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

描述(申请人提供)：纳瓦霍民族在2002年暂停了基因研究，但该部落的遗传病和失调率很高。历史上的不信任、对剥削的恐惧和对基因研究的有限理解在暂停遗传研究方面发挥了作用，但迄今为止还没有进行正式研究来确定纳瓦霍人对基因研究的关键关切、需求和愿望。在基因研究暂停发布七年后，目前还不清楚是否会制定更永久的研究政策，它会是什么样子，也不清楚纳瓦霍民族成员和政策制定者的态度自那以后是否发生了变化。尽管纳瓦霍民族拥有独特的法律地位，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类研究参与者之间关系的更一般问题，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常见疾病(如2型糖尿病)的个人的经历。具体目标1：绘制关于暂停基因研究的背景和伦理问题：医生、科学家、政治领导人和纳瓦霍人等几个关键人物在向国家人权委员会通报暂停基因研究方面发挥了重要作用。我将审查文件并采访个人，以绘制出围绕暂停基因研究的伦理和文化问题。具体目标2：就目前与基因研究有关的态度和意见采访纳瓦霍人：更大的纳瓦霍人社区没有积极参与关于基因研究和暂停的对话。禁令实施后，没有得到非常广泛的宣传，因此目前对它的了解程度尚不清楚。描述关于暂停的观点往往相互矛盾的图景，将是我提出的关于对遗传学研究态度的研究的中心主题。这一研究项目的影响可能会对关于纳瓦霍民族或其他土著群体的遗传研究的遗传学和正式政策产生影响。好了！

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. !