Isu ketersingkiran masyarakat adat dari tanah ulayat dan perampasan hak sosial, budaya, ekonomi dan politik di tingkat internasional telah mendapat respon positif dari lembaga internasional seperti Perserikatan Bangsa-Bangsa. Menjadi hal yang sangat penting bagi perjuangan berbagai komunitas masyarakat adat di seluruh dunia ketika PBB kemudian berhasil mencetuskan Deklarasi Hak Masyarakat Adat pada 13 September 2007 setelah proses negosiasi panjang selama puluhan tahun. Prinsip-prinsip yang memuat jaminan pengakuan dan perlindungan hak masyarakat adat secara menyeluruh ini diharapkan dapat menjadi standar acuan regulasi pengakuan dan perlindungan hak masyarakat adat negara yang terlibat di dalamnya termasuk Indonesia. Hingga saat ini Indonesia belum dapat memberikan jaminan perlindungan hak-hak masyarakat adat karena lemahnya regulasi yang mengatur pengakuan dan pemenuhan terhadap hal tersebut. Hal ini dikarenakan kebijakan pembangunan yang sentralistik dan bergerak dari atas ke bawah sehingga mengabaikan keberadaan masyarakat adat yang seharusnya dapat menjadi subjek dalam pembangunan. Penulis menggunakan teori rezim internasional untuk menganalisa penguatan rezim internasional mengenai hak masyarakat adat muncul sebagai reaksi terhadap kebutuhan untuk melakukan koordinasi perilaku berbagai negara tentang isu tersebut untuk kemudian dapat mempengaruhi perilaku berbagai negara yang masuk ke dalam rejim tersebut termasuk Indonesia. Kemudian konsep keputusan dini tanpa paksaan berdasarkan informasi lengkap digunakan sebagai ukuran atau kriteria untuk menilai kebijakan yang telah dikeluarkan pemerintah Indonesia berkaitan dengan masyarakat adat. Kedua alat analisa kemudian menunjukan bahwa keberadaan deklarasi PBB mengenai masyarakat adat sangat penting untuk di adopsi dalam kerangka regulasi nasional karena prinsip di dalamnya dapat dijadikan standar acuan bagi Indonesia yang tingkat pelanggaran terhadap hak-hak masyarakat adatnya tinggi karena lemahnya regulasi mengenai hal tersebut.

United nations declaration on the rights of indigenous peoples: relevansi dan urgensinya terkait pembentukan regulasi mengenai jaminan perlindungan hak masyarakat adat di indonesia

As big data, open data, and open science advance to increase access to complex and large datasets for innovation, discovery, and decision-making, Indigenous Peoples’ rights to control and access their data within these data environments remain limited. Operationalizing the FAIR Principles for scientific data with the CARE Principles for Indigenous Data Governance enhances machine actionability and brings people and purpose to the fore to resolve Indigenous Peoples’ rights to and interests in their data across the data lifecycle.

/pdf/operationalizing-the-care-and-fair-principles-for-indigenous-31i29ko29m.pdf

Operationalizing the CARE and FAIR Principles for Indigenous data futures.

Longstanding social and economic inequities elevate health risks and vulnerabilities for Black, Indigenous and People of Color (BIPOC) communities. Engagement of BIPOC communities in infectious disease research is a critical component in efforts to increase vaccine confidence, acceptability, and uptake of future approved products. Recent data highlight the relative absence of BIPOC communities in vaccine clinical trials. Intentional and effective community engagement methods are needed to improve BIPOC inclusion. We describe the methods utilized for the successful enrollment of BIPOC participants in the U.S. Government (USG)-funded COVID-19 Prevention Network (CoVPN)-sponsored vaccine efficacy trials and analyze the demographic and enrollment data across the efficacy trials to inform future efforts to ensure inclusive participation. Across the four USG-funded COVID-19 vaccine clinical trials for which data are available, 47% of participants enrolled at CoVPN sites in the US were BIPOC. White enrollment outpaced enrollment of BIPOC participants throughout the accrual period, requiring the implementation of strategies to increase diverse and inclusive enrollment. Trials opening later benefitted considerably from strengthened community engagement efforts, and greater and more diverse volunteer registry records. Despite robust fiscal resources and a longstanding collaborative and collective effort, enrollment of White persons outpaced that of BIPOC communities. With appropriate resources, commitment and community engagement expertise, the equitable enrollment of BIPOC individuals can be achieved. To ensure this goal, intentional efforts are needed, including an emphasis on diversity of enrollment in clinical trials, establishment of enrollment goals, ongoing robust community engagement, conducting population-specific trials, and research to inform best practices.

/pdf/increasing-black-indigenous-and-people-of-color-f9tyvo73h2.pdf

Increasing Black, Indigenous and People of Color participation in clinical trials through community engagement and recruitment goal establishment.

The rapidly emerging field of macrogenetics focuses on analysing publicly accessible genetic datasets from thousands of species to explore large-scale patterns and predictors of intraspecific genetic variation. Facilitated by advances in evolutionary biology, technology, data infrastructure, statistics and open science, macrogenetics addresses core evolutionary hypotheses (such as disentangling environmental and life-history effects on genetic variation) with a global focus. Yet, there are important, often overlooked, limitations to this approach and best practices need to be considered and adopted if macrogenetics is to continue its exciting trajectory and reach its full potential in fields such as biodiversity monitoring and conservation. Here, we review the history of this rapidly growing field, highlight knowledge gaps and future directions, and provide guidelines for further research.

Opportunities and challenges of macrogenetic studies

Biodiversity underlies ecosystem resilience, ecosystem function, sustainable economies, and human well‐being. Understanding how biodiversity sustains ecosystems under anthropogenic stressors and global environmental change will require new ways of deriving and applying biodiversity data. A major challenge is that biodiversity data and knowledge are scattered, biased, collected with numerous methods, and stored in inconsistent ways. The Group on Earth Observations Biodiversity Observation Network (GEO BON) has developed the Essential Biodiversity Variables (EBVs) as fundamental metrics to help aggregate, harmonize, and interpret biodiversity observation data from diverse sources. Mapping and analyzing EBVs can help to evaluate how aspects of biodiversity are distributed geographically and how they change over time. EBVs are also intended to serve as inputs and validation to forecast the status and trends of biodiversity, and to support policy and decision making. Here, we assess the feasibility of implementing Genetic Composition EBVs (Genetic EBVs), which are metrics of within‐species genetic variation. We review and bring together numerous areas of the field of genetics and evaluate how each contributes to global and regional genetic biodiversity monitoring with respect to theory, sampling logistics, metadata, archiving, data aggregation, modeling, and technological advances. We propose four Genetic EBVs: (i) Genetic Diversity; (ii) Genetic Differentiation; (iii) Inbreeding; and (iv) Effective Population Size (Ne). We rank Genetic EBVs according to their relevance, sensitivity to change, generalizability, scalability, feasibility and data availability. We outline the workflow for generating genetic data underlying the Genetic EBVs, and review advances and needs in archiving genetic composition data and metadata. We discuss how Genetic EBVs can be operationalized by visualizing EBVs in space and time across species and by forecasting Genetic EBVs beyond current observations using various modeling approaches. Our review then explores challenges of aggregation, standardization, and costs of operationalizing the Genetic EBVs, as well as future directions and opportunities to maximize their uptake globally in research and policy. The collection, annotation, and availability of genetic data has made major advances in the past decade, each of which contributes to the practical and standardized framework for large‐scale genetic observation reporting. Rapid advances in DNA sequencing technology present new opportunities, but also challenges for operationalizing Genetic EBVs for biodiversity monitoring regionally and globally. With these advances, genetic composition monitoring is starting to be integrated into global conservation policy, which can help support the foundation of all biodiversity and species' long‐term persistence in the face of environmental change. We conclude with a summary of concrete steps for researchers and policy makers for advancing operationalization of Genetic EBVs. The technical and analytical foundations of Genetic EBVs are well developed, and conservation practitioners should anticipate their increasing application as efforts emerge to scale up genetic biodiversity monitoring regionally and globally.

/pdf/global-genetic-diversity-status-and-trends-towards-a-suite-12h8e06c.pdf

Global genetic diversity status and trends: towards a suite of Essential Biodiversity Variables (EBVs) for genetic composition

Concerns about secondary use of data and limited opportunities for benefit-sharing have focused attention on the tension that Indigenous communities feel between (1) protecting Indigenous rights and interests in Indigenous data (including traditional knowledges) and (2) supporting open data, machine learning, broad data sharing, and big data initiatives. The International Indigenous Data Sovereignty Interest Group (within the Research Data Alliance) is a network of nation-state based Indigenous data sovereignty networks and individuals that developed the ‘CARE Principles for Indigenous Data Governance’ (Collective Benefit, Authority to Control, Responsibility, and Ethics) in consultation with Indigenous Peoples, scholars, non-profit organizations, and governments. The CARE Principles are people– and purpose-oriented, reflecting the crucial role of data in advancing innovation, governance, and self-determination among Indigenous Peoples. The Principles complement the existing data-centric approach represented in the ‘FAIR Guiding Principles for scientific data management and stewardship’ (Findable, Accessible, Interoperable, Reusable). The CARE Principles build upon earlier work by the Te Mana Raraunga Maori Data Sovereignty Network, US Indigenous Data Sovereignty Network, Maiam nayri Wingara Aboriginal and Torres Strait Islander Data Sovereignty Collective, and numerous Indigenous Peoples, nations, and communities. The goal is that stewards and other users of Indigenous data will ‘Be FAIR and CARE.’ In this first formal publication of the CARE Principles, we articulate their rationale, describe their relation to the FAIR Principles, and present examples of their application.

/pdf/the-care-principles-for-indigenous-data-governance-13s2czms00.pdf

Kay Raseroka

Papers

The CARE Principles for Indigenous Data Governance