Genomics and Native Communities: Perspectives, Ethics, and Engagement

 描述（由申请人提供）：候选人Nanibaa' Garrison博士是范德比尔特大学生物医学伦理与社会中心的终身制助理教授，主要任职于儿科，次要任职于人类学。她完成了博士学位。在斯坦福大学的遗传学和博士后研究中心整合研究遗传学和伦理学（CIRGE）在斯坦福大学生物医学伦理中心（SCBE）的支持下，美国国立卫生研究院F32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， 特别注重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项独立的研究计划，在那里她成为一个值得信赖的中介人，了解科学，研究伦理和文化问题，涉及将少数群体纳入遗传学研究，包括生物库和临床试验问题。她寻求追求学术生涯，弥合学术界与社区参与的研究，成为一个领导者与部落和少数民族社区合作，以确保与研究的道德参与。她提出了强有力的指导和相关的职业发展计划，这将使她能够成功地通过R 01赠款机制竞争独立的资金。加里森博士组建了一个导师团队，可以为她提供互补的专业领域。Ellen Wright克莱顿，医学博士，法学博士，Craig-Weaver儿科教授和法学教授，范德比尔特大学生物医学伦理与社会中心的联合创始人是她的主要导师，并在基因组学的伦理和政策问题上提供指导。Wylie Burke，医学博士，华盛顿大学生物伦理学和人文学教授，将提供基因组学伦理和文化问题的指导，并将为社区参与研究提供指导。玛丽S. Dietrich博士是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）和护理学院的统计学和测量学教授，他将为开展调查研究和统计分析提供指导。在她的导师，生物医学伦理与社会中心和机构支持的热情支持下，加里森博士已经准备好完成本提案的培训和研究，并发展成为一名成功的学术研究者。该提案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（包括部落领袖，科学家，临床医生和政策制定者）对遗传研究的观点和意见，以制定指导方针，战略和政策，让部落参与道德健全的遗传研究。目标1将纳入通过半结构化访谈获得的定性数据以及通过调查获得的定量数据，为部落领袖和咨询委员会提供依据，以指导和制定政策，重新界定关于遗传学和基因组学的辩论。目标2将召集一批利益有关者，利用德尔菲程序，讨论需要为决策提供额外指导的优先领域。所获得的结果将指导决策和制定准则，以道德和文化上可接受的方式开展和实施基因组学研究，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.