Research Regulation

Research that Benefits Native People: A Guide for Tribal Leaders

Tribal nations have sovereignty over research that takes place on tribal lands and with tribal citizens. In order to support tribal nations and American Indian and Alaska Native communities working to develop research oversight processes and policies, the NCAI Policy Research Center developed the Research that Benefits Native People: A Guide for Tribal Leaders curriculum.

Curriculum Project

With financial support from the Administration for Native Americans, the NCAI Policy Research Center partnered with the First American Land-grant College and Organization Network (FALCON) and the National Indian Child Welfare Association (NICWA) to create a curriculum and in-person training to equip tribal leaders, Native students, and other Native community members to understand and manage research and program evaluation. Participants are presented with typical research scenarios faced by tribal leadership and staff. The curriculum was developed in response to requests from tribal leaders who wanted resources to make better decisions about the proposed research in their communities and was launched in September 2009 following pilot use in several tribal communities. The five modules of this research curriculum have been field tested and are being used with tribal communities at their request and as funding is available. It emphasizes the validity of Indigenous knowledge while highlighting the benefits of western research methods when used in an ethical and community-informed manner.

Why undertake the project? 

Access to research and data allows tribal leaders to make informed decisions, be proactive about shaping the future of their communities, secure funding for programs to benefit the community, and refine the programs currently offered to tribal citizens. However, many Native people are wary of research and do not trust researchers. This is largely due to the fact that ‘research’ generally reminds Native people of the myriad projects conducted by outsiders that did not benefit Native communities and that have resulted in harm to Native peoples.

As policy and planning increasing rely on research-based evidence, Native communities are engaging more with research and program evaluation activities. However, the research process requires specific approaches and methods that are necessary to gauge the impact (positive or negative) and benefit of particular projects. Through this curriculum, tribal leaders and Native communities can build their capacity to engage with research, allowing them to access and understand the data that will benefit their communities.

About the curriculum

This research curriculum is intended to be a resource for tribal leadership as they fulfill their role as responsible and proactive stewards of their Native communities. The curriculum helps start a dialogue in reconciling Indigenous and Western worldviews and provides practical information on how to engage with research. The five learning modules broadly cover the most critical concerns facing Native communities interested in research. The curriculum was originally designed to be delivered in-person. Modules include:

 

Module 1: Foundations of Research 

This module addresses the following key concepts:

  • Introducing the basic tribal values concerning research that will be emphasized throughout the curriculum

  • Introducing the context in which a tribal leader may need a working knowledge of research and related issues

 

Module 2: Managing the Design and Planning of Research 

This module addresses the following key concepts:

  • Designing a research study, including how-to lessons and practical considerations

  • Guiding a research design process

  • Developing a research plan

 

Module 3: Ethics as a Guide for Managing Research 

This module addresses the following key concepts:

  • Knowing the basic ethical considerations for conducting research

  • Developing skills to apply ethical considerations to research

 

Module 4: Conducting Research with Others 

This module addresses the following concepts:

  • Identifying the basic considerations involved in evaluating a research partner

  • Identifying key characteristics of tribal research policy, Institutional Review Boards, cooperative agreements, and research agreements

  • Introducing a skill set for contributing to a successful partnership

 

Module 5: Understanding Evaluation 

This module addresses the following key concepts:

  • Implementing “Program Evaluation”

  • Validating basic principles of culturally competent evaluation in tribal communities

  • Identifying what evaluation can be expected to measure

 

Other Resources on Research Regulation

 

NCAI Policy Research Center - Research Policy Updates on the Common Rule (2019-2020). This series of research policy updates were developed to provide a brief overview of some of the recent changes in the Department of Health and Human Services Federal Policy for the Protection of Human Subjects (Common Rule). Access the series on the NCAI Policy Research Center Publications Page: http://bit.ly/2P8Xnu6 

‘Walk Softly and Listen Carefully’: Building Research Relationships with Tribal Communities Report (2012), developedin partnership with Montana State University’s Center for Native Health Partnerships, serves as a resource guide to provide insights for researchers committed to developing research that benefits Native peoples.  With vignettes of actual tribal research partnerships, input from tribal leaders and staff, and an annotated bibliography with research resources, this guide provides a range of insights for researchers interested in developing meaningful research in partnership with tribes.

Research Regulation in American Indian/Alaska Native Communities: Policy and Practice Considerations describes different ways to institutionalize research regulation in communities. This paper reviews the legal basis for tribal regulation of research. It then describes different kinds of research review board structures communities might use and the pros and cons of each board structure. Possible review board options include Institutional Review Boards (IRBs), community advisory boards (CABs), and other review board structures. This paper also discusses jurisdictional issues, such as what kinds of research should be reviewed by community boards and how these boards might relate to federal and university research regulatory bodies. Finally, a brief discussion on methods for enforcing community research review decisions is included in this paper.

Research Regulation in American Indian/Alaska Native Communities: A Guide to Reviewing Research Studies provides a detailed discussion of each stage of research review from study proposals to publications. This paper is meant to serve as an interactive guide for communities to consult when they are reviewing research studies and includes a detailed checklist that can be used in the review process. The paper begins with a description of components that should be included in research proposals, such as informed consent procedures, data collection/storage methods, and budget/funding sources. Next, the paper describes issues communities may wish to consider when reviewing research proposals including control of data through written contracts and tribal law. Finally, the paper discusses community review of ongoing research studies and research publications, which can be a complex and challenging process.

Research Regulation Options for American Indian/Alaska Native Communities describes several different possible structures for AI/AN community research review processes.

Research Review Checklist for American Indian and Alaska Native Communities provides an guide for communities reviewing research proposals and other agreements.

Community-Based Participatory Research in American Indian and Alaska Native Communities discusses the usefulness of CBPR for Native communities and presents several case studies of CBPR in tribal communities.

Research in Native American Communities in the Genetics Age: Can the Federal Data Sharing Statute of General Applicability and Tribal Control of Research be Reconciled? (Ron Whitener, University of Washington Law School)

Model Research Codes and Contracts

Training Resources for Research Review Boards

For further information on research regulation resources available at the NCAI Policy Research Center, please contact research@ncai.org.