Rosalina D. James, Abigail EchoHawk, Adrian Dominguez, Leah Dodge, and Ralph Forquera are with the Urban Indian Health Institute, Seattle Indian Health Board, Seattle, WA. Kathleen M. West, Maile Taualii, and Wylie Burke are with the Department of Bioethics and Humanities, University of Washington, Seattle. Katrina G. Claw and Kenneth Thummel are with the Department of Pharmaceutics, University of Washington, Seattle.
Am J Public Health. 2018 Dec;108(12):1613-1616. doi: 10.2105/AJPH.2018.304708. Epub 2018 Oct 25.
American Indian and Alaska Native (AI/AN) communities harbor understandable mistrust of research. Outside researchers have historically controlled processes, promulgating conclusions and recommended policies with virtually no input from the communities studied. Reservation-based communities can apply sovereignty rights conferred by the federal government to change this research trajectory. Many tribes now require review and approval before allowing research activities to occur, in part through the development of regulatory codes and oversight measures. Tribal oversight ensures that research is directed toward questions of importance to the community and that results are returned in ways that optimize problem solving. Unfortunately, tribal governance protections do not always extend to AI/ANs residing in urban environments. Although they represent the majority of AI/ANs, urban Indians face an ongoing struggle for visibility and access to health care. It is against this backdrop that urban Indians suffer disproportionate health problems. Improved efforts to ensure responsible research with urban Indian populations requires attention to community engagement, research oversight, and capacity building. We consider strategies to offset these limitations and develop a foundation for responsible research with urban Indians.
美洲印第安人和阿拉斯加原住民(AI/AN)社区对研究持有可以理解的不信任。外部研究人员历来控制着研究过程,发布结论并提出建议政策,而几乎没有来自所研究社区的意见。以保留地为基础的社区可以利用联邦政府赋予的主权权利来改变这一研究轨迹。现在,许多部落都要求在允许研究活动发生之前进行审查和批准,部分是通过制定监管法规和监督措施来实现的。部落监督确保研究针对对社区重要的问题进行,并以优化解决问题的方式返回结果。不幸的是,部落治理保护并不总是适用于居住在城市环境中的 AI/AN。尽管他们占 AI/AN 的大多数,但城市印第安人仍在为获得可见度和医疗保健而苦苦挣扎。正是在这种背景下,城市印第安人面临着不成比例的健康问题。要改善对城市印第安人进行负责任的研究的努力,需要关注社区参与、研究监督和能力建设。我们考虑了抵消这些限制的策略,并为与城市印第安人进行负责任的研究奠定了基础。