New Meanings in the Archive: Privacy, Technological Change and the Status of Sources

This essay reflects on how technological changes in biomedicine can affect what archival sources are available for historical research. Historians and anthropologists have examined the ways in which old biomedical samples can be made to serve novel scientific purposes, such as when decades-old frozen tissue specimens are analyzed using new genomic techniques. Those uses are also affected by shifting ethical regimes, which affect who can do what with old samples, or whether anything can be done with them at all. Archival collections are subject to similar dynamics, as institutional change and shifts in ethical guidelines and privacy laws affect which sources can be accessed and which are closed. I witnessed just such a change during my research into human genetics using archives in the Wellcome Collection. A few years into my project, those archives had their privacy conditions reassessed, and I saw how some sources previously seen as neutral were now understood to contain personal sensitive information. This paper describes the conditions of this shift-including the effects of technological change, new ethical considerations, and changing laws around privacy. I reflect on how these affected my understanding of the history of human genetics, and how I and others might narrate it.