Table 1.
Codes of ethics and IPR and data-sharing agreements for tribal research.
| Source | Title of document | Major points | ||
|---|---|---|---|---|
| Alaska Native Knowledge Network 2000 | Guidelines for Respecting Cultural Knowledge | IPR and research rules (beneficence, protocol reviews); research involving Aboriginal Peoples; First Nations Code of Ethics pamphlet | ||
| American Anthropological Association 1998 | Code of Ethics of the American Anthropological Association | Informed consent, working relationships, respect | ||
| American Indian Law Center, Inc. 1999 | Model Tribal Research Code | Common pitfalls; Indian Health Service IRBs; research protocol review; benefits, rights, and enforcement | ||
| Australian Institute of Aboriginal and Torres Strait Islander Studies 1999 | Guidelines for Ethical Research in Indigenous Studies | Principles of ethical research in Indigenous studies; practical applications, such as full and equal participation, affecting livelihoods, maintaining culture and heritage | ||
| Canadian Institutes for Health Research 2007 | CIHR Guidelines for Health Research Involving Aboriginal People | Guidelines in conducting ethical and culturally competent research involving Aboriginal peoples | ||
| Desert Knowledge Cooperative Research Centre 2009 | DKCRC Aboriginal Knowledge and Intellectual Property Protocol Community Guide | Intellectual property negotiation using Aboriginal paintings; ethics, confidentiality, free prior informed consent, benefit sharing, and research findings; reporting and publishing; protocols and research checklists | ||
| Freeman 2004 | The Protection of Potential Individual Volunteers and Tribal Communities in Research Involving the Indian Health Service | Indian Health Service policies to protect participants and tribal communities; IRB composition; approval of research and publications by tribal communities; tribal informed consent | ||
| Hansen and VanFleet 2003 | Traditional Knowledge and Intellectual Property: A Handbook on Issues and Options for Traditional Knowledge Holders in Protecting Their Intellectual Property and Maintaining Biological Diversity | Unpublished information and intellectual property of Tribes; patent process for native plants; publication ethics | ||
| Indian Health Service 2006; U.S. DHHS 2005 | Human Research Participant Protection in the Indian Health Service | Indian Health Service IRB requirements; implications for 45 CFR 46 (Title 45, Code of Federal Regulations part 46), the Belmont Report, and the instructions of the Indian Health Service IRB(s) with jurisdiction | ||
| Indigenous Peoples Council on Biocolonialism 2000 | Indigenous Research Protection Act | Legal protection for tribes in ownership of research; includes a model academic research agreement | ||
| International Society of Ethnobiology 2006 | ISE Code of Ethics | Framework for decision making and conduct for ethnobiological research and related activities; code of ethics | ||
| Louis and Grossman 2009 | Discussion Paper on Research and Indigenous Peoples, Association of American Geographers | Indigenous knowledge and intellectual property; revision of drafts and findings by tribes | ||
| Macaulay 1994 | Ethics of research in Native communities | Benefits of the research to the community; ownership of data and publication issues | ||
| Macaulay 1998 | Participatory research with Native community of Kahnawake creates innovative code of research ethics | Code of research ethics regarding ownership of data | ||
| Maddocks 1992 | Ethics in Aboriginal research: a model for minorities or for all? | Ownership of data and publication; communication of results | ||
| National Science Foundation 2004a | Guidelines for Improved Cooperation between Arctic Researchers and Northern Communities | Guidelines for Arctic residents to shape research; consideration of subsistence lifestyles; includes checklist | ||
| National Science Foundation 2004b | Principles for the Conduct of Research in the Arctic | Principles for researchers in a broad spectrum of academic fields when conducting research in Arctic or northern regions | ||
| Navajo Nation 1996 | Navajo Nation Human Research Code | Protections for Navajo people; conditions for physicians, researchers, and others doing research within the Navajo Nation | ||
| NCAI Policy Research Center 2010 | Research That Benefits Native People: A Guide for Tribal Leaders | Five-module curriculum; research review policies and boards; selecting suitable research partners; applying values and ethics; understanding program evaluation | ||
| Quigley 2001 | Compilation on environmental health: research ethics issues with Native communities | Partnership guidelines when working with indigenous communities | ||
| Sahota 2007 | Research Regulation in American Indian/Alaska Native Communities: Policy and Practice Considerations | Ethical and legal considerations for American Indian/Alaska Native communities in regulation of research; American Indian/Alaska Native models of research ethics; legal justifications for American Indian/Alaska Native governments to regulate research | ||
| Sharp and Foster 2002 | Community involvement in the ethical review of genetic research: lessons from American Indian and Alaska Native populations | Benefits and challenges of directly involving communities in the ethical review of research | ||
| World Health Organization 2010 | Indigenous People and Participatory Health Research: Planning and Management, Preparing Research Agreements | Issues covered by a research agreement and examples of forms to be used with indigenous communities for an agreement, collective consent, informed consent | ||