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also use the opportunity presented by the interviews to explore the availability of letters, research notes, and other unpublished documents that may be preserved online or in appropriate archives.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：（由申请人提供）我们建议创建一种历史资源，该历史资源将使研究人员现在和将来能够在20世纪下半叶开发的人类遗传学史上获得新的见解。该资源将包括：由临床医生，科学家，理论家，组织领导者以及人类遗传学领域的道德，法律和社会辩论参与者组成的100个在线口述历史的核心小组；一个通过注释，交叉引用和主题上下文叙述丰富这些口述历史的网站，并通过自定义设计的编码方案进行灵活且用户友好的搜索；以及与DVD的口头作者进行的一系列专注的录像访谈，这些访谈可用于正式课程和教育展览中。该资源将使研究人员能够在各个级别的专业知识中，从各个领域都可以轻松地找到感兴趣的信息，并将他们指向新的问题，新的假设和材料的新含义。调查人员还将利用访谈提供的机会来探索可能保存在线或适当档案中的信件，研究笔记和其他未发表的文件的可用性。 由于人类遗传学并不是一门医学或科学学科，而是一个道德，法律和社会重要性的主题，因此该领域及其历史学家不断重新审查其概念框架并保持理论和实践的基础和含义至关重要。这种重新审查只有在保存和研究该领域的历史记录时才可以进行。通过检查人类遗传学史，我们将： 1。研究该领域及其科学知识和实践是如何通过大学网络的形成和指导关系来塑造的； 2.描述历史如何在诸如遗传隐私和生殖自由，人类差异的价值，医学研究的治理和融资以及在遗传定义和可操纵物种中的自我和身份的含义等问题上为当前的道德，法律和社会辩论提供有关当前的道德，法律和社会辩论。 3。建议新的研究方向。