Conducting research with American Indian/Alaska Native (AI/AN) communities can be a rewarding and challenging experience. Researchers working with AI/AN communities often have many questions about how to effectively partner with these communities. Tribal governments are sovereign and therefore have the legal authority to regulate all activities conducted on their lands and with their citizens, including research. Tribes have a variety of research review processes. Some tribes have established their own research review boards, similar to Institutional Review Boards (IRBs). Others partner with outside IRBs to review protocols that come to the community or choose to have the Tribal Council review research requests. American Indian/Alaska Native communities are diverse, with 565 federally recognized tribes and many urban Indian communities as well. They have diverse cultures and spiritual beliefs, and therefore may have varying stances on genetics research. Some common concerns for tribes about genetics research include stigmatization of tribal members, the use of specimens and genetic data, and spiritual issues related to blood or tissue. The resources below provide information about unique considerations in conducting research with tribal communities.
Frequently Asked Questions: Quick overview of the resource guide, including key considerations in decision making around genetics research; research agreements; and the process of informed consent.
Developing a Community-Based Research Orientation: A compendium of resources for researchers, including Indigenous knowledge, ethics, and research; key research policies and protocols; and negotiating research relationships with Native communities.
Cases of How Tribes are Relating to Genetics Research: A set of interactive case studies about how tribes across the US have chosen to deal with genetics research, including both tribes that are participating in genetics studies and those that are not.
Data Sharing and Tribal Communities: Information about AI/AN communities’ concerns regarding data sharing and strategies for addressing these concerns.
Principles and Models for Data Sharing: Ethical principles related to conducting research with AI/AN communities and a template research agreement.
Using Informed Consent to Protect Tribal Citizens in Genetics Research: Ethical considerations in developing informed consent forms for conducting genetics research with tribal nations, including template language.
Research Regulation Toolkit: A set of papers and handouts for tribes about how to regulate research and options for tribal research review processes.