文章基本信息

标题：Promoting Ethical Research With American Indian and Alaska Native People Living in Urban Areas
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作者：Nicole P. Yuan ; Jami Bartgis ; Deirdre Demers 等
期刊名称：American journal of public health
印刷版ISSN：0090-0036
出版年度：2014
卷号：104
期号：11
页码：2085-2091
DOI：10.2105/AJPH.2014.302027
语种：English
出版社：American Public Health Association
摘要：Most health research with American Indian and Alaska Native (AI/AN) people has focused on tribal communities on reservation lands. Few studies have been conducted with AI/AN people living in urban settings despite their documented health disparities compared with other urban populations. There are unique considerations for working with this population. Engaging key stakeholders, including urban Indian health organization leaders, tribal leaders, research scientists and administrators, and policymakers, is critical to promoting ethical research and enhancing capacity of urban AI/AN communities. Recommendations for their involvement may facilitate an open dialogue and promote the development of implementation strategies. Future collaborations are also necessary for establishing research policies aimed at improving the health of the urban AI/AN population. In 2010, 5.2 million people reported being American Indian or Alaska Native (AI/AN), either alone or in combination with 1 or more races. 1 The majority lived in urban areas, with the proportion increasing from 38% in 1970 to 61% in 2000 2 to 71% in 2010. 3 Despite this trend, the urban AI/AN population is sometimes referred to as an “invisible minority” because their needs are generally overlooked compared with those of other ethnic minority populations. 4 The federal government is one audience that fails to fully recognize urban AI/AN people, as is evident by a history of racial misclassification. Some data sources use “AI/AN only” for identification and exclude individuals who report multiple races, reducing the accuracy and usefulness of urban AI/AN health assessments. 5 Funding agencies also contribute to experiences of invisibility. The Indian Health Service (IHS) funds urban Indian health organizations (UIHOs) that provide primary medical care and public health case management services for approximately 51 000 urban AI/AN people who do not have access to resources supported by IHS and tribally operated health care facilities. 6 There are, however, only 34 UIHOs in 41 US sites 7 and they have a history of being underfunded. In fiscal year 2012, the 34 UIHOs received a total of $42 984 000 or about 1% of the total IHS budget of 4.3 billion. 6 In addition, the scientific community has failed to adequately involve urban AI/AN people in research. A PubMed literature review revealed that less than 3% of published AI/AN articles contained empirical data with the urban population (J. Bartgis, PhD, unpublished data, April 2013), which was striking when one considers the proportion of AI/AN people living in urban settings. The need for more research is also based on documented socioeconomic and health disparities. In 2009, AI/AN people who lived in UIHO service areas were more likely not to have obtained a high-school diploma or general equivalency diploma compared with the general population (23.9% vs 16.2%). 8 More than 23% of urban AI/AN people lived below the federal poverty level, compared with 13.6% of the general population. 8 Between 2005 and 2009, AI/AN people living in UIHO service areas were more likely to report being diagnosed with diabetes, smoking cigarettes, and binge drinking, and experienced higher rates of alcohol-induced death compared with the general population living in the same areas. 8 To address these problems, we need more comprehensive and accurate data, 9 innovative approaches to small population research, and funding opportunities. 10 We seek to promote ethical research and enhance the research capacity of urban AI/AN communities. We have identified unique considerations for working with this population, including differences from other urban populations and reservation-based communities. We provide recommendations for key stakeholders, including UIHO leaders, tribal leaders, research scientists and administrators, and policymakers. Because of the complex issues raised, we do not provide step-by-step guidelines for implementing each recommendation. Instead, we seek to increase awareness, elicit feedback, and facilitate open dialogue among all partners who are committed to improving the lives of urban AI/AN people. Strong collaborations are needed for future development of research policies and implementation strategies at local and national levels that will have lasting benefits for urban AI/AN communities.