Ethical Data Practices and Indigenous Data Sovereignty – Practice Flashcards

Flashcards covering key concepts from the lecture on ethical data practices, Indigenous data sovereignty (Maori data sovereignty), data diversity, and related frameworks (UNDRIP, Nagoya Protocol, CARE, FAIR, SAFES, Ngati Kanga Paihiri).

What is data sovereignty?

The idea that data is governed by the laws of the country or region where it is stored; Indigenous data sovereignty expands this to the rights of Indigenous peoples over the collection, ownership, and use of their data; Māori data sovereignty is the New Zealand expression of these rights.

Is data neutral and objective in scientific practice?

No. Data is shaped by human choices and context; bias can enter during collection, experimental design, inclusion/exclusion, definitions, methods, funding, and power structures; data is not neutral.

What are the CARE principles?

Collective Benefit, Authority to Control, Responsibility, and Ethics; frameworks designed to ensure data practices respect Indigenous rights and interests.

How do CARE principles differ from FAIR principles?

FAIR focuses on the technical properties of data (Findable, Accessible, Interoperable, Reusable); CARE centers on the rights, governance, and benefits of Indigenous peoples in relation to data.

What is Ngati Kanga Paihiri and how does it relate to IDI data in NZ?

A New Zealand framework for culturally appropriate and ethical data use; supports transparent community involvement and alignment with Tiriti/UNDRIP; aligns with the SAFES framework for IDI access.

What are the SAFES conditions?

Safe People, Safe Projects, Safe Settings, Safe Data, Safe Outputs; five conditions used to govern data access in New Zealand’s IDI.

What is UNDRIP and why is it important for Indigenous data sovereignty?

The United Nations Declaration on the Rights of Indigenous Peoples; a global framework setting minimum standards for Indigenous rights and well-being; provides moral authority and guidance for rights in data governance.

What is the Nagoya Protocol?

An international agreement that supports fair and equitable access to genetic resources and sharing of benefits arising from their use.

How does Te Tiriti Waitangi relate to Indigenous data sovereignty in NZ?

New Zealand’s founding treaty; aligned with UNDRIP; underpins partnership, protections, and participation in data governance and interpretation of rights.

What percentage of GWAS studies include data from individuals not of European ancestry?

About 12% of GWAS studies include data from individuals not of European ancestry.

What percentage of GWAS studies include data derived from individuals of Indigenous ancestry?

Less than 1% of GWAS studies include data from individuals of Indigenous ancestry.

What are the consequences of biased genomic reference data?

Missed disease variants in underrepresented populations; unknown differences in drug metabolism; potential misdiagnosis and widening health disparities; research may not reflect global diversity.

Name a well-known case illustrating Indigenous data ethics problems in the US.

The Harborsupai (Harborsuai) case, where samples were used for unconsented studies; led to a lawsuit and a moratorium on genetic research in the tribe.

What is the All of Us project?

An NIH-led initiative to collect genomic, environmental, and lifestyle data from over a million U.S. residents; faced tribal consultation challenges and led to calls for tribal oversight.

What is the Silent Genomes Project?

A Canadian initiative to fill genomic data gaps for Indigenous communities; co-directed by Nadine Caron; aims to improve representation and equity in genomic data.

What is the Native BioData Consortium?

A U.S.-based Indigenous-led initiative focused on governance and equitable use of Indigenous genomic data.

What is the meaning of the phrase 'not about us without us'?

A core Maori data sovereignty idea: communities must be involved in decisions about data that relate to them.

What are the main CARE principles (at a high level) used with FAIR data?

CARE emphasizes collective benefit, authority to control, responsibility, and ethics to guide data use alongside the FAIR data principles.

Why is open data not always appropriate for Indigenous communities?

Open data can maximize reuse, but may compromise community rights and benefits; data openness should be balanced with cultural protocols and protections—open as possible, closed as necessary.

What do Pukinga and Whakapapa mean in the Ngati Kanga Paihiri framework?

Pukinga: knowledge and expertise required to conduct research appropriately; Whakapapa: having an existing relationship with the data.

What do Wananga, Kaitiaki, Wairua, Mauri, Tapu, and NOA refer to?

Wananga: institutional infrastructure for culturally appropriate data use; Kaitiaki: guardianship against misuse; Wairua: alignment of data use with community values; Mauri: data’s uniqueness or vitality; Tapu: data sensitivities; NOA: appropriateness of data accessibility.

What is the role of ethics approvals in funding for research projects?

Researchers must describe how data will be collected, stored, used, and disseminated to obtain funding, ensuring compliance with ethical and legal requirements.