Aleksandra Badaczewska

Aleksandra Badaczewska

Alex is a Research Scientist IV at the Genome Informatics Facility at Iowa State University. Her academic background is in Chemistry and Biotechnology, with a Ph.D. in Computational Biology and broad experience in programming and designing web applications. She develops a comprehensive collection of highly customizable visualization solutions for Bioinformatics and supports software optimization for the USDA Geospatial analyses.

DataScience Workbook / 09: Project Management / 3. Resource Management / 3.1. Data Management / 3.1.1. Open Science policy / CARE principles


Principles to ensure data management is centered on Collective benefit, Authority to control, Responsibility, and Ethics, especially in the context of Indigenous data sovereignty.

Introduction

The CARE Principles for Indigenous Data Governance focus specifically on the ethical use and stewardship of data related to Indigenous peoples. These are guidelines that really highlight how important data is for empowering Indigenous communities, helping them maintain their sovereignty and self-determination.

The CARE Principles were developed to complement the (Findable, Accessible, Interoperable, and Reusable), which are all about making data easy to find, access, share, and use in the scientific world. FAIR is widely recognized in the scientific community for data management.

In a nutshell, the CARE Principles are there to make sure that when it comes to data about Indigenous peoples, everything is done in a way that’s fair, respectful, and beneficial to them. It’s all about promoting fairness and justice in data governance.

CARE Principles

So, CARE is all about the ethical side of handling data about Indigenous peoples.

They consist of four main components:

acronym principle message meaning
C Collective Benefit Data ecosystems should be designed and function in ways that enable Indigenous peoples to derive benefits from the data. This involves ensuring that data collection and use support the priorities, needs, and values of Indigenous communities. The idea is to align data practices with what Indigenous peoples need and value, i.e., when data is collected and used, it actually helps those communities.
A Authority to Control Indigenous peoples should have authority and control over data that pertains to them. This includes control over how data is collected, accessed, used, and shared. It’s about recognizing and respecting the inherent rights of Indigenous communities to govern their own data.
R Responsibility Those who manage data related to Indigenous communities have a responsibility to ensure it is used in ways that are respectful, ethical, and beneficial to Indigenous peoples. Anyone handling data related to Indigenous communities needs to be really careful and respectful about it. It’s about being accountable for the impact of their actions.
E Ethics The management and use of data should be guided by ethical considerations that respect Indigenous cultural values and norms. It’s crucial to avoid any practices that could harm Indigenous peoples and their rights.

Who? When? Why?

  • Who proposed CARE principles?

The CARE Principles for Indigenous Data Governance were proposed by the Global Indigenous Data Alliance (GIDA). GIDA is an organization that advocates for the rights of Indigenous peoples in the context of data collection and use. The principles were introduced in 2019 to address specific needs and concerns of Indigenous communities in relation to data governance.

  • Why were these rules implemented?

The main reasons for proposing the CARE Principles were:

1. Recognition of Indigenous Rights and Interests
Traditional data governance models often overlooked the unique rights, interests, and cultural sensitivities of Indigenous peoples.

2. Complementing the FAIR Principles
While the FAIR Principles provide a broad framework for scientific data management, they don’t specifically address the cultural, ethical, and rights-based concerns relevant to Indigenous data.

3. Promoting Equity and Justice
The CARE Principles aim to promote more equitable and just practices in data governance, ensuring that Indigenous peoples benefit from and have authority over their data.

4. Ethical Data Practices
The principles emphasize ethical considerations in data management, stressing the importance of respecting Indigenous cultural values and norms in data practices.

Why does it matter to scientists?

The CARE Principles are important for scientists as they guide ethical research practices, foster collaborative partnerships, and ensure respect for Indigenous data sovereignty, ultimately leading to higher quality research that is beneficial and respectful to Indigenous communities.

  • Ethical Research Practices
    This includes respecting Indigenous knowledge systems, values, and rights. Scientists engaging with Indigenous data are required to consider these aspects, ensuring their research is respectful, consensual, and beneficial to the communities involved.

  • Collaborative Partnerships
    Scientists working with Indigenous data are encouraged to form collaborative partnerships with Indigenous communities. This means involving Indigenous people in the decision-making processes and ensuring their perspectives are integral to the research.

  • Data Sovereignty and Control
    For scientists, this means recognizing the rights of Indigenous communities to govern the collection, access, use, and sharing of their data. This is a significant shift from traditional research practices where data control typically resides with researchers or institutions.

  • Enhanced Data Quality and Relevance
    When Indigenous communities are involved in the research process, the data collected is more likely to be comprehensive, culturally sensitive, and accurate, enhancing the overall quality and applicability of research.

  • Legal and Funding Compliance
    Increasingly, funding agencies and regulatory bodies are emphasizing ethical data practices, including those outlined in the CARE Principles. Scientists may find that compliance with these principles is necessary for securing funding and for ethical clearance of their research projects.

When working on a project involving Indigenous communities’ data, researchers should take several essential steps to ensure ethical and respectful engagement. These steps align with the CARE Principles and broader ethical research practices:

  1. Establish partnerships and engagement.
  2. Obtain informed consent from the community.
  3. Understand and Respect Cultural Protocols.
  4. Design the research in a way that it benefits the Indigenous community.
  5. Recognize and respect the data sovereignty of the Indigenous community.
  6. Work with the community to establish collaborative data management practices.
  7. Keep the community informed throughout the research process. Share results with the community.
  8. Aim to establish long-term relationships with the community beyond the lifespan of a single project.
  9. Ensure the research project complies with institutional ethical requirements and any specific guidelines or policies related to research involving Indigenous communities.
  10. Be open to learning from the community and continuously reflect on your practices as a researcher.