Wabanaki Research Review Board

能力建设项目2：摘要 许多美国印第安人社区对研究持怀疑态度，甚至坦率地表示不信任，部分原因是 研究历来是在社区内或对社区进行的，而不是与社区一起进行的。“直升机研究”是一个术语 在原住民社区中用来描述那些飞来飞去，只停留足够长的时间来收集数据的调查人员。 虽然研究人员获得了资金和出版物的奖励，但土著人民继续与贫困作斗争 健康差距。原住民社区和研究人员之间的紧张关系通常源于冲突 关于研究主题的优先次序、研究议程以及数据的使用和所有权的意见，特别是 关于同意、保密、标本的二次使用、向捐赠者返还结果等问题， 用于出版物的预先审查和数据共享。鉴于这种可以理解的担忧，调查人员 已经建议考虑群体伤害的概念，并扩大对部落研究的监管监督 除了对个人的保护外，还包括对社会群体的保护。其他重要关切包括 土著社区的污名化、研究的相关性和适用性及其对未来的益处 代，并需要研究，社区成员可以理解的信息。这些 人们的关切导致不愿从事研究，除非社区本身参加一个 研究的设计、实施和监管。当这些问题通过监管得到解决时， 研究，参与社区，提高研究人员的文化能力，以及研究的透明度 研究可以是富有成果的。不幸情况的遗留问题和由此产生的关切， 催生了一个部落监督和监管的新时代，表现在越来越多的部落研究 审查委员会及其在印度城市卫生组织中的对应机构。因此，Wabanaki Public 健康，一个部落建立和指导的公共卫生区，服务于缅因州4个联邦承认的部落， 成立Wabanaki研究审查委员会。研究审查委员会将促进及时和 周到的评论，帮助研究人员浏览管理人类受试者研究的法规，并作为一个 Wabanaki公共卫生和4个部落当前和未来监管需求的综合途径。我们 具体目标是：1）建立一个部落研究审查委员会，以增强4 Wabanaki的能力 部落自治，支持和教育调查人员和Wabanaki部落成员，并尽量减少研究- 相关的社区危害; 2）确保数据的完整性，遵守部落和联邦政策， 3）教育Wabanaki公共卫生领导人和工作人员，并确定维持 研究审查委员会在赠款资金结束后。Wabanaki研究审查委员会承诺， 对Wabanaki公共卫生规范研究和建立区域研究的努力产生了深远的影响 企业.能力建设项目2的合作设计将鼓励高质量的、部落管理的、 以社区为基础的研究，改善了4个Wabanaki部落的健康状况。

CAPACITY BUILDING PROJECT 2: ABSTRACT Many American Indian communities view research with skepticism and even frank mistrust, in part because research has historically been done in or on communities rather than with them. “Helicopter research” is a term used in Native communities to describe investigators who fly in and out, staying only long enough to collect data. While researchers are rewarded with funding and publications, Native people continue to struggle with poverty and health disparities. Tensions between Native communities and researchers generally arise from conflicting views about the priority of topics to study, research agendas, and the use and ownership of data, particularly regarding issues of consent, confidentiality, secondary use of specimens, returning results to donors, the need for advance review of publications, and data sharing. In light of such understandable concerns, investigators have been advised to consider the concept of group harm and to extend regulatory oversight for tribal research beyond the protection of individuals to include the protection of social groups. Other important concerns include stigmatization of Native communities, relevance and applicability of the studies and their benefit for future generations, and the need for information on research that community members can understand. These concerns have led to reluctance to engage in research, unless the communities themselves participate in a study’s design, implementation, and regulation. When these concerns are addressed through regulating research, engaging communities, improving cultural competency of researchers, and transparency of research procedures, research can be fruitful. The legacy of unfortunate circumstances and the resulting concerns have spawned a new era of tribal oversight and regulation, manifested by the growing number of tribal Research Review Boards, and their counterparts in urban Indian health organizations. Accordingly, Wabanaki Public Health, a tribally founded and directed public health district serving the 4 federally recognized tribes in Maine, seeks to establish a Wabanaki Research Review Board. The Research Review Board will facilitate timely and thoughtful reviews, help investigators navigate regulations governing human subjects research, and serve as an integrated pathway for current and future regulatory needs of Wabanaki Public Health and the 4 tribes. Our Specific Aims are to: 1) Build a tribal Research Review Board that will augment the capacity of the 4 Wabanaki tribes to self-govern, support and educate investigators and Wabanaki tribal members, and minimize research- related community harm; 2) Ensure integrity of data, compliance with tribal and federal policies, and protection of human subjects; and 3) Educate Wabanaki Public Health leaders and staff and identify strategies to sustain the Research Review Board after grant funding ends. The Wabanaki Research Review Board promises to have far reaching impact on Wabanaki Public Health’s efforts to regulate research and build the regional research enterprise. The collaborative design of Capacity Building Project 2 will encourage high-quality, tribally regulated, community-based research that improves the health of the 4 Wabanaki tribes.