Center for Genetic Research Ethics and Law

基因研究伦理与法律中心

• 批准号: 7848442
• 负责人: PATRICIA A. MARSHALL
• 金额: $ 72万
• 依托单位: CASE WESTERN RESERVE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2004
• 资助国家: 美国
• 起止时间: 2004-09-01 至 2014-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7848442
• 关键词: Center; Genetic; Research; Ethics; Law

DESCRIPTION (provided by applicant): In its first five years, the CWRU Center for Genetic Research Ethics and Law (CGREAL) explored a range of ethical, legal, and policy issues in the design and conduct of genomic gene-discovery research. We now propose to follow the trajectory of genomics into its "translational" phase, where its expanded research needs and higher clinical aspirations are creating new ethical, legal, and policy challenges. Translational research is often simplified as a linear conversion of scientific discoveries into clinical applications, "from bench to bedside." In reality, it is complicated by interactions among a wide range of stakeholders. As translational genomic research moves increasingly into the "public square" of clinical, commercial, community, and public health settings in its search for data sources and practical applications, it must negotiate the competing interests and values of those settings in order to achieve its scientific goals. CGREAL's 5-year goal is to provide evidence and arguments that can help all parties in that negotiation work toward a just and responsible outcome. In its new incarnation, CGREAL will consist of three programs designed to help develop the policies and practices that should guide that process. Our Transdisciplinary Research Program will study translational genomic research by mapping and comparing stakeholder views on four value-sensitive features: driving hypotheses; instrumental strategies; social constraints; aspirational goals. Wherever divergent interests force decisions about these features, translational genomic research will encounter ethical, legal, and social challenges, triggering our normative and conceptual analyses of the arguments involved. Our Translation to Policy Program will develop our analyses into policy proposals for addressing the challenges our own research uncovers. In addition, we will monitor the field at large to steer our research agenda towards other emergent policy problems. This program will identify and communicate policy options at institutional, professional, regulatory, or legislative levels, in collaboration with other biomedical research policy development programs. Our Training Program will continue to expand its scope to bring a wider range of voices to ELSI research and policy development. PUBLIC HEALTH RELEVANCE: The translation of genomic research into health benefits for the public is a goal that is shared by many scientists, patients, public health agencies, and private enterprises. All these interested parties will need to work together to analyze large collections of DNA and clinical information. Our Center's goal is to help that process by providing the information that will be required to meet the ethical, legal, and social challenges.

描述（由申请人提供）：在其头五年中，CWRU遗传研究伦理与法律中心（CGREAL）探讨了基因组基因分解研究的设计和行为中的一系列道德，法律和政策问题。现在，我们建议将基因组学的轨迹纳入其“转化”阶段，在此阶段，其扩展的研究需求和更高的临床愿望正在构成新的道德，法律和政策挑战。翻译研究通常被简化为将科学发现的线性转化为临床应用，“从长凳到床边”。实际上，由于广泛的利益相关者之间的互动使它变得复杂。随着转化基因组研究越来越多地进入临床，商业，社区和公共卫生环境的“公共广场”，以寻求数据源和实际应用，它必须协商这些环境的竞争利益和价值观，以实现其科学目标。 Cgreal的5年目标是提供证据和论点，可以帮助所有方面的谈判方面的所有方向公正和负责任的结果。在新的化身中，Cgreal将由三个计划组成，旨在帮助制定应指导该过程的政策和实践。我们的跨学科研究计划将通过映射和比较利益相关者对四个价值敏感特征的观点来研究转化基因组研究：驱动假设；工具策略；社会约束；抱负目标。无论何时何处，无论在何处迫使这些特征的决策，转化基因组研究都会遇到道德，法律和社会挑战，从而触发我们对所涉及的论点的规范和概念分析。我们对政策计划的转化将将我们的分析发展为政策提案，以应对我们自己的研究发现的挑战。此外，我们将总体监视该领域，以将研究议程转向其他紧急政策问题。该计划将与其他生物医学研究政策制定计划合作，在机构，专业，监管或立法层面上确定和传达政策选择。我们的培训计划将继续扩大其范围，为ELSI研究和政策制定带来更广泛的声音。 公共卫生相关性：将基因组研究转化为公众的健康益处，这是许多科学家，患者，公共卫生机构和私人企业的目标。所有这些有关方面都需要共同分析大量DNA和临床信息。我们中心的目标是通过提供应对道德，法律和社会挑战所需的信息来帮助这一过程。