Guidelines for biobanking and genomic research with Māori

December 5th, 2017

In October 2016, two separate guidelines focused on biobanking and genomic research in Māori contexts were launched. The volumes entitled “He Tangata Kei Tua: Guidelines for Biobanking with Māori” and “Te Mata Ira: Guidelines for Genomic Research with Māori” were developed out of a three year Health Research Council of New Zealand (HRC) funded project completed in 2016 involving a team of Māori researchers led by Maui Hudson out of the University of Waikato.

Māori issues identified in the literature in relation to genetic research include matters around culture, governance, consenting processes, social equipoise, and the distribution of risks and benefits, tissue storage, and non-empathetic analysis and interpretation. The establishment of the Middlemore Tissue Bank (Auckland) (now administered by the University of Auckland), Rare Diseases Tissue Bank (Dunedin), Melanoma Tissue Bank (Dunedin) and the Centre for Brain Research Biobank (Auckland) illustrate a shift towards developing more formal tissue storage facilities and the provision of more transparent consent processes for the on-going use of tissue in genetic and genomic research.

Furthermore, a recent Nature Reviews Genetics paper reinforced the call for biobanks to address issues of trust, benefit sharing, data security, privacy, and practicing reciprocity. Māori have identified these very same issues within the Te Mata Ira project and ultimately used them to frame the two guidelines. The cultural and ethical issues that Māori encounter when they choose to be involved in genetic, genomic and biobanking research are specifically addressed in these documents where a primary purpose is to define behaviours that support the protection of collective Māori interests.

To view the guidelines click the following links:

He-Tangata-Kei-Tua-Biobanking-Guidelines

Te-Mata-Ira-Genome-Research-Guidelines