Angela Beaton

Engaging Māori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities

Purpose:He Tangata Kei Tua, a relationship model for biobanks, was developed to facilitate best practice in addressing Māori ethical concerns by guiding culturally informed policy and practice for biobanks in relation to governance, operational, and community engagement activities.Methods:The model is based on key issues of relevance to Māori that were identified as part of the Health Research Council of New Zealand–funded research project, Te Mata Ira (2012–2015).Results:This project identified Māori perspectives on biobanking and genetic research, and along with tikanga Māori it developed cultural guidelines for ethical biobanking and genetic research involving biospecimens. The model draws on a foundation of mātauranga (Indigenous knowledge) and tikanga Māori (Māori protocols and practices) and will be useful for biobanks, researchers, ethics committee members, and those who engage in consultation or advice about biobanking in local, regional, national, or international settings.Conclusion:This article describes the model and considers the policy and practice implications for biobanks seeking to address Māori ethical concerns. Although the model has focused on Māori aspirations in the New Zealand context, it provides a framework for considering cultural values in relation to other community or indigenous contexts.Genet Med 19 3, 345–351.

Te Mata Ira—Faces of the Gene: Developing a cultural foundation for biobanking and genomic research involving Māori

Te Mata Ira was a three-year research project (2012–2015) that explored Māori views on genomic research and biobanking for the development of culturally appropriate guidelines. A key component of this process has been to identify Māori concepts that provide cultural reference points for engaging with biobanking and genomic research. These cultural cues provide the basis for describing the cultural logic that underpins engagement in this context in a culturally acceptable manner. This paper outlines the role of two wānanga (workshops) conducted as part of the larger project that were used to make sense of the Māori concepts that emerged from other data-collection activities. The wānanga involved six experts who worked with the research team to make sense of the Māori concepts. The wānanga process created the logic behind the cultural foundation for biobanking and genomic research, providing a basis for understanding Māori concepts, Māori ethical principles and their application to biobanking and genomic research.

Living with economic hardship at the end of life

Background Dying patients and their families often face an added burden of economic hardship, especially if they have become ill in the years before expected retirement. In Australia, patients can fall through the cracks of the national system of social protection because there are gaps in the access to and provision of healthcare and social assistance at the end of life. Design A mixed-method, prospective case study of individuals and their family carers, recruited from a specialist palliative care service in Melbourne, Australia, is presented. Participants were interviewed and followed up over 6 months and completed a 2-week diary of all services used and out-of-pocket costs. Results Mean out-of-pocket spending was

Engaging Maori in Biobanking and Genetic Research: Legal, Ethical, and Policy Challenges

A369 per month (median:

Implementation framework for chronic disease intervention effectiveness in Maori and other indigenous communities

A176, IQR: 356) (

Key informant views on biobanking and genomic research with māori

A1=US

He Pikinga Waiora Implementation Framework: A tool for chronic disease intervention effectiveness in Māori and other indigenous communities

1=€0.73=£0.62; January 2011). Households with economic hardship were more likely to have a patient who was male, had ceased paid employment earlier than expected due to illness, reported a reduction in income due to illness, had less access to financial resources and used significantly fewer health-related community services. Three factors shaped the participants’ experience of hardship: (1) the premature loss of employment capacity and income; (2) the affordability of care and; (3) a welfare system that could not accommodate their complex needs. Conclusions These results demonstrate the multidimensional nature of the economic burden experienced at the end of life and imply the need for nuanced solutions to better support patients and their families. If terminally ill people wish to die at home and are to be supported to do so, policies must take account of the shift in economic burden from the health system onto families.