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

道德、法律研究中心

基本信息

批准号：
10207705
负责人：
Paul Stuart Appelbaum
金额：
$ 104.65万
依托单位：
COLUMBIA UNIVERSITY HEALTH SCIENCES
依托单位国家：
美国
项目类别：
财政年份：
2013
资助国家：
美国
起止时间：
2013-09-17 至 2023-06-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10207705
关键词：
Academic Medical Centers Activities of Daily Living Address Affect Award Behavior Behavior Disorders Behavioral Behavioral Genetics Bioethics Characteristics Clinical Collaborations Communities Development Diagnostic Elements Ensure Eye Faculty Family Fostering Foundations Funding Future Genetic Genetic Counseling Genetic Research Genetic Screening Genetic Translation Genomics Goals Growth Health Individual Investigation Joints Laws Life Mental disorders Mentors Modeling Monitor Morals Neonatal Screening Neurologic Neurology Normalcy Output Parents Pathology Personhood Persons Policies Psychiatry Recommendation Reproduction Research Research Activity Research Personnel Schizophrenia Scholarship Schools Scientist Spinal Muscular Atrophy Structure Students Sum Testing Time Training Translating Translations Uncertainty Update Work autism spectrum disorder base behavioral study career clinical application college design ethical legal social implication experience genetic information genetic variant genome sequencing innovation interdisciplinary collaboration member multidisciplinary nervous system disorder next generation non-genetic programs response undergraduate student

项目摘要

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.

项目摘要/摘要本申请建议继续建立一个研究中心。哥伦比亚大学精神病学、神经学和行为 (PNB) 遗传学的伦理、法律和社会影响大学医学中心（CUMC）与黑斯廷斯中心合作，我们自此获得了资助。 2010 年 4 月，最初获得开发中心奖，自 2013 年起成为 ELSI 的完整卓越中心研究 (CEER)。该提案建立在我们过去 7-1/2 年创建的基础之上，阐述一系列实证和概念/规范研究活动和教育经验，包括重点识别 PNB 遗传学中新出现的 ELSI 问题、翻译和传播我们的我们的工作基于特定的道德、法律和社会。 PNB 遗传学带来的挑战源于其对以下方面的影响：个人身份，包括观点正常性和病理性；对与健康和生殖以及道德相关的行为的感知责任鉴于遗传和非遗传影响的复杂性，选择；以及对未来的模糊性尽管这些特征并非 PNB 遗传学所独有，但它们往往尤其突出。我们的中心将继续促进深思熟虑。考虑 PNB 遗传学背景下出现的一系列问题并开发创新方法为了解决这些问题，我们将开展一项重点研究计划，探讨这些问题的影响。对个人和家庭进行自闭症基因组测试——作为其他 PNB 疾病的潜在模型—— 考虑到它对身份、感知责任以及对生活轨迹中模糊性的反应的影响，同时系统地考虑我们的研究结果的更广泛的概念和规范含义。最大化我们的研究价值，我们将创建强有力的机制来转化经验和规范利用其他人的参与，将我们的研究成果转化为政策和实践建议同时，我们将实施系统的方法来识别。 PNB 遗传学 ELSI 中出现的新问题，提醒 ELSI 研究人员注意这些问题，并选择着眼于 ELSI 研究的未来，我们将开发一个更深入探索的问题子集。 ELSI 管道中从本科生到教职员工的一系列职业经历。总而言之，我们将创建一个以我们现有优势和成就为基础的结构，以增强跨学科合作，促进创新研究的进行，促进智力发展在教师和实习生中。