Narrativization – Genetics, Media, and Medicine
After the successful sequencing of the human genome in the years 2003-2004, the acceptance of using genomic information as a basis for medical therapy has rapidly increased. The success of genetic tests suppliers underscores the growing interest of people in developed countries for their genomic make-up. Although most genomic mutations have no clear predictable effects and the interactions of genetic and epigenetic factors are highly complex, the media describe genetic information as a set of evidence-based facts (e.g. ‘gene for X’, where X is some phenotypic or behavioral trait). Moreover, the media regularly emphasize the discoveries of bold researchers and the stories of successfully cured patients. The socioepistemic constellations defined and investigated in these two subprojects involve patients, medical experts and genetic researchers that act within the setting of their scientific discipline, their medical institution as well as the public sphere and social media.
As a starting point, both subprojects assume that, as scientific results are communicated to a wide audience through mass media or to laypersons in the context of participatory and personalized medicine (especially if they themselves participated in the scientific process), evidence cannot solely be produced and communicated in accordance with highly specialized and abstract procedures. Narratives are one central communication mode in both the mass media and our everyday lives: they show how narrative evidence can be generated out of plausible stories of human experiences and emotions.
The first subproject focuses on participatory efforts in medicine and investigates changing evidence practices in the field of personalized medicine. A gamut of patient-generated data as well as narratives about sickness are analyzed both historically and hermeneutically. The second subproject quantitatively analyzes the use of narrative evidence practices in the media coverage of genomic research, its features, and the relation of these features to common scientific evidence practices. The vast amount of media coverage could also be linked to the strong interest of the population in the advances in human genetics and molecular medicine that made 21st century personalized medicine possible. This holds true for both (currently) healthy and sick people. A joint workshop concerning the various forms of narrative evidence generation and systematic registration will encourage an intensive methodological exchange between the two subprojects.