IPLCs are supported in removing barriers to implementing the research findings of the project. When constructing capacity building opportunities, it is important to consider the socioeconomic factors at play so that equity and accessibility to all members within the IPLC can be achieved 4.
Step 6: Research Communication and Dissemination
Peer-reviewed publications are the primary research communication strategy utilized by academic researchers to communicate research findings associated with research projects. These publications serve to promote and consolidate the associated researchers’ academic career, and unfortunately, they are often prioritized by researchers over aims relevant to other project stakeholders and partners. The heterogeneity across global IPLCs engenders diverse expectations surrounding the communication and dissemination of results, contribution acknowledgements, roles and responsibilities, and timeframes. Honoring a process of openness and transparency in developing partnerships between biodiversity genomics research projects and IPLCs must include thoughtful and intentional participation to 1) effectively report research findings back to the partnering IPLC(s) throughout the research project, 2) communicate research findings to stakeholders both inside and outside of academia, and 3) ensure benefits are shared related to dissemination and communication from research engagement.
Developing a research communication and dissemination plan as part of the open and transparent process when building partnerships with IPLCs is an important step to proactively address prior to project initiation (Section 1, Table 1, Supplementary Information Case Study 5.1). After this research projects can use the plan to ensure a strategy is in place to implement its contents, noting that as the dissemination and communication cycle is iterative in nature, a process for quality control and improvement throughout the life cycle of the project may be needed. Careful planning can ensure that all party’s values, relationships, and procedures are understood and clearly delineated for informal (e.g., Twitter, workshops, trainings, news, and other media, etc.) and formal (e.g., academic journals, press releases, theses and dissertations, etc.) research communication and dissemination. Critical to success is including how the project can best acknowledge IPLC participation in all research outputs. Research translation (i.e., transforming scientific evidence for use in practice) involves many practices and strategies and operates at varying levels, including the individual, project, community, and society.
The plan can also be useful to define the dissemination objectives, prioritize target audiences or stakeholders, identify potential key messages and detail other work plans (e.g., timelines, responsibilities, budgets, and communication channels such as press releases or journals). It is important to note that IPLCs may have pre-existing and preferred platforms or modes of communication platforms in place; identifying and prioritizing these primary platforms of communication and dissemination during plan development is recommended. Additionally, on project completion, IPLCs may request a final research report from the research project. This allows the research findings to be communicated back to the partnering IPLC but also provides a means for outcomes to be transmitted back to all who participated in the research project, including IPLC leaders or designated officials, IPLC entities or organizations, IPLC members, informal networks, and colleagues. This report could be written or oral in format and may require plain language summaries or translation to ensure that results are as accessible as possible to the IPLCs. Translation to local languages is important for both academic goodwill, but also so that the report is useful for local policymakers. Free, online translation tools such as DeepL or Google Translate can be useful when a paid translator has not been accounted for in the project’s budget. Other culturally accepted forms of communication, e.g., ceremony, might also be avenues for a final research report.
After the mode of communication and expected timeline for sharing research outcomes have been mutually understood and agreed upon, it is important to establish a process for IPLC feedback on the effectiveness of the research study and its findings. In alignment with the Tri-Council Policy Statement 66, it is a recommended best practice to recognize and integrate feedback and suggestions from the partnering IPLC in any publication associated with the research project, as this can strengthen research findings with additional complementary information and prevent the publication of misunderstood or misrepresented findings. If an unresolvable disagreement concerning interpretation of the research findings arises, options include either (a) provide an opportunity for the IPLC to make its views known, or (b) accurately report any disagreement about the interpretation of the data in all research communications. This method facilitates the publication of the research findings whilst respecting IPLC knowledge systems as co-equals when interpreting and contextualizing the findings.