Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics

项目概要/摘要。该申请提议继续建立一个研究中心 哥伦比亚精神病学、神经病学和行为学（PNB）遗传学的伦理、法律的和社会影响 大学医学中心（University Medical Center，CMEC），与黑斯廷斯中心合作。我们从那时起就得到了资助， 2010年4月，最初获得发展中心奖，自2013年起成为ELSI的完整卓越中心 研究（CEER）。这项提案建立在我们过去7年半建立的基础上， 制定一套经验性和概念性/规范性研究活动和教育经验， 包括重点确定PNB遗传学中新出现的ELSI问题，翻译和传播我们的 调查结果和关键利益攸关方的参与。我们的工作是基于特定的道德，法律的和社会 PNB遗传学提出的挑战，来自其对个人身份的影响，包括对 正常性和病理性;对与健康和生殖有关的行为的责任感，以及道德 选择;以及关于未来的模糊性，考虑到遗传和非遗传影响的复杂性， 许多PNB疾病。尽管这些特征并不是PNB遗传学所独有的，但它们往往尤其如此。 在精神病学、神经病学和行为学研究中很突出。我们中心将继续推动周到 审议在PNB遗传学背景下出现的一系列问题，并制定创新方法 来解决这些问题。具体而言，我们将开展一项重点研究计划，探索 对个体和家庭进行自闭症基因组检测-作为其他PNB疾病的潜在模型- 考虑到它对身份的影响，感知的责任，以及对生活轨迹模糊的反应， 沿着系统地考虑我们研究结果的更广泛的概念和规范含义。到 为了最大限度地发挥我们研究的价值，我们将建立健全的机制，将经验和规范转化为现实， 我们的研究成果，为政策和实践提出建议，利用其他人的参与， 专家和主要利益攸关方团体。与此同时，我们将采取系统的方法， PNB遗传学ELSI中出现的问题，提醒ELSI研究人员注意这些问题，并选择一个 问题的子集进行更深入的探索。着眼于ELSI研究的未来，我们将开发一个 从本科生到教职员工，在ELSI管道的关键点沿着的一系列职业经验。在 总之，我们将建立一个结构，以我们现有的优势和成就为基础， 跨学科合作，促进创新研究的开展，促进智力增长 在教员和学员中都是如此。

Project Summary/Abstract. This application proposes the continuation of a Center for Research on the Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral (PNB) Genetics at Columbia University Medical Center (CUMC), in collaboration with The Hastings Center. We have been funded since April 2010, initially under a developing center award and since 2013 as a full Center of Excellence in ELSI Research (CEER). This proposal builds on the foundation that we have created over the last 7-1/2 years, elaborating a set of empirical and conceptual/normative research activities and educational experiences that include a focus on identification of emerging ELSI issues in PNB genetics, translation and dissemination of our findings, and engagement of key stakeholders. Our work is based on the particular ethical, legal and social challenges presented by PNB genetics arising from its implications for: personal identity, including views of normality and pathology; perceived responsibility for behaviors related to health and reproduction, and moral choices; and ambiguity regarding the future, given the complexity of genetic and nongenetic influences on many PNB disorders. Although these characteristics are not unique to PNB genetics, they tend to be especially salient in psychiatry, neurology, and the study of behavior. Our Center will continue to promote thoughtful consideration of the range of issues arising in the context of PNB genetics and develop innovative approaches to addressing them. Specifically, we will undertake a focused program of research that explores the impact of genomic testing in autism on individuals and families—as a potential model for other PNB disorders— considering its effects on identity, perceived responsibilities, and responses to ambiguity in life-trajectories, along with systematic consideration of the broader conceptual and normative implications of our findings. To maximize the value of our research, we will create robust mechanisms to translate the empirical and normative output of our research into recommendations for policy and practice, capitalizing on the involvement of other experts and key stakeholder groups. At the same time, we will implement a systematic approach to identifying emerging issues in the ELSI of PNB genetics, alerting ELSI researchers to these issues, and selecting a subset of issues for more intensive exploration. With an eye on the future of ELSI studies, we will develop a range of career experiences at key points along the ELSI pipeline, from undergraduates to faculty members. In sum, we will create a structure that builds on our existing strengths and accomplishments to enhance transdisciplinary collaboration, facilitate the conduct of innovative research, and foster intellectual growth among both faculty and trainees.