Center for Genetic Research, Ethics, and Law

描述(由申请人提供)：拟议的遗传学研究伦理与法律中心(CGREL)的使命是促进对与个人、家庭、社区和人群一起设计和实施人类遗传学研究所涉及的伦理、法律和社会问题进行持续的跨学科研究。CWRU已经主持了与CGREL主题相关的各种研究工作。CGREL将整合这些努力，启动新的研究合作，并提供必要的资源结构，以便将其应用于高度优先的遗传学研究政策问题。 CGREL的基本架构由六个相互重叠的研究小组、六个研究资源核心和一个研究培训方案组成。CGREL产生的研究合作将被用于实现中心范围内的四个研究目标，我们认为这些目标反映了遗传研究伦理和政策制定方面的最优先需求： 1.为了加深我们对人类遗传学研究与人类之间关系的理解，我们试图通过阐明影响不同人对遗传学研究参与的反应和体验的文化价值观和信仰来使其受益。 2.通过阐明从商业前景到利益分享协议等翻译激励因素对基础遗传学研究的设计和实施的影响，加深我们对人类遗传学研究与其所承诺的人类利益之间的关系的理解。 3.通过当代研究法规和规范的透镜，通过分析人类变异研究、计算基因组学、测序技术和基因转移技术的融合，预测遗传学研究的新进展带来的研究伦理和科学政策问题。 4.通过提供以证据为基础的政策选择，供科学界、机构审查委员会和国家研究监管机构使用，以期在人类基因研究的设计和开展中改进对参与者的保护，从而利用正在进行的遗传学研究伦理方面的现有学术成果进行实际应用。

DESCRIPTION (provided by applicant): The mission of the proposed Center for Genetics Research Ethics and Law (CGREL) is to foster sustained interdisciplinary research on the ethical, legal, and social issues involved in the design and conduct of human genetics research with individuals, families, communities, and populations. CWRU already hosts a variety of research efforts relevant to the CGREL's theme. The CGREL will integrate these efforts to launch new research collaborations and provide the resource structure necessary for their application to high priority genetics research policy questions. The basic architecture of the CGREL consists of six overlapping research groups, six research resource cores, and a research training program. The research collaborations generated by the CGREL will be harnessed to pursue four Center-Wide research aims, which we believe reflect the highest priority needs in genetic research ethics and policymaking: 1. To improve our understanding of the relationship between human genetics research and the humans it seeks to benefit by elucidating the cultural values and beliefs that influence different people's reactions to and experience of genetics research participation. 2. To improve our understanding of the relationship between human genetics research and the human benefits it promises by elucidating the influence of translational incentives, ranging from commercial prospects to benefit-sharing agreements, on the design and conduct of basic genetics research. 3. To anticipate the research ethics and science policy issues raised by new advances in genetics research by analyzing the confluence of human variation research, computational genomics, sequencing technologies, and gene transfer techniques through the lenses of contemporary research regulations and norms. 4. To harness ongoing scholarship on genetics research ethics for practical application by providing evidence-based policy options for use by the scientific community, institutional review boards, and national research regulatory bodies in seeking to improve participant protections in the design and conduct of human genetic research.