Genomic Research Through an Indigenous Lens: Understanding the Expectations

Annu Rev Genomics Hum Genet. 2019 Aug 31;20:495-517. doi: 10.1146/annurev-genom-083118-015434. Epub 2019 Mar 20.


Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples' engagement with genomicresearch was hampered by a lack of standardized guidelines and institutional partnerships, resulting in group harms. This article provides a comparative analysis of research guidelines from Canada, New Zealand, Australia, and the United States that pertain to Indigenous peoples. The goals of the analysis are to identify areas that need attention, support Indigenous-led governance, and promote the development of a model research policy framework for genomic research and health care that has international relevance for Indigenous peoples.

Keywords: Indigenous; bioethics; data governance; data sovereignty; genomics; policy.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, Non-P.H.S.
  • Review

MeSH terms

  • Australia
  • Canada
  • Genomics / ethics*
  • Genomics / legislation & jurisprudence
  • Humans
  • New Zealand
  • Population Groups / genetics*
  • Practice Guidelines as Topic
  • United States