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年暂停了遗传研究，但该部落的遗传疾病和疾病发病率很高。历史上的不信任、对剥削的恐惧以及对遗传研究的有限了解在暂停的实施中发挥了作用，但迄今为止尚未进行正式研究，以确定纳瓦霍人对遗传研究的主要关切、需要和愿望。在暂停基因研究七年后，尚不清楚是否会制定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。虽然纳瓦霍民族有着独特的法律的地位，但其成员对遗传研究的关注和态度在某种程度上反映了关于生物医学科学家与人类受试者研究参与者之间关系的更普遍的问题，包括个人知情同意，社区同意和参与的含义，患者倡导的出现以及患有罕见疾病或常见疾病（如2型糖尿病）的个人的经历。具体目标1：绘制暂停遗传研究的背景和伦理问题：医生、科学家、政治领导人和纳瓦霍族医学家等几个关键人物在向国家人权委员会通报暂停遗传研究方面发挥了重要作用。我将检查文件和采访个人，以绘制围绕暂停遗传研究的伦理和文化问题。具体目标二：采访纳瓦霍人对基因研究的态度和观点：较大的纳瓦霍社区没有积极参与关于基因研究和暂停的对话。在暂停实施之后，并没有广为宣传，因此目前对暂停的了解程度不得而知。描述关于暂停的经常相互竞争的观点的景观将是我对遗传研究态度的拟议研究的中心主题。这一研究项目的影响可能对遗传学和关于纳瓦霍民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. !