Genetics Resource Center

NCAI's PRC received funding for two years from the National Institutes of Health National Human Genome Research Institute to create a web-based resource guide about genetics research for American Indian and Alaska Native communities. The primary target audiences for the project are tribal leaders and American Indian and Alaska Native community members. The goal of this project is to provide Native communities with the tools they need to confidently make their own informed decisions about genetics research.

This guide and NCAI do not seek to influence tribes either way about whether or not to participate in genetics research. Rather, the resource guide will provide tribes with the tools to make their own informed and thoughtful decisions about genetics research participation.As of January 2012, the majority of the content has been authored for the guide (see below for contributors).  Review of the content was conducted by NIH staff and a select group of Native scholars, lawyers, tribal leaders, tribal program staff, and directors of Native non-profit organizations.  Community review of the guide was completed in June 2012. The guide was released in September 2012 and is available online.

The NCAI Policy Research Center is working with the National Museum of the American Indian and the National Human Genome Research Institute to host a one-day symposium in July 2014 on opportunities and issues facing American Indian and Alaska Native communities in relation to genetics and genomics research. This symposium will be a part of the Smithsonian’s Genome: Unlocking Life’s Code exhibit.

A Spectrum of Perspectives: Native Peoples and Genetic Research