This article presents a review of 14 case studies and articles of research ethics issues in the conduct of environmental and public health research with Native American and other indigenous populations. The purpose of this review is to highlight new practices in the ethical conduct of research with native community populations. The findings from this review can promote more dialogue and policy development on the issue of community protections in research. Formal guidelines exist in ethical codes for individual rights as human subjects, but there is a lack of development on community rights in the ethics of research. This review illustrates how community-based participatory research practices can provide working guidelines that can overcome past research harms. More important, the compilations of guidelines offer tested field methods for improving the ethical conduct of research with native community populations.
Native Americans residing in a broad region downwind from the Nevada Test Site during the 1950s and 1960s received significant radiation exposures from nuclear weapons testing. Because of differences in diet, activities, and housing, their radiation exposures are only very imperfectly represented in the Department of Energy dose reconstructions. There are important missing pathways, including exposures to radioactive iodine from eating small game. The dose reconstruction model assumptions about cattle feeding practices across a year are unlikely to apply to the native communities as are other model assumptions about diet. Thus exposures from drinking milk and eating vegetables have not yet been properly estimated for these communities. Through consultations with members of the affected communities, these deficiencies could be corrected and the dose reconstruction extended to Native Americans. An illustration of the feasibility of extending the dose reconstruction is provided by a sample calculation to estimate radiation exposures to the thyroid from eating radio-iodine-contaminated rabbit thyroids after the Sedan test. The illustration is continued with a discussion of how the calculation results may be used to make estimates for other tests and other locations.
The Nuclear Risk Management for Native Communities (NRMNC) project is a collaborative academic, community-based, tribal project, which conducts the three essential elements of participatory research: research, education, and community action, named here as "community-based hazards management." This article describes the goals and outcomes of this effort in assisting Native American communities in Nevada, Utah, and Southern California affected by nuclear fallout from U.S. weapons testing in the 1950s and 1960s. The NRMNC project sought to create new models for dealing with health research and risk communication needs in an environmental justice setting. The following results of this four-year project are discussed: (1) building a community-based environmental health infrastructure, (2) building community capacities through workshops and educational materials, (3) conducting both technical and community research, and (4) facilitating community-based hazards management planning. We describe such positive outcomes as the improvements in the scientific database through participatory research activities, the development of equitable relationships between scientists and community members, and the creation of a sustaining program intervention for long-term community needs. The project's outcomes are presented as an expansion to limited scientific risk management outcomes in the environmental health field that often are solely quantitative and lack relevance to community concerns about environmental health impacts from contamination.
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