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also use the opportunity presented by the interviews to explore the availability of letters, research notes, and other unpublished documents that may be preserved online or in appropriate archives.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.
| Comfort, Nathaniel (2009) The prisoner as model organism: malaria research at Stateville Penitentiary. Stud Hist Philos Biol Biomed Sci 40:190-203 |
