Literature DB >> 30116069

Genomic medicine must reduce, not compound, health inequities: the case for hauora-enhancing genomic resources for New Zealand.

Stephen P Robertson1, Jennie Harre Hindmarsh2, Sarah Berry3, Vicky A Cameron4, Murray P Cox5, Ofa Dewes6, Robert N Doughty7, George Gray8, Jessie C Jacobsen9, Albert Laurence10, Elizabeth Matisoo-Smith11, Susan Morton12, Andrew N Shelling13, Dianne Sika-Paotonu14, Anna Rolleston15, Jonathan R Skinner16, Russell G Snell17, Andrew Sporle18, Cristin Print19, Tony R Merriman20, Maui Hudson21, Philip Wilcox22.   

Abstract

Precision medicine seeks to draw on data from both individuals and populations across disparate domains to influence and support diagnosis, management and prevention in healthcare at the level of the individual patient and their family/whānau. Central to this initiative is incorporating the effects of the inherent variation that lies within genomes and can influence health outcomes. Identifying and interpreting such variation requires an accurate, valid and representative dataset to firstly define what variants are present and then assess the potential relevance for the health of a person, their family/whānau and the wider community to which they belong. Globally the variation embedded within genomes differs enormously and has been shaped by the size, constitution, historical origins and evolutionary history of their source populations. Māori, and more broadly Pacific peoples, differ substantially in terms of genomic variation compared to the more closely studied European and Asian populations. In the absence of accurate genomic information from Māori and Pacific populations, the precise interpretation of genomic data and the success and benefits of genomic medicine will be disproportionately less for those Māori and Pacific peoples. In this viewpoint article we, as a group of healthcare professionals, researchers and scientists, present a case for assembling genomic resources that catalogue the characteristics of the genomes of New Zealanders, with an emphasis on peoples of Māori and Polynesian ancestry, as a healthcare imperative. In proposing the creation of these resources, we note that their governance and management must be led by iwi and Māori and Pacific representatives. Assembling a genomic resource must be informed by cultural concepts and values most especially understanding that, at a physical and spiritual level, whakapapa is embodied within the DNA of a person. Therefore DNA and genomic data that connects to whakapapa (genealogy) is considered a taonga (something precious and significant), and its storage, utilisation and interpretation is a culturally significant activity. Furthermore, such resources are not proposed to primarily enable comparisons between those with Māori and broader Pacific ancestries and other Aotearoa peoples but to place an understanding of the genetic contributors to their health outcomes in a valid context. Ongoing oversight and governance of such taonga by Māori and Pacific representatives will maximise hauora (health) while also minimising the risk of misuse of this information.

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Mesh:

Year:  2018        PMID: 30116069

Source DB:  PubMed          Journal:  N Z Med J        ISSN: 0028-8446


  5 in total

Review 1.  Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data.

Authors:  Maui Hudson; Nanibaa' A Garrison; Rogena Sterling; Nadine R Caron; Keolu Fox; Joseph Yracheta; Jane Anderson; Phil Wilcox; Laura Arbour; Alex Brown; Maile Taualii; Tahu Kukutai; Rodney Haring; Ben Te Aika; Gareth S Baynam; Peter K Dearden; David Chagné; Ripan S Malhi; Ibrahim Garba; Nicki Tiffin; Deborah Bolnick; Matthew Stott; Anna K Rolleston; Leah L Ballantyne; Ray Lovett; Dominique David-Chavez; Andrew Martinez; Andrew Sporle; Maggie Walter; Jeff Reading; Stephanie Russo Carroll
Journal:  Nat Rev Genet       Date:  2020-04-06       Impact factor: 53.242

2.  Genotype-phenotype correlations in CPT1A deficiency detected by newborn screening in Pacific populations.

Authors:  Isaac Bernhardt; Emma Glamuzina; Leah K Dowsett; Dianne Webster; Detlef Knoll; Kevin Carpenter; Michael J Bennett; Michelle Maeda; Callum Wilson
Journal:  JIMD Rep       Date:  2022-03-26

Review 3.  Nutrigenomics and Nutrigenetics Research in New Zealand, and Its Relevance and Application to Gastrointestinal Health.

Authors:  Lynnette Ferguson; Matthew Barnett
Journal:  Nutrients       Date:  2022-04-22       Impact factor: 6.706

4.  Uncovering social structures and informational prejudices to reduce inequity in delivery and uptake of new molecular technologies.

Authors:  Sara Filoche; Peter Stone; Fiona Cram; Sondra Bacharach; Anthony Dowell; Dianne Sika-Paotonu; Angela Beard; Judy Ormandy; Christina Buchanan; Michelle Thunders; Kevin Dew
Journal:  J Med Ethics       Date:  2020-01-07       Impact factor: 2.903

5.  Indigenous Genomic Databases: Pragmatic Considerations and Cultural Contexts.

Authors:  Nadine Rena Caron; Meck Chongo; Maui Hudson; Laura Arbour; Wyeth W Wasserman; Stephen Robertson; Solenne Correard; Phillip Wilcox
Journal:  Front Public Health       Date:  2020-04-24
  5 in total

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