University of Michigan Training Program in ELSI Research

摘要 遗传学和基因组学研究正在迅速产生科学发现、技术进步和 临床应用，每一项都对医学和公共卫生有重要影响。为了实现……的承诺 然而，要实现的“基因组学革命”将带来许多伦理、法律和社会影响(ELSI) 需要积极主动地解决。自1990年以来，国家人类基因组研究所(NHGRI) 资助了ELSI研究计划，重点关注基因组研究中的伦理困境等领域， 将基因检测整合到医疗保健环境中，以及法律、法规和公共政策挑战。这个 ELSI计划最近被纳入更广泛的NIH机构培训补助金计划(T32)，标志着 认识到需要培训下一代ELSI研究人员，以应对日益增长的挑战和 基因组学研究的进步带来的机遇。 密歇根大学(UM)ELSI研究培训计划将通过提供 为博士后和博士后学者提供跨学科的综合指导。我们建议支持两个 每年两名博士后和两名博士后研究员。每个研究员都将参加一个为期两年的个人化 将在以下领域提供指导、知识和技能的培训课程：1) 基因组科学和医学；2)生命伦理学的核心原则和框架；3)定量和定性 研究方法；4)赠款撰写和手稿准备；5)实施跨学科 ELSI研究项目。培训计划将设在密歇根大学公共卫生学院，即将结束 与密歇根大学医学院的单位合作，包括#年生物伦理和社会科学中心 医学和人类遗传学系。培训计划将有一个由18名教员组成的团队 导师在ELSI研究和/或临床遗传学方面具有丰富的经验，并在NIH- 资助项目和研究指导；这些指导人员拥有相关学科的专业知识，包括 生命伦理学、临床心理学、遗传咨询、遗传健康/风险沟通、健康教育、健康 法律、卫生服务研究、医疗决策、医学遗传学、医学社会学、肿瘤学、 儿科学、公共政策、科学/技术研究和统计遗传学。拟议的培训计划 还将利用密歇根大学的大量资源，包括职业发展 密歇根临床与健康研究所的项目，研究方法培训机会 社会研究所，以及来自拉克姆研究生院的机构支持。

ABSTRACT Genetics and genomics research are rapidly generating scientific discoveries, technological advances, and clinical applications, each with important implications for medicine and public health. In order for the promise of the “genomics revolution” to be achieved, however, numerous ethical, legal and social implications (ELSI) will need to be proactively addressed. Since 1990, the National Human Genome Research Institute (NHGRI) has funded an ELSI Research Program focused on areas including ethical dilemmas in genomics research, integration of genetic testing in healthcare settings, and legal, regulatory and public policy challenges. The ELSI Program's recent inclusion in the broader NIH Institutional Training Grants Program (T32) signals a recognition of the need to train the next generation of ELSI researchers to face the growing challenges and opportunities posed by advances in genomics research. The University of Michigan (UM) Training Program in ELSI Research will help meet this need by providing integrated, interdisciplinary instruction for predoctoral and postdoctoral scholars. We propose to support two predoctoral and two postdoctoral fellows per year. Each fellow will participate in an individualized, 2-year course of training that will provide mentoring, knowledge and skills in areas including 1) the current state of genomic science and medicine; 2) core principles and frameworks in bioethics; 3) quantitative and qualitative research methods; 4) grant writing and manuscript preparation; and 5) the implementation of interdisciplinary ELSI research projects. The training program will be based in the UM School of Public Health, in close collaboration with units in the UM Medical School including the Center for Bioethics & Social Sciences in Medicine, and the Department of Human Genetics. The training program will feature a team of 18 faculty mentors with vast experience in ELSI research and/or clinical genetics and a proven track record of NIH- funded projects and research mentoring; these mentors possess expertise across relevant disciplines including bioethics, clinical psychology, genetic counseling, genetic health / risk communication, health education, health law, health services research, medical decision-making, medical genetics, medical sociology, oncology, pediatrics, public policy, science / technology studies, and statistical genetics. The proposed training program will also draw upon the considerable resources of the University of Michigan, including the career development programs of the Michigan Institute for Clinical & Health Research, research methods training opportunities at the Institute for Social Research, and institutional support from the Rackham Graduate School.