This article investigates key ethical issues arising as part of the LiLACS NZ study, a study of Māori and non‐Māori living into advanced age. LiLACS NZ is the first longitudinal study of advanced ageing in the world that has an Indigenous cohort. In this article, we explore several key issues relating to the concepts of privacy and data access that have become salient in the years since the study data were collected, including (1) issues related to the age‐related diminished health and death of many of the participants in the study and of kaūmatua who were part of the study's cultural advisory group—the Rōpū Kaitiaki—who ensured appropriate tikanga was upheld during the study; (2) the question of who has responsibility for the study now that the Rōpū Kaitiaki no longer exists; and (3) how principles of Indigenous data sovereignty, including repatriation, might be applied to the study now, in its final phase. We propose that cultural understandings of hau (breath), whakapapa (genealogy) and toto (blood) must underpin key future decisions about the end of the study.
Muru‐Lanning et al. (2026) studied this question.