文章基本信息

标题：A Comparative Analysis of Indigenous Research Guidelines to Inform Genomic Research in Indigenous Communities
本地全文：下载
作者：Nicole K. Taniguchi ; Maile Taualii ; Jay Maddock 等
期刊名称：International Indigenous Policy Journal
电子版ISSN：1916-5781
出版年度：2012
卷号：3
期号：1
出版社：University of Western Ontario
摘要：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 individual genetic characteristics of their disease. Indigenous people are often targeted for genetic research because genes are easier to study in communities that practice endogamy. Therefore, populations perceived to be more homogenous, such as Indigenous peoples, are ideal for genetic studies. 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.