Oral History of Human Genetics: The Intelligent Archive

人类遗传学的口述历史：智能档案

• 批准号: 6766632
• 负责人: Edward R B McCabe
• 金额: $ 14.43万
• 依托单位: UNIVERSITY OF CALIFORNIA LOS ANGELES
• 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 2007-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6766632
• 关键词: DVD /CD ROM; Internet; archives; clinical research; genetics; history of life science; human data; human subject; interview; technology /technique development; videotape /videodisc

DESCRIPTION: (provided by applicant) We propose to create a historical resource that will allow researchers now and in the future to gain new insights into the history of human genetics as it developed in the second half of the twentieth century. This resource will consist of: a core group of 100 online oral histories with clinicians, scientists, theorists, organizational leaders, and participants in ethical, legal, and social debates in the field of human genetics; a website that enriches these oral histories through annotation, cross-reference, and thematic contextual narratives and allows for flexible and user-friendly searching through a custom-designed coding scheme; and a set of focused videotaped interviews with the oral authors on DVDs that can be used in formal curricula and in educational exhibits. The resource will enable researchers at all levels of expertise and from all fields to readily locate the information of interest to them and point them toward new questions, new hypotheses, and new meanings of the materials. The investigators will also use the opportunity presented by the interviews to explore the availability of letters, research notes, and other unpublished documents that may be preserved online or in appropriate archives. Because human genetics is not a medical or scientific discipline alone, but also a subject of ethical, legal and social importance, it is critical that the field and its historians continually reexamine its conceptual frameworks and remain aware of the bases and implications of its theory and practice; such reexamination can proceed only if the field's history is preserved and studied. Through our examination of the history of human genetics we will: 1. investigate how the field and its scientific knowledge and practices were shaped by the formation of collegial networks and mentoring relationships; 2. describe how the history informs current ethical, legal, and social debates on such issues as on such questions as genetic privacy and reproductive freedom, the value of human differences, the governance and financing of medical research, and the meaning of self and identity in a genetically defined and manipulable species. 3. suggest new directions for research.

产品说明：（由申请人提供）我们建议创建一个历史资源，使现在和将来的研究人员能够获得对人类遗传学历史的新见解，因为它在二十世纪后半叶发展。这一资源将包括：100个在线口述历史的核心小组，有临床医生、科学家、理论家、组织领导人和人类遗传学领域伦理、法律的和社会辩论的参与者;一个网站，通过注释、交叉引用和主题上下文叙述丰富这些口述历史，并允许通过定制设计的编码方案进行灵活和用户友好的搜索;以及一套与口头作者的重点录像采访DVD，可用于正式课程和教育展览。该资源将使各个专业水平和各个领域的研究人员能够随时找到他们感兴趣的信息，并将其指向新问题，新假设和材料的新含义。调查人员还将利用访谈提供的机会，探索信件、研究笔记和其他未发表的文件的可用性，这些文件可能保存在网上或适当的档案中。 由于人类遗传学不仅是一门医学或科学学科，而且也是一门具有伦理、法律的和社会重要性的学科，因此该领域及其历史学家必须不断重新审视其概念框架，并始终意识到其理论和实践的基础和含义;只有在该领域的历史得到保存和研究的情况下，这种重新审视才能进行。通过对人类遗传学历史的研究，我们将： 1. 调查该领域及其科学知识和实践是如何通过学院网络和指导关系的形成而形成的; 2. 描述历史如何通知当前的伦理，法律的，和社会辩论等问题，如遗传隐私和生殖自由，人类差异的价值，管理和资助的医学研究，自我和身份的意义，在一个基因定义和操纵的物种。 3. 为研究提供了新的方向。