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Ethical Stakes for Past, Present, and Prospective Tuberculosis Isolate Research Towards a Multicultural Data

A Anderson1, M Meher2, Z Maroof2

  • 1Te Kupenga Hauora Māori, University of Auckland, Auckland, New Zealand. a.anderson@auckland.ac.nz.

Journal of Bioethical Inquiry
|May 27, 2024
PubMed

Insights

This study addresses ethical concerns in tuberculosis (TB) research sample collection in New Zealand. Culturally informed guidelines are needed to ensure community engagement and respect Indigenous data sovereignty.

Area of Science:

  • Genomics
  • Infectious Diseases
  • Public Health Ethics

Background:

  • Tuberculosis (TB) disproportionately affects specific ethnic groups in Aotearoa New Zealand.
  • Genome sequencing of TB isolates offers insights into strains and transmission for targeted interventions.
  • Current TB sample collection for research lacks culturally appropriate ethical considerations.

Purpose of the Study:

  • To explore community perspectives on the collection and governance of TB isolate samples for research.
  • To advocate for culturally nuanced and community-driven ethical frameworks in TB research.
  • To integrate Indigenous data sovereignty principles into research governance models.

Main Methods:

  • Qualitative kaupapa Māori-consistent study design.
  • Preliminary discussions with Māori, Pacific, and Afghan communities in New Zealand.
  • Analysis of community concerns regarding TB sample collection and use.

Main Results:

  • Participants highlighted significant concerns about current research practices.
  • Community input is crucial for developing ethical guidelines for TB sample management.
  • There is a need for flexible, meaningful, and culturally sensitive consultative processes.

Conclusions:

  • Ethical TB research requires culturally informed, community-generated guidelines.
  • Respecting Indigenous data sovereignty and kāwanatanga is essential for multicultural data governance.
  • Future research governance must address the physical and symbolic impacts of TB and stigma.
Keywords:
Indigenous data sovereigntyIsolate samplesKaupapa Māori researchTuberculosis research

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