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: 7098881
• 负责人: Edward R B McCabe
• 金额: $ 13.52万
• 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 2011-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7098881
• 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also use the opportunity presented by the interviews to explore the availability of letters, research notes, and other unpublished documents that may be preserved online or in appropriate archives.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.

描述：(申请人提供)我们建议创建一个历史资源，使现在和未来的研究人员能够对二十世纪下半叶发展的人类遗传学历史有新的见解。这一资源将包括：一个由100名临床医生、科学家、理论家、组织领导人和人类遗传学领域伦理、法律和社会辩论参与者组成的核心在线口述历史小组；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，并通过定制的编码方案允许灵活和用户友好的搜索；以及一组关于DVD口头作者的重点录像采访，可用于正式课程和教育展览。该资源将使所有专业水平和所有领域的研究人员能够容易地找到他们感兴趣的信息，并将他们指向材料的新问题、新假设和新含义。调查人员还将利用面谈提供的机会，探索是否可以获得信件、研究笔记和其他未公布的文件，这些文件可以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，并保持对其理论和实践的基础和影响的认识；只有在保存和研究该领域的历史的情况下，这种重新审视才能继续进行。通过我们对人类遗传学历史的考察，我们将： 1.调查该领域及其科学知识和实践是如何通过形成大学网络和指导关系而形成的； 2.描述历史如何影响当前关于遗传隐私和生殖自由、人类差异的价值、医学研究的治理和资助以及自我和身份在基因定义和可操纵物种中的意义等问题的伦理、法律和社会辩论。 3.为研究提出新的方向。