Genetics Research and American Indian and Alaska Native Communities
Genetics research is a fast-growing and complicated area. American Indian/Alaska Native (AI/AN) tribal leaders and citizens have raised many questions and concerns about genetics research. They have also expressed an interest in learning more about the science behind genetics and how other tribal communities are making decisions related to genetics research. This resource guide serves to answer these questions, to highlight cases that describe how some tribes are thinking about genetics research, and to provide information and tools for tribes and citizens as they consider their own stances on genetics research. Each person, family, and community is unique and therefore will have a different set of considerations regarding research.
This resource guide was developed by the National Congress of American Indians Policy Research Center with support from the National Human Genome Research Institute (NHGRI), which provided funding for the project. The content does not represent the official position of the National Human Genome Research Institute, National Institutes of Health or the Department of Health and Human Services. In this resource guide, the NCAI Policy Research Center does not take a stance in favor of or against American Indian and Alaska Native peoples or communities participating in genetics research. As sovereign entities, tribal governments must make those decisions for themselves. The goal of this guide is to provide tribal leaders and AI/AN peoples with the tools and information they need to make their own informed decisions about genetics research. The authors of the resource guide sections include Native authors with expertise in genetics research related to Native communities.
Genetics research includes a spectrum of study types, including how genes influence human health, genetic variation between individuals and groups of people, and research on ancient human migration patterns. “Genes” are units of information passed down from parents to child. They are molecules made up of DNA (deoxyribonucleic acid). “Genomics” is a type of research that examines the “genome” of an individual. The “genome” is all of a person’s DNA, or their genetic blueprint. More detailed information about the basics of genetics and genomics research is available in the Basics of Genetics section of the guide.