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Published: 17 Jan, 2022

CARE: Indigenous rights and open data

FEATURE The development towards open science and increased access to research data is seen as great progress as well as a source of tension among indigenous peoples, as there are concerns about ethical issues as data becomes more widely available. The CARE principles are proposed as a way forward.

Text: Sanna Isabel Ulfsparre

Abstract

As academia develops towards open science and increased access to research data and materials, we find ourselves with new possibilities and opportunities to use and reuse research output. Among indigenous people, this development is considered a great progress, as well as a source of tension, as they have worked towards both increased transparency and increased control over application and use of indigenous data and knowledge.

In order to bring light to ethical issues regarding indigenous data, the organisation GIDA (Global Indigenous Data Alliance) is presenting the CARE (Collective benefit, Authority to control, Responsibility, Ethics) principles – a suggestion for a principal framework to be used as a complement to the established FAIR (Findable, Accessible, Interoperable, Reusable) principles for research data management.

In the framework of CARE, the concept "Indigenous data" include all data connected to indigenous peoples and resources, regardless of level. Indigenous data are not limited to data collected within research contexts. The term include qualitative as well as quantitative data, and all types of data – from personal and cultural data to data concerning indigenous resources and environments. In the article Operationalizing the CARE and FAIR principles for Indigenous data futures, published in Nature (2021), Carroll et al. states that "Earth and space science research data is highly relevant to Indigenous communities". In other words, indigenous data occur in a wider range of research domains than one might generally assume.

CARE might lead to increased visibility and dissemination of interdiciplinary research. Among other things it is important that descriptive metadata uphold a high quality in the larger, generalist resources and structures for information organisation.

If the CARE principles are to be used, they need to operate in line with other existing frameworks for research ethics. The principles are interesting reading for researchers, regardless of level of implementation, as they provide information about aspects of research data management and use that might be ethically important. 

In a Swedish context, the CARE principles are being processed in relation to our seats of learning and governing institutions. The question of whether, and to what extent, CARE might become guidelines for ethical research practices in Sweden is still open. However, that the CARE principles are on the agenda in itself mean that indigenous issues and the UN resolution UNDRIP are tested and brought to the fore in relation to our ethical framework for open science and open data.

 

Indigenous people

"Indigenous peoples are inheritors and practitioners of unique cultures and ways of relating to people and the environment. They have retained social, cultural, economic and political characteristics that are distinct from those of the dominant societies in which they live." Indigenous people at the United Nation

Indigenous peoples are groups of people who have retained a collective culture and a strong connection to specific areas of land throughout history, since before the definition of borders by national states. Indigenous peoples are determined to uphold and restore their cultural systems and relations to their surroundings, at the same time as they maintain the right of the people and culture to change and evolve with time and in varying contexts. However, it is worthy to note that the term "Indigenous peoples" is difficult to fully define, because of the diversity and range of the peoples included in it. The UN declaration on indigenous rights (UNDRIP) does not include a definition of indigenous peoples: "self-identification as indigenous is considered a fundamental criterion. The Declaration refers to their right to determine their own identity or membership in accordance with their customs and traditions." (Indigenous peoples, UN)

The Sami people are the only group of people in Sweden with indigenous status.

Background

The indigenous people of the world are deeply engaged in the development of ethical research, as research has a significant impact on decision-making, resources, innovation and political and societal development. The current movement toward open science, increased transparency and increased access to research data and materials is considered a positive development from an indigenous perspective, as it is seen as a potential resource to improve the living conditions for indigenous people and as a way to follow and engage in decision making on a societal level.

increased transparency and increased access to research data and materials is considered a positive development from an indigenous perspective

At the same time there are concerns about how research materials and data linked to indigenous contexts may be reused, as there might be no relation between the indigenous frameworks from which the material and data is gathered and the research context where it is reused. There are concerns that this disconnect might lead to a decrease in researcher accountability when data is reused, as well as diminished opportunities for indigenous peoples to follow the data and the research output it might generate.

In 2019 the organisation GIDA (The Global Indigenous Data Alliance) was founded as a platform to facilitate and increase the visibility of indigenous perspectives on data and data management. Representatives from seven national states founded the organisationin order to create a forum for international researchers, data practitioners and policy activists. The purpose of GIDA is partly to promote research data management that live up to international laws and regulation, including the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP), and partly to foster further legislation and development in support of indigenous rights regarding data.

The work of GIDA relates to the FAIR principles. The FAIR principles have become a guiding beacon for the development toward open data in academia, FAIR being an acronym of the key concepts: Findable, Accessible, Interoperable, Reusable. The FAIR principles focus on metadata and technical solutions required to make research data more available. While GIDA approve of the FAIR principles, they are considered insufficient, since they provide tools for increased access and data use without taking into consideration issues such as power structures, context and social structures.

While GIDA approve of the FAIR principles, they are considered insufficient

GIDA is also concerned about how the focus on sharing data in the FAIR principles relate to indigenous interests in gaining further insight in and control over research data and materials. This can at times be a complicated and fraught area, since the movement toward increased indigenous influence over research data and research output touches on national and international ethical frameworks that protect and govern academic freedom - frameworks  which emphasise that researchers and research are to be free from influence from external parties. Additional tension surrounding the issue might be added to various degrees by regional political situations and attitutes toward indigenous peoples and interests.

The CARE principles

The concept of indigenous rights and interests concerning open data was concretised in 2019, when the CARE principles were presented. CARE is an abbreviation of Collective benefit, Authority to Control, Responsibility, Ethics. The principles were developed through GIDA as well as the Research data alliance (RDA), specifically the RDA International Indigenous Data Sovereignty Interest Group and The FAIR Data Maturity Group. Their goal was for CARE to be a way of strengthening the potential for ethical management of indigenous data – that is data that relates to indigenous peoples and their interests.

In the framework of CARE, the concept "Indigenous data" include all data connected to indigenous peoples and resources, regardless of level. Indigenous data are not limited to data collected within research contexts. The term include qualitative as well as quantitative data, and all types of data – from personal and cultural data to data concerning indigenous resources and environments:

The UN Declaration on the Rights of Indigenous Peoples (UNDRIP) reaffirms Indigenous rights to self-governance and authority to control their Indigenous cultural heritage embedded in their languages, knowledge, practices, technologies, natural resources, and territories (i.e., Indigenous data). Indigenous data, which include data collected by governments and institutions about Indigenous Peoples and their territories, are intrinsic to Indigenous Peoples’ capacity and capability to realise their human rights and responsibilities to all of creation.

(CARE Principles for Indigenous Data Governance)

In the article Operationalizing the CARE and FAIR principles for Indigenous data futures, published in Nature (2021), Carrol et al. state that "Earth and space science research data is highly relevant to Indigenous communities". In other words, indigenous data occur in a wider range of research domains than one might generally assume.

A central aspect of the FAIR principles is that research data need to be described and made findable through use of metadata descriptions, and CARE comply with that by stressing the importance of thorough and comprehensive metadata. This shows, among other things, in the emphasis that the information needed to acquire consent when reusing data are to be explicit and clearly included in metadata descriptions. CARE also insists that a generous description of the provenance (origin and context) of materials and data are to be included in metadata descriptions.

The CARE principles recommend that representatives from indigenous people are included in ethical processes

Those who use indigenous data and materials are expected to make sure that the use of the resources respect and protect indigenous dignity and values, and that the value and gain generated by the research benefit indigenous peoples as well as society as a whole – a position that can be seen in the light of historical patterns of exploitation of indigenous peoples. The CARE principles recommend that representatives from indigenous people are included in ethical processes, for example when ethical reviews of research are performed, and that such processes consider imbalances regarding power, resources, indigenous rights and human rights. Indigenous representation in ethical reviews are possible at Swedish seats of learning.

The principles also contain expectations of further inclusion and insight into the processes of research data management. There is a focus on indigenous people gaining access to the training, resources and infrastructures needed in order to give informed consent and cooperate actively with researchers, as well as to facilitate the desired regulation of research data.

Indigenous knowledge is considered to be especially important for research on sustainable development

A particular focus is placed on data that counts as "Indigenous knowledge", knowledge that evolves on a societal level as product of a long history of interaction between an indigenous socitey and the surrounding environments. Indigenous knowledge is considered to be especially important for research on sustainable development by UNESCO, among others: "These unique ways of knowing are important facets of the world’s cultural diversity, and provide a foundation for locally-appropriate sustainable development." (Local and Indigenous Knowledge Systems (LINKS), UNESCO)

Another clear subject matter in CARE is that the use of indigenous data is supposed to be reciprocal. Use of indigenous data is expected to be followed by efforts to strenghten indigenous data literacy, as well as developments of an Indigenous data workforce and digital infrastructures. This might, in combination with high-quality searchable descriptive metadata on a domain trancendent level, create long-term conditions for increased findability in interdisciplinary research domains pertaining to indigenous data.

Good metadata in combination with skilled data professionals and infrastructures amount to good conditions for development of new, interesting and important resources and services for seeking, finding and increasing the dissemination of research data and results. Such develompent would benefit indigenous peoples and also be of gain for researchers in interdiciplinary fields – such as Sami studies, a profiled research area at Umeå university.

it is crucial to reach a broad implementation of high-quality open, searchable and controlled metadata for research data, regardless of research domain

However, for this to be possible, it is crucial to reach a broad implementation of high-quality open, searchable and controlled metadata for research data, regardless of research domain. Such metadata is a basic requirement if it is to be possible to do the exact searches required to gather comprehensive information about available data in a field of research, as well as import information from more general sources to curate more subject-specific catalogues about data.

Increasing the findability of research results in interdiciplinary fields has long been a challenge in traditional systems for information organisation, since our most prevalent systems often are hierarchical and were established more than a hundred years ago. One researcher who has noticed this in relation to research connected to the Sami people is Coppélie Cocq. Cocq contacted Umeå university library in order to find out more, a subject covered by Susanne Sjöberg in an earlier feature.

The difficulties can partly be explained by the classification systems used. As Anders Lennver sais in Sjöbergs feature: "Dewey is an old American classification system in which Anglo-American culture is the norm, while Sami culture, for example, is seen as something exotic and thus ends up on the periphery, and thus gets longer codes" (Sjöberg, 2021). Another explanation might be that interdiciplinary research often simultateously belong to more established traditional research domains (for example "Sami studies" and "Medicine"), and that focus can sometimes be more heavily placed on the traditional domains, rather than on the interdiciplinary aspect, when the resources are placed in the system.

Consequently, there are currently good circumstances for developments of new systems and structures for organising knowledge and information and making data findable.

Since the evolution toward open data is comparatively new, we are currently right at the beginning of the development of a comprehensive and international knowledge organisation of research data as research output in its own right. The area is not as encumbered by traditional structures as the more established organisation of research publications - even though there are similarities and need for metadata to be linked and overlap in interoperable ways. Nor are the hierarchical structures of the traditional classification systems as central for digital resources, since they don't need to be placed in physical rooms and collections. 

Consequently, there are currently good circumstances for developments of new systems and structures for making data findable. This does not indicate that the old structures cannot be used as well, quite the opposite. The established metadata structures entail connections and findability in relation to traditional research domains and resources that might not have connections to indigenous peoples, and still be relevant for the research interests of the person searching for information. Generous use of metadata increase findability and ways to locate the resources you need, which is key to fulfilling the FAIR principles. 

Some of the aspects of CARE that might show to be more controversial concern increased control of parts of the research process. This include recommendations that indigenous representatives, in the capacity of being indigenous, are to gain further influence over protocols for collection of data. In an academical context, depending on research domain and extent of the control, this might prove to be a tricky area with regard to the integrity of the research. 

Academic freedom is in itself an important research ethical principle, and the entire research ethical framework need to be followed

In Sweden it is already possible to invite representatives from indiginous peoples as advisors, but the representatives cannot be allowed to gain too much influence over how research data is managed and handled. According to The European Code of Conduct for Research integrity (ALLEA, 2017), researchers need to have the “[...] freedom to define research questions and develop theories, gather empirical evidence and employ appropriate methods”. Research should as far as possible be conducted without pressure from external parties. The status of academic freedom was strenghened in 2021 with the addition of a general policy in Högskolelagen (6 §, SFS 2021:317), the Swedish law regulating academia and higher education. Academic freedom is in itself an important research ethical principle, and the entire research ethical framework need to be followed when research is conducted – or both research results and research as such might stand to lose in credibility and value.

All kinds of external control over data protocols and other research processes need to be clearly described, regulated and defined, so that the integrity and freedom of the research cannot be questioned. These definitions and delimitations are not fully done in the CARE principles, leaving plenty of room for various interpretations and contextual adjustments. However, the resulting openness entail that researchers who want to use the CARE principles as guidelines for their research, need to be concrete and specific of their interpretations of CARE in relation to other research ethical frameworks, and in a way define the principles by applying them – in turn providing guiding examples for others to follow.

Status of the CARE principles in Sweden

In Sweden the CARE principles are currently to be seen as a research political proposal from a stakeholder, to be processed in the context of academia. At the moment, there is very little open discussion on how and to what extent CARE can and should be used in a Swedish context, even though the matter has been brought to the table of our national institutions, authorities and seats of learning. The authorities who primarily influence the framework for research ethics and issues regarding research on indigenous materials are:

  • The Swedish parliament (Riksdagen), the authority responsible for Swedish legislation. If the CARE principles are to be national guidelines, they need to be supported by Swedish law.
  • The Swedish Research Council (Vetenskapsrådet), where the general guidelines for research ethics are formulated – for example the publication Good Research Practice (2017).
  • The Swedish Ethical Review Authority (Etikprövningsmyndigheten), are responsible for the application of ethical guidelines, laws and regulations concerning research.

The Swedish Ethical Review Authority (Etikprövningsmyndigheten) might become an important party in of the continued development of ethics in indigenous research political issues. The researchers themselves are also important, both in discussions about the CARE-principles and in the continous development of ethics in practice in the research area.

CARE provides insight into indigenous perspectives and considerations

For the individual researcher, the CARE principles may prove to be interesting reading, since CARE provides insight into indigenous perspectives and considerations that is consider important and desirable by GIDA and the RDA International Indigenous Data Sovereignty Interest Group. As such, CARE might be especially interesting for research contexts where there are connections to indigenous environments, but where data is collected without much interaction with indigenous people or their institutions. Regardless of level of implementation, they also provide information about aspects of research data management and use that might be ethically important.

The question of whether, and to what extent, CARE might become general guidelines for ethical research practices in Sweden is still open. However, that the CARE principles are on the agenda in itself mean that indigenous issues and the UN resolution UNDRIP is tested and brought to the fore in relation to our ethical framework for open science and open data.

Sources and further reading

Carroll et al. Operationalizing the CARE and FAIR principles for indigenous data futures (2021). Nature

Good Research Practice (2017). The Swedish Research Council (Vetenskapsrådet)

Högskolelag (1992:1434)

Indigenous peoples (UN)

Indigenous Peoples at the United Nations

Local and Indigenous Knowledge Systems (LINKS). UNESCO

Sjöberg, S. About hard-to-find topics in the library system (2021). Umeå university library

The CARE principles (2019). GIDA

The European Code of Conduct for Research Integrity (2017, revised edition). ALLEA – All European Academies

The FAIR principles. Go Fair

The United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP)

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