Genomics and Native Communities: Perspectives, Ethics, and Engagement

 应聘者简介：应聘者纳尼巴·加里森博士是范德比尔特大学生物医学伦理与社会中心的助理教授，初级职位为儿科，二级职位为人类学。她在斯坦福大学完成了遗传学博士学位，并在NIH F32博士后奖学金的支持下，在斯坦福生物医学伦理中心(SCBE)的遗传学与伦理学研究整合中心(CIRGE)获得了博士后奖学金。在这个职业发展奖的五年里，她计划获得遗传学研究的伦理、社会和文化影响方面的专家级知识， 特别关注与美国印第安人利益相关者的社区参与研究。她的长期目标是进行一个独立的研究项目，使她成为一名值得信赖的中间人，了解科学、研究伦理和文化关切，包括将少数群体纳入遗传学研究，包括关于生物库和临床试验的问题。她寻求追求学术生涯，将学术界与社区参与的研究联系起来，成为与部落和少数族裔社区合作的领导人，以确保对研究的道德参与。她提出了强有力的指导和相关的职业发展计划，使她能够成功地通过R01赠款机制竞争独立资金。环境加里森博士组建了一个指导团队，可以为她提供互补的专业领域。Ellen Wright Clayton，医学博士，JD，Craig-Weaver教授，儿科学教授和法学教授，Vanderbilt大学生物医学伦理和社会中心的联合创始人是她的主要导师，并就基因组学中的伦理和政策问题提供指导。Wylie Burke博士，华盛顿大学生物伦理学和人文科学教授，将就基因组学中的伦理和文化问题提供指导，并将为社区参与研究提供指导。范德比尔特大学医学院(生物统计学、英格拉姆癌症中心、精神病学)和护理学院的统计和测量教授玛丽·S·迪特里希博士将在进行调查研究和统计分析方面提供指导。在导师、生物医学伦理和社会中心的热情支持和机构的支持下，加里森博士已做好充分准备，完成这项提案中的培训和研究，并发展成为一名成功的学术研究人员。研究这项建议旨在描述美国印第安人/阿拉斯加原住民/夏威夷原住民(AI/AN/NH)利益相关者，包括部落首领、科学家、临床医生和政策制定者对基因研究的看法和意见，以便为部落从事符合伦理道德的基因研究制定指导方针、战略和政策。目标1将通过半结构化访谈将定性数据与通过调查获得的定量数据结合在一起，为部落首领和咨询委员会提供基础，以指导和制定将重新制定关于遗传学和基因组学辩论的政策。Aim 2将召集一组利益相关者，利用德尔菲法，讨论需要为政策制定提供额外指导的优先领域。所获得的结果将指导制定政策和制定指导方针，以便进行和实施在伦理和文化上可接受的基因组研究，供部落考虑采用。

 DESCRIPTION (provided by applicant): Candidate Dr. Nanibaa' Garrison is an Assistant Professor at Vanderbilt University on the tenure-track in the Center for Biomedical Ethics and Society with a primary appointment in the Department of Pediatrics and a secondary appointment in Anthropology. She completed a Ph.D. in genetics at Stanford University and postdoctoral fellowship at the Center for Integration of Research on Genetics & Ethics (CIRGE) within the Stanford Center for Biomedical Ethics (SCBE) with the support of an NIH F32 postdoctoral fellowship. During the five years of this career development award, she plans to gain expert level knowledge in the ethical, social, and cultural implications of genetics research, with a particular focus on community engaged research with American Indian stakeholders. Her long-term goal is to conduct an independent research program where she becomes a trusted intermediary who understands science, research ethics, and cultural concerns involving the inclusion of minority populations in genetics research, including issues on biobanking and clinical trials. She seeks to pursue an academic career, bridging academia with community-engaged research, to emerge as a leader working with tribes and minority communities to ensure ethical engagement with research. She proposes strong mentorship and a relevant career development plan that will enable her to successfully compete for independent funding through R01 grant mechanisms. Environment Dr. Garrison has assembled a mentorship team who can provide her with complementary areas of expertise. Ellen Wright Clayton, MD, JD, Professor of Craig-Weaver Professor of Pediatrics and Professor of Law, and co-Founder of the Center for Biomedical Ethics and Society at Vanderbilt University is her primary mentor and provide guidance on the ethical and policy issues in genomics. Wylie Burke, MD, PhD, Professor of Bioethics and Humanities at the University of Washington, will provide mentorship on the ethical and cultural issues in genomics and will provide guidance for engaging communities in research. Mary S. Dietrich, PhD, Professor of Statistics and Measurement in the Schools of Medicine (Biostatistics, Ingram Cancer Center, Psychiatry) and Nursing at Vanderbilt University will provide mentorship on conducting survey research and statistical analyses. With the enthusiastic support of her mentors, Center for Biomedical Ethics and Society, and institutional support, Dr. Garrison is well prepared to complete the training and studies in this proposal and develop into a successful academic investigator. Research This proposal aims to characterize the views and opinions of American Indian/Alaska Native/Native Hawaiian (AI/AN/NH) stakeholders, including tribal leaders, scientists, clinicians, and policy makers, on genetic research in order to develop guidelines, strategies, and policies for tribes to engage in ethically sound genetic research. Aim 1 will incorporate qualitative data through semi-structured interviews coupled with quantitative data obtained through surveys to provide a basis for tribal leaders and an Advisory Board to guide and shape policies that will reframe the debate about genetics and genomics. Aim 2 will bring a group of stakeholders together to deliberate, using the Delphi process, about priority areas requiring additional guidance for policy making. The results obtained will guide policy-making and the creation of guidelines for the ethically and culturally acceptable conduct and implementation of genomics research for tribes to consider for adoption.