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Genet Med. 2014 Nov;16(11):820-6. doi: 10.1038/gim.2014.47. Epub 2014 May 15.

Exploring pathways to trust: a tribal perspective on data sharing.

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Department of Bioethics and Humanities, University of Washington, Seattle, Washington, USA.
Indian Legal Program, Sandra Day O'Conner College of Law, Arizona State University, Tempe, Arizona, USA.
Department of Psychiatry, Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Department of Psychiatry and Behavioral Sciences, University of Washington, Seattle, Washington, USA.
Southcentral Foundation, Anchorage, Alaska, USA.
Inter Tribal Council of Arizona, Phoenix, Arizona, USA.
Yukon-Kuskokwim Health Corporation, Bethel, Alaska, USA.
Confederated Salish and Kootenai Tribes, Pablo, Montana, USA.
Indigenous Wellness Research Institute, School of Social Work, University of Washington, Seattle, Washington, USA.
Native American Law Center, University of Washington, Seattle, Washington, USA.


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.

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