Center for Integrating Ethics & Genetic Research

描述（由申请人提供）：现代基因研究赋予我们前所未有的理解和操纵基本生物过程的能力。我们在基因方面理解和塑造世界的潜力日益增长，这也严重挑战了基本信仰和道德规范。同时，价值观和规范也影响着基因研究的设计和实施方式。尽管新兴的基因研究具有重大的伦理和社会意义，但遗传学家参与跨学科研究和讨论这些问题的场所很少。该提案的总体目标是创建一个伦理与基因研究整合中心（CIEGR），以开发和测试审议、互动过程的新模式，将伦理、法律和社会因素整合到当前和新兴基因研究的设计和实施中。CIEGR将通过一系列创新项目和产品来实现这些目标：1)ELSI综合研究项目（PIER），该项目将确定并开展关于伦理、法律和社会问题的研究，重点研究遗传研究的两个领域（人类遗传变异和神经和行为遗传学），并开发教育材料和政策指导；2)为遗传学研究人员提供实时咨询，以预测和制定政策指导，解决当前或未来研究中可能出现的、其他机构机制无法解决的伦理、法律或社会问题；3)培训和教育计划，将培养4名遗传学和ELSI研究方面的博士后学者，并将PIER和BCP确定的伦理问题作为为遗传学和ELSI研究人员制作教材的基础。其中包括两部关于研究伦理的纪录片培训影片、问题简报、政策指导和一系列互动对话的网络广播。新模型将被广泛采用，并将使研究界和公众对遗传研究伦理问题进行前所未有的考虑。

DESCRIPTION (provided by applicant): Modern genetic research gives us unprecedented ability to understand and manipulate fundamental biological processes. Our growing potential to understand and shape the world in genetic terms also seriously challenges basic beliefs and ethical norms. At the same time, values and norms affect the way genetic research is designed and conducted. Despite the significant ethical and societal implications of emerging genetic research, there are few venues for geneticists to participate in interdisciplinary research and to discuss these issues. The overall goal of this proposal is to create a Center for Integrating Ethics and Genetic Research (CIEGR) to develop and test new models of deliberative, interactive processes that integrate ethical, legal and social considerations into the design and conduct of current and emerging genetic research. CIEGR will achieve these goals through a number of innovative programs and products: 1) The Program for Integrated ELSI Research (PIER), which will identify and conduct research on ethical, legal and social issues, focusing on two areas of genetic research (human genetic variation and neuro- and behavioral genetics), and develop educational materials and policy guidance; 2) a Benchside Consultation Program BCP) for genetic researchers seeking real-time consultation to anticipate and develop policy guidance to address ethical, legal or social issues that could arise from current or future research and that are not addressed by other institutional mechanisms; 3) a Training and Education Program that will train four postdoctoral scholars in both genetic and ELSI research, and use the ethical issues identified by PIER and BCP as the basis for producing educational materials for genetic and ELSI researchers. These will include two documentary training films on research ethics, issue briefs, policy guidance, and webcasts of a series of Interactive Dialogs. The new models will be widely adoptable and will enable unprecedented consideration of genetic research ethics issues among the research community and the public.