Rebecca A. Tsosie

Exploring Pathways to Trust: A Tribal Perspective on Data Sharing

The data-sharing policies of the National Institutes of Health aim to maximize public benefit derived from genetic studies by increasing research efficiency and use of a pooled data resource for future studies. Although broad access to data may lead to benefits for populations underrepresented in genetic studies, such as indigenous groups, tribes have ownership interest in their data. The Northwest-Alaska Pharmacogenetic Research Network, a partnership involving tribal organizations and universities conducting basic and translational pharmacogenetic research, convened a meeting to discuss the collection, management, and secondary use of research data, and of the processes surrounding access to data stored in federal repositories. This article reports the tribal perspectives that emerged from the dialogue and discusses the implications of tribal government sovereign status on research agreements and data-sharing negotiations. There is strong tribal support for efficient research processes that expedite the benefits from collaborative research, but there is also a need for data-sharing procedures that take into account tribal sovereignty and appropriate oversight of research—such as tribally based research review processes and review of draft manuscripts. We also note specific ways in which accountability could be encouraged by the National Institutes of Health as part of the research process.Genet Med 16 11, 820–826.

Unique Challenges Facing Southwestern Tribes

The Southwestern United States is home to 182 federally recognized tribes (Federal Register 2010, Figure 17.1). California has the largest number of tribes (109), and the largest Native American population in the country (Table 17.1). Arizona, New Mexico, Colorado, and Utah are also home to seven of the most populous tribes, with populations ranging from 10,000 to over 300,000 (U.S. Census 2010). Nine tribes in the Southwest are considered “large land-holding tribes,” five of which are among the ten largest reservations in the United States, ranging in size from 600,000 to 15 million acres (Federal Register 2010). More than one-third of the land in Arizona is tribal land.