ABSTRACT
Alaska Native (AN) and American Indian (AI) people are underrepresented in health research, yet many decline to participate in studies due to past researcher misconduct. Southcentral Foundation (SCF), an Alaska Native-owned and operated health care organization, is transforming the relationship between researchers and the tribal community by making trust and accountability required features of health research in AN/AI communities. In 1998, SCF assumed ownership from the federal government of health services for AN/AI people in south central Alaska and transformed the health system into a relationship-based model of care. This change reimagines how researchers interact with tribal communities and established community oversight of all health research conducted with AN/AI people in the region. We describe the SCF research review process, which requires tribal approval of the research concept, full proposal, and dissemination products, as well as local institutional review board approval, and a researcher-signed contract. This review evaluates research through the lens of tribal principles, practices, and priorities. The SCF example provides a framework for other tribes and organizations seeking to reshape the future of health research in AN/AI communities.
Subject(s)
/psychology , Biomedical Research/standards , Indians, North American/psychology , Indians, North American/statistics & numerical data , Ownership/statistics & numerical data , Personal Autonomy , Adult , Alaska , Female , Humans , Male , Middle Aged , Minority Groups/psychology , Minority Groups/statistics & numerical dataABSTRACT
The data-sharing policies of the National Institutes of Health aim to maximize public benefit derived from genetic studies by increasing research efficiency and use of a pooled data resource for future studies. Although broad access to data may lead to benefits for populations underrepresented in genetic studies, such as indigenous groups, tribes have ownership interest in their data. The Northwest-Alaska Pharmacogenetic Research Network, a partnership involving tribal organizations and universities conducting basic and translational pharmacogenetic research, convened a meeting to discuss the collection, management, and secondary use of research data, and of the processes surrounding access to data stored in federal repositories. This article reports the tribal perspectives that emerged from the dialogue and discusses the implications of tribal government sovereign status on research agreements and data-sharing negotiations. There is strong tribal support for efficient research processes that expedite the benefits from collaborative research, but there is also a need for data-sharing procedures that take into account tribal sovereignty and appropriate oversight of research--such as tribally based research review processes and review of draft manuscripts. We also note specific ways in which accountability could be encouraged by the National Institutes of Health as part of the research process.
Subject(s)
Community Networks/organization & administration , Information Dissemination/legislation & jurisprudence , Translational Research, Biomedical/legislation & jurisprudence , Community Networks/legislation & jurisprudence , Humans , Indians, North American , Information Dissemination/ethics , National Institutes of Health (U.S.) , United States , UniversitiesABSTRACT
BACKGROUND: In 2001, the National Cancer Institute (NCI) funded a project to develop methods to recruit American Indian and Alaska Native (AI/AN) adults for a prospective cohort study of chronic disease risk and protective factors. OBJECTIVE: We describe how the use of community-based participatory research (CBPR) principles led to more effective study design and implementation in a study in Alaska. METHODS: CBPR elements included collaboration between researchers and tribes at all stages of the project, capacity building through training AI/AN staff in research methods, and knowledge dissemination through presentations, newsletters, and individual and community health feedback based on results of the study. RESULTS: Between March 2004 and August 2006, 3,821 AI/ AN adults from 26 Alaskan communities enrolled in the study. Retention in the study is high, with over 88% of participants successfully completing a 2-year follow-up questionnaire. CONCLUSION: CBPR methods have facilitated effective development of study methods, recruitment and retention. Efforts are on-going to continue work with this unique AI/AN research participant community.
