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

描述（由申请人提供）：纳瓦霍族在2002年暂停了基因研究，但该部落的遗传疾病和失调率很高。历史上的不信任，对剥削的恐惧，以及对基因研究的有限理解都在暂停研究的过程中发挥了作用，但迄今为止还没有进行正式的研究来确定纳瓦霍人对基因研究的主要关注，需求和愿望。在暂停基因研究的禁令颁布七年后，目前还不清楚是否会制定出一项更永久的研究政策，它会是什么样子，或者纳瓦霍族成员和政策制定者的态度是否已经改变。虽然纳瓦霍民族具有独特的法律地位，但其成员对基因研究的关切和态度在某种程度上反映了生物医学科学家与人体受试者研究参与者之间关系的更普遍问题，包括个人知情同意的意义、社区同意和参与、患者倡导的出现以及患有罕见疾病或2型糖尿病等常见疾病的个人的经历。具体目标1：绘制暂停基因研究的背景和伦理问题：一些关键人物，如医生、科学家、政治领导人和纳瓦霍人药师，在通知NNHRRB颁布暂停基因研究方面发挥了重要作用。我将检查文件和采访个人，以便绘制出有关暂停基因研究的伦理和文化问题。具体目标2：采访纳瓦霍人目前对基因研究的态度和观点：较大的纳瓦霍社区并没有积极参与关于基因研究和暂停的对话。禁令实施后，并没有广泛宣传，所以目前对它的了解程度是未知的。在我提出的关于对基因研究的态度的研究中，描述关于暂停的经常相互竞争的观点的景观将是一个中心主题。这项研究项目的影响可能对遗传学和关于纳瓦霍族或其他土著群体遗传研究的正式政策产生影响。！

DESCRIPTION (provided by applicant): 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. !