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

项目摘要/摘要。这项申请建议继续设立一个研究中心 哥伦比亚大学精神病学、神经学和行为遗传学(PNB)的伦理、法律和社会影响 大学医学中心(CUMC)，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，最初是发展中中心奖，自2013年以来一直是ELSI的全面卓越中心 研究(CEER)。这项提议建立在我们在过去7年半的基础上建立的， 阐述一套经验性和概念性/规范性研究活动和教育经验 包括侧重于确定PNB遗传学中新出现ELSI问题、翻译和传播我们的 调查结果，以及关键利益攸关方的参与。我们的工作是基于特定的伦理、法律和社会 PNB遗传学对以下方面的影响带来的挑战：个人认同感，包括 正常和病理；对与健康和生殖有关的行为的感知责任，以及道德 选择；以及对未来的模棱两可，因为遗传和非遗传对 很多PNB障碍。虽然这些特征并不是PNB遗传学独有的，但它们往往是特别的 在精神病学、神经学和行为学研究方面表现突出。我们的中心将继续推动深思熟虑 审议在PNB遗传学方面出现的一系列问题，并制定创新办法 向他们致敬。具体地说，我们将开展一项重点研究计划，探索 对个人和家庭进行自闭症的基因组测试--作为其他PNB障碍的潜在模式-- 考虑到它对身份认同、被感知的责任以及对生活轨迹中模棱两可的反应的影响， 同时系统地考虑我们调查结果所涉的更广泛的概念和规范问题。至 最大限度地发挥我们研究的价值，我们将创建强有力的机制，将经验和规范转化为 我们对政策和实践建议的研究成果，利用其他人的参与 专家和关键利益攸关方群体。同时，我们将实施一种系统的方法来确定 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，以进行更深入的探索。着眼于ELSI研究的未来，我们将开发一种 在ELSI管道沿线关键位置的一系列职业经历，从本科生到教职员工。在……里面 总之，我们将建立一个建立在我们现有优势和成就基础上的结构，以增强 跨学科协作，促进创新研究的开展，促进智力增长 在教职员工和实习生中。

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.