National Institutes of Health data-sharing policies aim to maximize public benefit derived from genetic studies by increasing research efficiency and the use of a pooled data resource for future studies. While 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 on 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 National Institutes of Health as part of the research process.
This article examines the intercultural context of issues related to genetic research on Native peoples. In particular, the article probes the disconnect between Western and indigenous concepts of property, ownership, and privacy, and examines the harms to Native peoples that may arise from unauthorized uses of blood and tissue samples or the information derived from such samples. The article concludes that existing legal and ethical frameworks are inadequate to address Native peoples' rights to their genetic resources and suggests an intercultural framework for accommodation based on theories of intergroup equality and fundamental human rights.
Over the past 20 years, collaboration has become an essential aspect of archaeological practice in North America. In paying increased attention to the voices of descendant and local communities, archaeologists have become aware of the persistent injustices these often marginalized groups face. Building on growing calls for a responsive and engaged cultural heritage praxis, this forum article brings together a group of Native and non-Native scholars working at the nexus of history, ethnography, archaeology, and law in order to grapple with the role of archaeology in advancing social justice. Contributors to this article touch on a diverse range of critical issues facing Indigenous communities in the United States, including heritage law, decolonization, foodways, community-based participatory research, and pedagogy. Uniting these commentaries is a shared emphasis on research practices that promote Indigenous sovereignty and self-determination. In drawing these case studies together, we articulate a sovereignty-based model of social justice that facilitates Indigenous control over cultural heritage in ways that address their contemporary needs and goals.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.