Research in Native American Communities in the Genetics Age: Can the Federal Data Sharing Statute of General Applicability and Tribal Control of Research Be Reconciled?

58 Pages Posted: 29 May 2014

See all articles by Ron Whitener

Ron Whitener

University of Washington - School of Law

Date Written: 2010

Abstract

Since colonization, indigenous populations in the U.S. have been an enticing subject for researchers. Geographic continuity with traditional homelands and traceable blood quantum requirements for tribal membership provide a unique connection to the past for researchers studying an array of topics from epidemiology to religion. In recent years, the explosion of discoveries in the field of genomic research has led to even greater interest in the U.S. native communities by commercial and scientific interests.

This research offers the potential for many promising advances in healthcare. Genetic testing can help to define disease risks as a guide to treatment and prevention. Pharmacogenetic testing — the development of tests that assess an individual’s potential to metabolize and respond to specific drugs — offers opportunities to increase the safety and efficacy of drug treatment. Genetics research is also unlocking new and promising treatments through examination of the molecular biology of specific disease conditions. Without research participation from Native American individuals, this population may be excluded from some of the health benefits of genetic research which could help reduce the health disparities between Native Americans and other U.S. populations.

But researcher access to Native Americans is problematic. Unethical and undesirable research practices — alongside the history of wars, plagues and broken treaties inflicted on Native Americans and tribal governments — have led to distrust and conflict between Native populations and outside researchers. An additional variable must be factored into the usual ethical calculus for human research subjects: the sovereign authority of federally-recognized tribal governments over Native American research participants and researchers themselves. This article examines several case studies highlighting the history of research conflicts to provide a context for current Native American concerns. It looks at the federal law related to sharing data collected with federal funding and NIH’s implementation of that law, including specific data sharing policies related to genetic research. Finally it discusses potential strategies to preempt the data sharing laws through judicial exceptions that could create tribal frameworks for research conducted under tribal regulatory authority and for sharing of tribal data.

Keywords: research ethics, medical research, Native Americans, American Indians, data sharing, Shelby Amendment, NIH, National Institutes of Health, anthropology, health disparities, federally funded research

Suggested Citation

Whitener, Ron, Research in Native American Communities in the Genetics Age: Can the Federal Data Sharing Statute of General Applicability and Tribal Control of Research Be Reconciled? (2010). Journal of Technology Law & Policy, Vol. 15, No. 2, pp. 217-74, 2010, Available at SSRN: https://ssrn.com/abstract=2433254

Ron Whitener (Contact Author)

University of Washington - School of Law ( email )

William H. Gates Hall
Box 353020
Seattle, WA 98105-3020
United States

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