Whose Data,Whose Ethics? Rethinking Ethical Accountability in Research Using Publicly Available Indigenous Data

Abstract

Prevailing practices in research are to treat information found in the public domain as ethically unencumbered, requiring no obligation to the individuals or groups represented. This assumption rests on a narrow interpretation of ethical responsibility, namely, that if information is publicly accessible and unprotected by privacy law, it falls outside the purview of consent and harm considerations. Canadian ethical guidelines such as the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2, 2022), can be interpreted as placing the burden of protection on individuals and communities, rather than on researchers, when information enters the public domain. However, this interpretation overlooks the histories and abuses of Indigenous Peoples, whose publicly available data still carry cultural significance and reflect collective identity. As a consequence of colonization, the inherent sovereignty of Indigenous Nations—and our right to affirm, control, and protect our cultural identities—has been historically denied or constrained. This colonial legacy continues to shape current research ethics frameworks, which often fail to acknowledge or operationalize Indigenous Peoples’ collective rights and sovereignty over data concerning us. In response, Indigenous ethical frameworks such as the First Nations principles of Ownership, Control, Access, Possession (OCAP), affirm Indigenous Peoples’ collective rights to govern how data and research about us are conducted and used. While Chapter 9 of the TCPS2 encourages researchers to respect Indigenous protocols and ethical guidelines, it falls short of fully recognizing Indigenous Peoples’ inherent sovereignty or our right to consent, approve, or be meaningfully involved in interpretations of all publicly-available data that describes us collectively as a group, community, or nation. This commentary argues that relational accountability grounded in community engagement and Indigenous-led decision-making must be recognized as an ethical imperative in all research pertaining to Indigenous Peoples, including when leveraging data from public sources.

Introduction

The widespread dissemination of information through digital platforms—accelerated by the COVID-19 pandemic and further amplified by the proliferation of artificial intelligence, open data initiatives, and open science—has greatly expanded the volume of data available in the public domain (Kukutai and Taylor, 2016; Rainie et al., 2019). While this has opened new avenues for research, it has also intensified ethical tensions around the secondary use of publicly available data, particularly when such data pertain to Indigenous peoples and communities (Carroll et al., 2020). A prevailing assumption in many research practices is that data in the public domain are ethically unencumbered, requiring no consent, engagement, or accountability to those represented (Hartzog, 2019; Williams et al., 2017). This assumption reflects a legalistic and individualistic model of ethical responsibility, which fails to account for the collective rights, cultural significance, and historical marginalization of Indigenous Peoples (Kukutai and Taylor, 2016).

In this paper, we use the term publicly available data to refer broadly to data that are accessible for reuse through open government or institutional repositories, research data made available for secondary analysis, and data circulating in digital environments (i.e. social media platforms) where reuse is possible. Canadian research ethics guidelines, including the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2, 2022), provide limited guidance on the ethical use of public data involving Indigenous communities. While Chapter 9 of the TCPS2 encourages respect for Indigenous protocols and community engagement, its application is often restricted to data collected directly through interaction with participants.

A review of published research reveals a variety of discussions on the topic of the use of publicly available data, with some scholars advocating for clearer guidelines (Cooper and Coetzee, 2020; Hunter et al., 2018; Stevens et al., 2015) and others proposing their own frameworks for its use for research in Indigenous contexts (Bhawra et al., 2022). Notably, an examination of community-based Indigenous research ethics protocols in Canada identified three essential themes: (1) the importance of obtaining both individual and collective consent; (2) the necessity to uphold culture through ethical principles like the 5 R’s (Respect, Relevance, Reciprocity, Responsibility and Relationship) and the Two-Eyed Seeing framework; and (3) the imperative for research to be beneficial to Indigenous communities while incorporating traditional knowledge and values into the research process (Hayward et al., 2021). The First Nations OCAP© principles (Ownership, Control, Access, and Possession; Brockie et al., 2022; Bull, 2010; Campbell, 2014) and the global CARE Principles (Collective Benefit, Authority to Control, Responsibility, Ethics; Carroll et al., 2020) further assert the rights of Indigenous Peoples to govern our data, including data reuse and secondary analysis.

Despite the growing recognition of these frameworks, much of the existing literature about the ethical use of public data sources predominantly concentrates on individual data, leaving a critical gap in understanding the ethical use of publicly available community-level data about Indigenous Peoples. This commentary argues that community engagement should be a foundational ethical standard for any research pertaining to Indigenous Peoples. We assert that community engagement is not simply good practice but an ethical imperative for ensuring a more respectful and relationally accountable approach to any research pertaining to Indigenous Peoples.

Ethical gaps in the TCPS2 (2022) guidance on publicly available data

The Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2, 2022)—the guiding document for ethical research conduct in Canada—includes criteria on using publicly available information about Indigenous communities without community engagement. These criteria are: (1) the information is in the public domain; (2) its access is legal; (3) there is no reasonable expectation of privacy; (4) the data are recorded anonymously; (5) the data cannot be identified as originating from a specific community or segment of the community at large; and (6) any final reports will not impact identity or heritage or persons or communities (Government of Canada, 2023).

However, these criteria fail to address the unique ethical obligations that arise when research involves Indigenous Peoples. Specifically, the framework does not adequately recognize Indigenous Peoples’ inherent rights to data sovereignty and self-determination in the use and interpretation of data relating to our communities. By positioning community engagement as optional in some cases involving public data, the TCPS2 (2022) perpetuates a model in which researchers might assume that consent, consultation, or accountability are sometimes unnecessary—rendering Indigenous communities vulnerable to misrepresentation, extraction, and harm. While the TCPS2 (2022) recognizes the importance of respecting individual privacy, it falls short of communicating to researchers the need to be respectful of the continual collective shared experience, or cultural identity of Indigenous Peoples embedded in publicly accessible information about Indigenous communities.

Contrasting ethical paradigms

Western research ethics are grounded in Liberal individualism and the notion of information as a resource or commodity undifferentiated from one’s property (Coombe and Turcotte, 2012; Hartzog, 2019). This contrasts with Indigenous perspectives that conceptualize knowledge as relational, wholistic, and inseparable from the land, language, stories and shared community experiences (Hayward et al., 2021; Reo, 2019; Tynan, 2024). Within this paradigm, ethical research is relationally accountable and prioritizes collective wellbeing, emphasizing principles such as respect, reciprocity, relevance, responsibility, and relationship—the 5 R’s that guide Indigenous research ethics (Kirkness and Barnhardt, 1991; Kovach, 2009).

Respecting Indigenous Peoples’ right to exist and flourish as distinct cultural entities requires that Canadian research ethics frameworks move beyond simply accommodating Indigenous knowledge within Western paradigms. Rather, they must support the ethical obligation to engage with Indigenous knowledge holders and community members as partners in research—not just as subjects or sources of information. This includes seeking consent at both individual and collective levels and ensuring accurate, respectful representation. Frameworks such as OCAP© and CARE principles underscore Indigenous communities’ right to control how our data is collected, interpreted and shared, aligning with the broader concept of data sovereignty (Carroll et al., 2020; First Nations Information Governance Centre, 2014). Understanding the differences in these foundational conceptualizations of information is vital for contextualizing the significance of community engagement when utilizing publicly available data pertaining to Indigenous Peoples for research purposes.

Indigenous cultural identity and data sovereignty

Data sovereignty is not solely about governance over statistics; it is fundamentally linked to Indigenous Peoples’ right to cultural survival, identity, and self-determination. The United Nations Permanent Forum on Indigenous Issues has repeatedly emphasized the inadequacy of dominant data systems to capture Indigenous worldviews and priorities (Smith, 2016). Indigenous representatives have expressed strong concerns that data collection primarily caters to governmental needs rather than supporting the aspirations of Indigenous Peoples (Kukutai and Taylor, 2016).

In the context of Indigenous data sovereignty, comparing the FAIR (Findable, Accessible, Interoperable, Reusable) and CARE (Collective benefit, Authority to control, Responsibility, Ethics) principles illustrates this tension. The FAIR principles emerged from a scientific “commons” perspective that treats knowledge as a public good and presumes anonymization as sufficient for ethical secondary use. In contrast, the CARE principles are grounded in Indigenous sovereignty and relational worldviews, emphasizing that data remain embedded within community context and that Indigenous rights and responsibilities extend to de-identified or publicly accessible information (Carroll et al., 2020). This distinction highlights a structural barrier in current open data practices where Indigenous governance over those data is diminished or lost, once they enter the public domain.

Indigenous peoples are not merely seeking control over our data; rather, we are advocating for the rights to identity and meaningful participation in decisions related to the collection, interpretation, dissemination, and stewardship of all data that concerns us (Snipp, 2016). The overarching goal extends beyond asserting control to establishing mechanisms for capacity building within Indigenous communities, enabling us to compile and utilize data as a means to actively engage in self-governance and to author our own stories (Schultz and Rainie, 2014; Smith, 2016). Research that claims to genuinely support Indigenous self-determination must do more than avoid harm. It must actively involve Indigenous communities in determining the meaningful and ethical use of the data (Schnarch, 2004; Snipp, 2016). Without this, the continued use of publicly available data about Indigenous Peoples risks reinforcing the very colonial structures that data sovereignty seeks to dismantle.

Community-driven research over research-driven community engagement

Community-based participatory research (CBPR) is widely regarded as a best practice for conducting research in partnership with Indigenous communities (LaVeaux and Christopher, 2009; Wallerstein, 2017). While it is most often associated with the generation of new data, CBPR principles can—and should—also guide how researchers engage with existing publicly available data that involves Indigenous Peoples. At the core of CBPR is the commitment to relational accountability which involves shared decision-making, and community control over research processes (Tobias et al., 2013), all of which are critical for ensuring ethical data use, regardless of whether the data is newly collected or already in the public domain.

One mechanism through which CBPR can support ethical data use is through the establishment and operation of a Community Advisory Board (CAB; Cargo et al., 2011) which can provide Indigenous oversight of projects involving public data. CABs, as practiced in CBPR, offer a community-based governance structure that aligns with data sovereignty principles such as OCAP©. Even when researchers are not collecting new data, CABs can guide decisions about whether and how existing information is used, interpreted, and shared, ensuring that research reflects community values and priorities and remains accountable to the communities involved (First Nations Information Governance Centre, 2014; Smith, 2016). This approach not only governs and protects data but also addresses concerns related to the relevance and usefulness of data by moderating what and how research is conducted (Schnarch, 2004).

Importantly, this approach challenges the common assumption that the public availability of certain data negates the need for engagement or consent. It reframes publicly available data not as free for the taking, but as knowledge still embedded in cultural, historical, and political contexts that require Indigenous input to navigate ethically (Schnarch, 2004; Smith, 2016). In this way, CBPR offers more than just a participatory method—it provides a relational framework for ethical research practice that can extend to secondary data analysis.

Such meaningful engagement with Indigenous communities assures Indigenous decision-making about research methodologies and data usage that is vital for fostering reciprocal relationships, respecting traditional knowledge, and addressing the overarching goal of data sovereignty for Indigenous communities (Hayward et al., 2021).

Of course, meaningful engagement in these processes requires resources such as time, and infrastructure. Many Indigenous communities lack the capacity to participate in research oversight due to historical and ongoing underfunding. Research institutions and funding bodies must support Indigenous communities in building the governance structures (e.g. CABs, community ethics review boards) needed to engage with both primary and secondary data use. Without this support, calls for Indigenous-led, self-determined research remain hollow.

Navigating challenges presented by Western Academia

Despite the ethical imperative for Indigenous-led research, academic and funding systems present structural challenges that work against sustained, community-engaged approaches.

The prevailing research funding landscape often rewards short-term, outcome-driven projects that serve institutional timelines but may not align with Indigenous community priorities. This creates perverse incentives for researchers to rely on publicly available data as low-hanging fruit requiring less relationship-building and fewer ethical obligations. Such practices contradict the principles of relational accountability and compromise the rigour and trustworthiness of the research. Researchers can navigate the tension between the anonymous and de-identified nature of these data by recognizing that anonymization does not fully dissolve relational or ethical responsibilities when working with data pertaining to Indigenous peoples. Even when individual or community identifiers have been removed, data remain connected to collective identities, shared histories and Indigenous lands (Kukutai and Taylor, 2016).

Further tensions emerge in the push for the establishment of large-scale, regional, or national datasets—a hallmark of Western research valued for population generalizability. While these approaches might yield valuable insights at a systemic level, they often obscure local contexts and bypass direct and culturally safe engagement with the very communities they claim to represent. As a result, many researchers turn to regional Indigenous organizations or groups as proxies for community engagement, raising difficult questions about legitimacy, representation, and who is positioned to speak for community in research contexts (Flicker and Worthington, 2012). As data are scaled nationally or globally and direct connections to specific Indigenous communities become more difficult or impossible to trace, ethical navigation requires adherence to principles of collective privacy and Indigenous data sovereignty. Frameworks such as the Māori Data Privacy Framework, which advances the concept of collective privacy, can guide respectful secondary use and promote the application of ongoing consent processes and Indigenous oversight even in large-scale or de-identified datasets (Clark et al., 2025; Kukutai et al., 2023).

From an Indigenous perspective, knowledge is inherently relational and situated. Thus, research that generalizes findings without engaging directly with communities undermines this relational and place-based foundation and risks misrepresenting or overlooking important local contexts and knowledges, and risks perpetuating epistemic harm. When knowledge is removed from its relational context, separated from people, place and accountability, it is transformed into data that can be extracted, decontextualized, and stored in databases, often limiting access or stripping it of meaning for public dissemination (Tynan, 2024).

Conclusion

Until funding models are transformed and structural change occurs, researchers must shoulder the ethical responsibility to engage with Indigenous communities, even when working with publicly available data. Relational accountability is not merely a principle but a practice, one that must be embodied through transparency, humility, and a willingness to share power (Reo, 2019; Tynan, 2024; Wilson, 2016).

We are not advocating for more bureaucratic burden that research already places on both researchers and Indigenous communities, and do not propose additional administrative layers. Rather, we emphasize the value of relationship building processes that are conversational in nature, that allow Indigenous communities to shape research agendas, data interpretation and ultimately the stories that are told about us. As Chapter 9 of the TCPS2 undergoes revision, it is imperative that the updated guidelines explicitly extend relational accountability to include the use of any publicly available data concerning Indigenous Peoples.

Ultimately, ethical research must move beyond minimalist interpretations of consent and legality to embrace a decolonial ethic grounded in Indigenous sovereignty and nationhood. This requires a fundamental reimagining of what counts as rigorous research and a realignment of institutional systems to support community-driven inquiry. Without this shift, the misuse of publicly accessible Indigenous data remains another example of extractive research.