Bibliography of Academic Research in Indian Country

This bibliography provides a representative sample of literature that covers past and present research in Indian Country and critical implications for indigenous community participation and true partnerships, and oversight in research and includes topics on ethics, protocol, community-based participatory research models, review boards, model tribal research protocol development, and perspectives on academic research.

CURRENT PERSPECTIVES ON RESEARCH:

Austin, D., Gerlak, S., Smith, C. (2000). Building Partnerships with Native Americans in Climate-Related Research and Outreach. CLIMAS Report Series, CL2-00, Institute for the Study of Planet Earth, The University of Arizona.

Bowekaty, M.B. and Davis, D.S. (2003) Cultural Issues in Genetic Research with American Indian and Alaskan Native People. IRB: Ethics and Human Research, 25(4):12-15
Bowekaty is a former Governor of Zuni Pueblo, and Davis is a professor of law at Cleveland State University. This article is a transcript of a presentation made in February, 2001 at the American Indian and Alaska Native Genetics Research Policy Formulation Meeting in Rio Rancho, New Mexico. The authors discuss the importance of recognizing Indian perspectives of theft and respect: theft of children taken to boarding schools, theft of knowledge, religious and cultural artifacts; and respect for values, families, religions and cultures. Also important, Bowekaty and Davis suggest, is acknowledging and allowing tribes to be intimately involved in research and be kept aware of all aspects of the process, from the proposal phase to the storage of genetic samples and other materials.

Bowman, N. NCAI Public Policy Position Paper (Final Version) Tribal Sovereignty & Self Determination through Evaluation. www.nbowmanconsulting.com (accessed 6/12/08).

Burhansstipanov, L., Christopher, S., Schumacher, A. (2005). Lessons Learned From Community-Based Participatory Research in Indian Country. Cancer Control (November, 2005): 70-76.
The authors gleaned information from several studies supported by the Robert Wood Johnson Foundation, the Susan G. Komen Breast Cancer Foundation, the National Cancer Institute, and others. They share "lessons learned" from these community-based participatory research projects (CBPR) and suggest that they may be generalizable to other medically underserved communities. The concept of CBPR refers to "a partnership approach to research that equitably involves community members, organization representatives, and researchers in all aspects of the research process." Information from participants over the last few years has indicated that Native people resist participation in studies because they are excluded from researchers' protocols and processes, they don't want to be "guinea pigs," the studies may actually cause them harm, study results are not shared with the communities, and researchers are disrespectful of cultural practices. The authors believe that CBPR may alleviate anxiety and distrust by including Native people in the planning, proposal, decision making, and writing of the research results. A key component of CBPR, as in all aspects of good research, is communication with participants.

Brugge, D., Missaghian, M. (2006) Protecting the Navajo People through tribal regulation of research. Science and Engineering Ethics, Volume 12, Number 3 (508-510).
This essay explores the process and issues related to community collaborative research that involves Native Americans generally, and specifically examines the Navajo Nation’s efforts to regulate research within its jurisdiction.  Researchers need to account for both the experience of Native Americans and their own preconceptions about Native Americans when conducting research about Native Americans. The Navajo Nation institutionalized an approach to protecting members of the nation when it took over Institutional Review Board (IRB) responsibilities from the US Indian Health Service (IHS) in 1996. While written regulations for the Navajo Nation IRB are not dissimilar, and in some ways are less detained than those of the IHS IRB, in practice the Navajo Nation allows less flexibility. Primary examples of this include not allowing expedited review and requiring prepublication review of all manuscripts. Because of its broad mandate, the Navajo Nation IRB may also require review of some projects that would not normally be subject to IRB approval, including investigative journalism and secondary research about Navajo People that does not involve direct data collection from human subjects.

Canadian Institutes of Health Research (CIHR) Guidelines for Health Research
Involving Aboriginal People. "These Guidelines have been prepared by the Ethics Office of the Canadian Institutes of Health Research (CIHR), in conjunction with its Institute of Aboriginal Peoples' Health, to assist researchers and institutions in carrying out ethical and culturally competent research involving Aboriginal people. The intent is to promote health through research that is in keeping with Aboriginal values and traditions. The Guidelines will assist in developing research partnerships that will facilitate and encourage mutually beneficial and culturally competent research. The Guidelines will also promote ethics review that enables and facilitates rather than suppresses or obstructs research."

Davis, S.M. and Reid, R. (1999). Practicing participatory research in American Indian communities. American Journal of Clinical Nutrition. 69 (suppl): 755S-9S.
The purpose of this article is to explore the historical issues that affect research in American Indian communities and examine the implications of these issues as they relate to culturally sensitive, respectful, and appropriate research. Methods include review and analysis of the literature and examination of our collective experience and that of our colleagues. Recommendations are given for conducting culturally sensitive, participatory research. The authors conclude that research efforts must build on the establishment of partnerships between investigators and American Indian communities to ensure accurate findings and analyses and to implement culturally relevant benefits.

First Nations Centre. (2007). Considerations and templates for ethical research practices. Ottawa: National Aboriginal Health Organization. Available at: http://www.naho.ca/english/pub_research.phpThe First Nations Centre (FNC) has developed the Considerations and Templates for Ethical Research Practices toprovide "practical guidance to communities interested in developing their own research policies and protocols. The most useful feature of this guide is its three templates to assist First Nations in the development of research policies and agreements."

Health Research Council of New Zealand. (2002). HRC guidelines on ethics in health research. Available at: http://www.hrc.govt.nz

Hermes, M. (1997, Fall). Going back and forth: Reflections on research methods at a tribal school. Tribal College Journal, 9(2): 23-25.
The concept of reciprocity is defined by Hermes as "going back and forth between the problem, the practice and the community." (23). Although reciprocity is sometimes lacking in traditional Western research methodologies, Hermes suggests that there is a growing trend in Native research to engage in work that provides direct benefits to the community of interest. The growing demand for reciprocity as opposed to exploitation is critical when conducting research with American Indian populations. Hermes recommends a model termed "situated response."

Hillabrant, W. (2002). Research in Indian Country: Challenges and Changes. In Work Group on American Indian Research and Program Evaluation Methodology (AIRPEM), Symposium on Research and Evaluation Methodology: Lifespan Issues Related to American Indians/Alaska Natives with Disabilities. RC 023 923: EDRS. Full Text: www.eric.ed.gov Eric Document # 473271
Hillabrant gives an overview of the current "best practices" and historical miscalculations in research with Indian people. He describes selected settings, circumstances, problems, and barriers to research, and suggests ways to mitigate or overcome these problems. Emerging tribal influence on research in Indian Country is discussed, along with typical tribal requirements of researchers, such as hiring tribal members to assist in research, demonstrating how findings will benefit the tribal community, guaranteeing that research protocols do no harm, guaranteeing confidentiality and anonymity, and garnering tribal approval prior to publishing findings.

Lomawaima, K.T. (2000). Tribal Sovereigns: Reframing Research in American Indian Education. In Harvard Educational Review (70)1:1-19
In this article, Lomawaima analyzes the shift in power between scholars and Indian peoples over the last forty years. She argues that issues such as "access to subjects, data ownership, analysis and interpretation, and control over dissemination of findings all reflect what amounts to a struggle for power and tribal sovereignty." She discusses the past practices of "salvage" ethnography, where as much information and cultural objects as possible were gathered and put on display, as well as the shift to tribal protection of their sacred sites and cultural property. She maintains that respect and responsibility in research can be achieved through the understanding of the historical relationship between Indian tribes and the government, as well as academic institutions, and the growing number of new research protocols developed by tribes.

Lomawaima, K.T. & McCarty, T.L. (2002, December). Reliability, validity and authenticity in American Indian and Alaska Native research. ERIC Digest – RC-02-4. ERIC Clearinghouse on Rural and Small Schools. Full Text: www.eric.ed.gov Document # 470951
The authors pose critical questions regarding the conduct of research with American Indian communities, such as "Why do the research? What factors motivate the researcher? Who will set the research goals?" One of the most important questions they answer is "Whom does the research serve and how will it benefit the local community?"

Manson, S.M. (1997). Ethnographic Methods, Cultural Context, and Mental Illness: Bridging Different Ways of Knowing and Experience. Ethnography and Sociocultural Processes: A Symposium (June, 1997). In Ethos, 25(2):249-258
Manson's commentary illustrates lessons learned in the course of integrating ethnographic, diagnostic, and epidemiologic techniques to study mental health problems among American Indians and Alaska Natives. These lessons demonstrate the benefits of building bridges across different ways of knowing, in terms of disciplines as well as cultures.

National Health and Medical Research Council. (2003) Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research.
"The National Health and Medical Research Council (NHMRC) (www.nhmrc.gov.au) is Australia's peak body for supporting health and medical research; for developing health advice for the Australian community, health professionals and governments; and for providing advice on ethical behaviour in health care and in the conduct of health and medical research."

National Health and Medical Research Council. (2006). Keeping Research on Track: A Guide for Aboriginal and Torres Strait Islander Peoples About Health Research Ethics.

Northwest Portland Area Indian Health Board. (2001). Model Research Protocol. Available at: http://npaihb.org/epicenter/page/irb_guidelines_and_information1/
This document is a research proposal by the Northwest Portland Area Indian Health Board to conduct surveys with Native people in the Portland area. This model research protocol includes sections on protection of privacy and confidentiality, benefits and risks, and respondent consent forms.

Sahota, P.C. (2007). Research Regulation in American Indian /Alaska Native Communities: Policy and Practice Considerations.  National Congress of the American Indian Policy Research Center website: www.ncaiprc.org. (accessed August 29, 2008).

Sahota, P.C. (2008). Research Regulation in American Indian /Alaska Native Communities: A Guide to Reviewing Research Studies.  National Congress of the American Indian Policy Research Center website: www.ncaiprc.org. (accessed October 14, 2008).

Sharp, R.R. and Foster, M.W. (2002). Community Involvement in the Ethical Review of Genetic Research: Lessons from American Indian and Alaska Native Populations. In Environmental Health Perspectives 110(2) April
The National Bioethics Advisory Commission proposes that oversight for research be extended to social groups. The commission recommends that "investigators and review boards a) work directly with community representatives to develop study methods that minimize potential group harms, b) discuss group implications as part of the informed consent process, and c) consider group harms in reporting research results." This article discusses these recommendations in the context of research with American Indian/Alaska Native populations, and how to develop "best practices" for working with Indigenous communities "in the ethical assessment of epidemiologic and environmental health research."

Strong, P.T. (2005). Recent Ethnographic Research on North American Indigenous Peoples. Annual Review of Anthropology 34:253-68
Strong considers significant trends and innovations in research sites and topics, research methodologies, theoretical orientations, and forms of representation. She also assesses the distinctive strengths and limitations posed by ethnographic research for scholars engaging with "significant dimensions of contemporary indigenous life," including struggles for rights, resources, recognition, and language vitality in both national and international arenas.

CONFERENCE PAPERS:

A Meeting Funded Jointly by the National Institute of General Medical Sciences and National Human Genome Research Institute. Rio Rancho, New Mexico – February 7-9, 2001.
 
This meeting was held for the purposes of creating instructional documents and procedures for both researchers and tribal communities that effectively address issues surrounding genetics research in tribal communities. It was designed as a roundtable discussion to focus on tribal expectations and concerns, along with research processes and protocols. A summary report was generated and the following points were emphasized:

• Researchers should never assume that tribal concerns and customs are universal, or that tribal customs and concerns will not be affected by research findings
• Researchers and institutions have not taken adequate steps to minimize or repair the disruption that genetics research has caused to families, individuals, or communities
• The expertise of tribal health offices and IRBs must be considered as valuable resources, not "hurdles to get over."
• Institutions must take responsibility for their researchers, whether students or faculty
• Researchers and institutions must view their research agreements with tribes as contracts to be honored and complied with.
• Researchers need to negotiate with and respect tribal communities
• Thorough explanations of research, technology, benefits, risks, and conflicts of interest are vitally important
• Storage and treatment of biological samples, as well as potential problems, must be addressed early and as soon as possible
• Community involvement and participatory research should be actively developed by researchers
• Respect for the tribal community, its members and customs, is crucial.

Mail, P.D., Conner, J., Conner, C.N.  New Collaborations with Native Americans in the Conduct of Community Research. Health Education & Behavior, 33(2): 148-153. (April, 2006)
This is a report generated from a gathering of experts in the fields of American Indian medicine, Psychology and Behavioral Health, held in Stillwater, Oklahoma on February 20, 2004. The summary report outlined recommendations for project preparation, beginning partnerships, obtaining necessary community cooperation, and the establishment of community IRBs. The overall consensus of the group was that it is necessary for researchers to study the history and culture of the community, and to familiarize themselves with the people and the area prior to proposing research. It is then necessary to form solid partnerships with the "target" community and involve members in aspects of the research by forming a community advisory board and keeping abreast of the political climate and leadership. Authorship of any reports, dissertations, or publications should be agreed upon, including issues of anonymity and privacy. The researcher should pay attention to the development of a "community-positive" and "culturally congruent" approach to the research. It was also suggested that, since many tribes do not have their own Institutional Review Boards for research, academic institutions or technical assistance offices should develop training sessions to facilitate the formation of tribal IRBs for their protection.

RESEARCH RELATED TEXTS:

• Childress, J.F., Meslin, E.M., Shapiro, H.T. (Eds). (2005). Belmont Revisited: Ethical Principles for Research with Human Subjects. Washington, DC: Georgetown University Press.
• Deloria, V., Jr. (1999). Spirit & Reason: The Vine Deloria, Jr., Reader. Golden, CO: Fulcrum Publishing.
• Denzin, N.K. & Lincoln, Y.S. (2005). The SAGE Handbook of Qualitative Research. Thousand Oaks, CA: SAGE Publications, Inc.
• Lemmens, T. & Waring, D.R. (Eds). (2006)  Law and Ethics in Biomedical Research. Toronto: University of Toronto Press.
• Mihesuah, D. (1997). American Indians: Stereotypes & Realities. Gardena, CA: Clarity Press.
• Smith, L. T. ( 2002 [1999 ]). Decolonizing Methodologies. Research and Indigenous Peoples. London: Zed Books Ltd.
• Spicer, E. H. (1992 [1962]). Cycles of Conquest. Tucson: University of Arizona Press.
  Wilkins, D. & Lomawaima, K.T. (2001). Uneven Ground: American Indian Sovereignty and Federal Law. Norman: University of Oklahoma Press

This literature review was developed in 2007 by Ms. Jaime Eyrich, former Educational Outreach Coordinator for NPTAO.