Discussions on the Navajo Nation
Throughout the late 1990’s and up until 2002, many discussions took place on the Navajo Nation regarding whether or not genetic research should be allowed on the reservation. In response to the discussions and debates on Indigenous issues in ethics and genetics, the Navajo Nation released a 40-minute documentary video entitled “A Gift of Life” in 2002 with guidance from the Navajo Nation Health and Social Services Committee and the Navajo Nation Human Research Review Board (NNHRRB), which is the Institutional Review Board (IRB) of the Navajo Nation. The function of the NNHRRB is to receive and review research protocols, conduct a review process, and to make recommendations and/or approve protocols for all research involving Navajo people. The NNHRRB review process integrates community-based participatory research practices by requiring community partnerships, regular updates to the tribe, and a data return policy at the completion of the research project (Brugge and Missaghian 2006). The NNHRRB receives guidance from the tribal council, the Navajo Nation President, local governing chapters, and the community.
In the film “A Gift of Life,” Navajo physicians, scientists, medicine men, tribal leaders, and community members were interviewed about their views on genetics and genetic research (Brown 2002). Although some Navajo leaders were optimistic about the benefits offered by genetic research, most were wary of the intentions for the work and were cautious about allowing Navajo people to participate in genetic studies. Further, the Diné (Navajo) Medicine Men Association provided advice based on Navajo culture and philosophy to urge the Navajo Nation not to allow genetic research projects to take place. In the end, the Navajo medicine man’s society was instrumental in rejecting the proposed plan to allow genetic research on the Navajo Nation (Maldonado 2007). Navajo medicine men cited legends and cultural taboos associated with tampering with blood and saliva samples as some of the reasons for not wanting to participate in genetic research.
In 2002, the Navajo Nation imposed “a moratorium on genetic research studies within the jurisdiction of the Navajo Nation until such a time that a Navajo Nation Health Research Code has been amended and approved by the Navajo Nation Council” (Council 2002). A moratorium is a legal waiting period set by an authority; in this case the Navajo Nation imposed a moratorium to halt genetic research until a policy, guideline, or law could be adopted. The NNHRRB still reviews and approves research protocols, but cannot and will not approve any protocols related to genetics.
- What are the risks and benefits of having a moratorium on genetic research?
- What policies should be considered if the moratorium were lifted?
How would you create policies addressing the following issues for your tribe?
- Data sharing policies for researchers to share data with other researchers
- Data ownership policies for researchers and for tribes; who owns the data, who controls the data, who has access to the data, and whether or not data should return to the tribe at the end of the study
- Control over how samples can be used, control over dictating which types of research are allowable
- Regular review of research projects in progress