| Literature DB >> 30892943 |
Nanibaa' A Garrison1,2, Māui Hudson3, Leah L Ballantyne4, Ibrahim Garba5,6, Andrew Martinez6, Maile Taualii7, Laura Arbour4,8, Nadine R Caron9,10,11, Stephanie Carroll Rainie6,12.
Abstract
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.Entities:
Keywords: Indigenous; bioethics; data governance; data sovereignty; genomics; policy
Mesh:
Year: 2019 PMID: 30892943 DOI: 10.1146/annurev-genom-083118-015434
Source DB: PubMed Journal: Annu Rev Genomics Hum Genet ISSN: 1527-8204 Impact factor: 8.929