Doctoral Dissertation Research: Negotiating a New Sovereignty: Politics and Ethics of Medical/Genetics Research in an American Indian Community

研究生Puneet Sahota在布拉德利斯通纳博士的监督下，将在美国印第安社区调查医学遗传学研究（疾病遗传基础研究）的政治和伦理，该社区正在与遗传学研究机构建立创新伙伴关系。对疾病的遗传基础的研究对美洲印第安人来说是一个有争议的问题。一些部落领导人担心遗传学数据可能会被用来破坏部落对美国“本土”的说法，而另一些人则认为医学/遗传学研究是治疗不成比例地影响美洲印第安人的疾病的重要来源。部落越来越多地寻求控制研究议程、血液/组织样本的处理以及研究人员开发的药物或诊断测试的专利。拟议的项目将研究生物医学，医学/遗传学研究的一个有影响力但研究不足的方面，并将探讨美洲印第安部落的领导人和成员如何谈判对新生物技术的集体立场。研究人员将通过参与观察部落内部关于医学/遗传学研究的讨论以及部落与遗传学研究所之间的谈判，研究部落与知识产权法和联邦研究监管模式的关系。通过对60名部落成员和15名部落领导人进行半结构化访谈，该项目还将探讨部落成员过去在医学/遗传学研究方面的经历如何影响他们对疾病“遗传风险”等生物医学概念的看法。在这些访谈中，还将收集有关部落成员对未来医学/遗传学研究项目的期望的数据，特别是与传统生物伦理问题有关的数据，如血液/组织样本的所有权、对研究志愿者的经济补偿以及公平获得医疗保健。

Graduate student Puneet Sahota, under the supervision of Dr. Bradley Stoner, will investigate the politics and ethics of medical genetics research (research on the genetic basis of disease) in an American Indian community that is developing an innovative partnership with a genetics research institute. Research on the genetic basis of disease is a contentious issue for American Indians. Some tribal leaders are concerned that genetics data might be used to undermine tribes' claims to being "native" to America, while others view medical/genetics research as a vital source of cures for diseases that disproportionately affect American Indians. Tribes are increasingly seeking control over research agendas, treatment of blood/tissue samples, and patents for drugs or diagnostic tests developed by researchers. The proposed project will examine an influential yet understudied aspect of biomedicine, medical/genetics research, and will explore how leaders and members of an American Indian tribe negotiate a collective stance towards new biotechnologies. The researcher will examine how the tribe relates to intellectual property law and federal models of research regulation through participant-observation in intra-tribal discussions about medical/genetics research and in negotiations between the tribe and the genetics research institute. Using semi-structured interviews with 60 tribal members and 15 tribal leaders, this project will also explore how tribal members' past experiences with medical/genetics research have affected their notions of biomedical concepts such as "genetic risk" for disease. In these interviews, data will also be collected about tribal members' expectations for future medical/genetics research projects, particularly related to traditional bioethical issues such as ownership of blood/tissue samples, financial compensation to research volunteers, and equitable access to health care.