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A key goal for the NIA, the ADRC Program, and NACC, as highlighted in the NIA 2020–2025 Strategic Directions for Research, is to expand the participation of American Indian and Alaska Native (AI/AN) communities in ADRD research.
As a first step towards meeting this goal, the American Indian and Alaska Native ADRD Data Sovereignty Advisory Group (AI/AN Advisory Group) has created the Guidelines for Ethical and Respectful Research Partnerships. These guidelines are meant to help ADRD researchers and ADRCs honor Tribal sovereignty and ensure responsible management of data, samples, and genetic information from AI/AN participants, their communities, and Tribal Nations. (The AI/AN Advisory Group, in collaboration with NIA and NACC, will release a formal set of policies in the future.)
Because ADRCs conduct research and train scientists, they are the public face of the ADRC Program. They have the opportunity and challenge of engaging with local communities in developing successful and culturally responsive healthcare and research. Following the AI/AN Research Guidelines can help ADRCs drive better health outcomes for AI/AN communities.
Purpose
The purpose of the AI/AN Research Guidelines is to increase the ability of ADRCs and affiliated researchers to engage in respectful, ethical, and mutually beneficial research partnerships with AI/AN communities and Tribal Nations.
Historical Context
Before working with AI/AN communities, it's critical that researchers understand that medical research has historically been conducted without the free, prior, and informed consent (FPIC) of Tribal Nations and AI/AN communities and much of this research is now recognized as having violated human rights and research ethics. These violations include a history of forced sterilization of AI/AN women, the unconsented use of biological samples from Tribal citizens, and the unconsented release of research data to the media.
This history of egregiously unethical and harmful research conducted on Indigenous communities and their biodata without their full consent has catalyzed distrust of federal institutions and researchers and, in response, the emergence of the IDSov movement. Despite making progress towards more ethical research through the use of community-based participatory research models, health researchers continue to fail Tribal Nations and AI/AN communities by overvaluing individual consent and devaluing community consent, both of which impact community health and wellbeing.
Accordingly, repairing trust and improving relationships between researchers and Tribal Nations, Native Health Organizations (NHO), and AI/AN communities are integral to increasing AI/AN community willingness to participate in research. Recent AI/AN-led research highlights the importance of creating healthcare and research systems that respect Tribal sovereignty, Tribal Law, Trust responsibilities, and Data Sovereignty.
Goals
- Educate all parties on historical and contemporary issues impacting the success of research programs with AI/AN communities;
- Increase institutional and researcher respect, responsiveness, and responsibility to Tribal Nations, Native Health Organizations (NHOs), and AI/AN community well-being;
- Support AI/AN Data Sovereignty;
- Identify current and future opportunities for partnerships with Tribal Nations, NHOs, and AI/AN communities.
AI/AN Research Guidelines
Tribal Research Laws, Regulations, and Policies
Each AI/AN Tribe has a right to establish and enforce Tribal laws, regulations, and policies for biomedical research that respond to Tribal needs and expectations.
Data Usage
Ensure that data are collected, stored, accessed, managed, shared, and disposed of in accordance with Tribal Nation and/or Tribal IRB requirements and any formal agreements. Throughout data use and dissemination, maintain transparency, respect Tribal data governance, and appropriately recognize AI/AN communities for their contributions to the research.
Community Engagement
Community engagement with AI/AN communities and Tribal Nations requires building trusted, long-term partnerships that respect Tribal governance, priorities, and knowledge systems. This includes establishing appropriate approvals through Tribal leadership and IRBs, engaging communities early to identify shared goals and community benefits, incorporating AI/AN perspectives throughout the research process, and involving community members in meaningful research
Presentation and Publication
Create and share communications plans and review publicly disseminated communications with Tribal representatives. Always respect AI/AN worldviews and values in all publications.
Building Trust and Establishing Equitable Relationships
- Participate – when invited – in community events such as powwows, art festivals, and health fairs.
- Host educational sessions and periodic updates on research progress and offer to present research findings at community forums and conferences related to health and aging.
- Build sustainable and respectful partnerships with Tribal representatives, such as Tribal Engagement Officers, to ensure compliance with Tribal Nations' processes and protocols.
- Support AI/AN-led research and expand ADRD research opportunities for AI/AN scholars by collaborating with AI/AN graduate students, Tribal Colleges and Universities (TCUs), non-profit organizations, and Tribal Epidemiology Centers (TECs).
- Establish AI/AN Advisory Groups when initiating research in AI/AN communities.
- Provide institution leadership with specialized training on AI/AN populations.
- Adhere to specific additional requirements for data handling, sharing, destruction, and research publication.
- Embrace AI/AN perspectives on well-being.
- Foster strong community relations.
AI/AN Advisory Group
The AI/AN Advisory Group was formed in <YEAR> by <MECHANISM> and includes AI/AN ADRD researchers, external evaluators, and collaborators.
Cole Allick, PhD, MHA
Ronny Bell, PhD
Nicole Bowman-Farrell, PhD
Kyle Conniff, PhD
Felina Cordova-Marks, PhD
Steven Harris, PhDc
J. Neil Henderson, PhD
Jordan Lewis, PhD
Evey Maho, MPH
Melvina McCabe, MD
Lauren W. Y. McLester-Davis, PhD, Chair
Nazune Menka, JD
Tassy Parker, PhD
Cliff Whetung, PhD, MSW
