A comparative analysis of Indigenous research guidelines to inform genomic research in Indigenous communities

BACKGROUND: Genetic research has potential benefits for improving health, such as identifying molecular characteristics of a disease, understanding disease prevalence and treatment, and developing treatments tailored to patients based on their individual genetic characteristics of their disease. Indigenous people are often targeted for genetic research because genes are easier to study in communities isolated from large-scale crossbreeding. While Indigenous communities remain the focal point of many genomic studies, some result in harm and unethical practice. Unfortunately, the harms of poorly formulated and unethical research involving Indigenous people have created barriers to participation that prevent critical and lifesaving research. These harms have led a number of Indigenous communities to develop guidelines for engaging with researchers to assist in safely bridging the gap between genetic research and Indigenous peoples. METHODS: A comparative analysis was performed to identify best research practices and recommendations for Indigenous groups from four countries: Australia, Canada, New Zealand and the United States. RESULTS: Results suggest the need for research ethics policies for the world's Indigenous people. Indigenous groups are most vulnerable to research exploitation and harm; therefore identifying principles that work for Indigenous people will lead to best practices for all populations. CONCLUSIONS: Development and implementation of best practices informed by ethics guidelines in Australia, Canada, New Zealand and the U.S. may be helpful to advise Indigenous leaders, policy makers, and researchers. Comparative analyses are a useful tool for identifying areas for further work in developing research ethics policy for Indigenous communities.