Principles and models for data sharing agreements with American Indian/Alaska Native communities


Type:  Guidelines/Recommendations
Author:  Warren-Mears, V.
Publisher:  Northwest Portland Area Indian Health Board Tribal Epidemiology Center

American Indian/Alaska Native (AI/AN) tribal governments are sovereign entities with inherent authority to regulate all affairs on research. This paper aims to provide guidance for researchers and their tribal partners on how to develop data sharing agreements. It discusses research ethics, tribal sovereignty over research, research agreements (including a model data sharing agreement) and data sharing and ownership.