Genetic Research & the Navajo Nation: Context of & Attitudes to the Moratorium

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PROJECT SUMMARY AND ABSTRACT The Navajo Nation placed a moratorium on genetic research studies in 2002, yet the tribe has high rates of genetic diseases and disorders. Historical distrust, fears of exploitation, and limited understanding of genetic research have played a role in the placement of the moratorium, yet no formal studies have been carried out to date to identify the key concerns, needs and desires of the Navajo regarding genetic research. Seven years after the issuance of the moratorium on genetic research, it is not clear whether a more permanent research policy will be developed, what it would look like, or whether attitudes of members of the Navajo Nation and policy makers have since changed. Although the Navajo Nation has a unique legal status, the concerns and attitudes towards genetic research among its members reflect, to some extent, more general issues about the relationship between biomedical scientists and participants in human subjects research, including the meaning of individual informed consent, community consent and engagement, the advent of patient advocacy and the experiences of individuals with rare diseases or common diseases like Type 2 Diabetes. Specific Aim 1: To map the context and ethical issues around the moratorium on genetic studies: Several key individuals such as physicians, scientists, political leaders, and Navajo medicine men were instrumental in informing the NNHRRB in enacting the moratorium on genetic studies. I will examine documents and interview individuals in order to map the ethical and cultural issues around the moratorium on genetic studies. Specific Aim 2: To interview Navajo individuals on the current attitudes and opinions related to genetic research: The larger Navajo community was not actively engaged in the conversation on genetic studies and the moratorium. After the moratorium was put in place, it was not publicized very widely, so the level of current knowledge about it is unknown. Describing the landscape of often competing views on the moratorium will be a central theme of my proposed research on attitudes toward genetic studies. The impact of this research project could have implications for genetics and formal policy on genetic research studies on the Navajo Nation or in other indigenous groups.