Genetic hauntings: Mediating pre-patienthood and haunted health on TV
DOI:
https://doi.org/10.7146/mk.v39i74.133908Keywords:
Genetic testing, health hauntology, pre-patienthood, pre-patient illness narrativesAbstract
Through the development of a “health hauntological” approach, this article investigates how pre-patient illness narratives are mediated and negotiated in and around the DR documentary series Gentesten ændrede mit liv (2020) [The gene test changed my life]. We argue that this documentary format attests to how the expansion of genetic testing technologies alters experiences, genres, and narratives of illness that increasingly move to a pre-diagnostic and pre-symptomatic domain. The analysis shows how the use of genetic testing technologies creates hauntological situations in which pre-patients – through the mapping of family pathologies of the past and possible future diagnoses – encounter the complex temporalities and entanglements inherent to genetic bonds. Furthermore, we claim that these haunting encounters with mortality, vulnerability, and potential loss can be acted on – or listened to – in various responsive ways. Mediating pre-patient illness narratives thus entails an ethical balancing between care for participants and the desire for tellable, transformational narratives.
References
Abraham, N., & Torok, M. (1994). The shell and the kernel: Renewals of psychoanalysis. The University of Chicago Press.
Andrejevic, M. (2019). Automated media. Routledge. https://doi.org/10.4324/9780429242595
Blackman, L. (2008). The body. Berg.
Blackman, L. (2012). Immaterial bodies: Affect, embodiment, mediation. Sage. https://doi.org/10.4135/9781446288153
Bondebjerg, I. (2006). Dokumentarisme og fakta. In S. Hjarvard (Ed.), Dansk tv’s historie. Samfundslitteratur.
Bull, S. (2019). Television and the genetic imaginary. Palgrave Macmillan.
Charon, R. (2006). Narrative medicine: Honoring the stories of illness. Oxford University Press.
Cho, G. M. (2008). Haunting the Korean diaspora: Shame, secrecy, and the forgotten war. Minnesota University Press
Greco, M. (2019). On illness and value: Biopolitics, psychosomatics, participating bodies. Med Humanit, 45(2), 107–115. https://doi.org/10.1136/medhum-2018-011588
Dalgas, J. (2017, September 18). Læger advarer: Flere og flere danskere køber ”ubrugelige” test over nettet. Berlingske. https://www.berlingske.dk/samfund/laeger-advarer-flere-og-flere-danskere-koeber-ubrugelige-test-over-nettet
Davis, C. (2005). État présent: Hauntology, spectres and phantoms. French Studies, LIX(3), 373–379. https://doi.org/10.1093/fs/kni143
Derrida, J. (1994). Specters of Marx. Routledge.
Felzmann, H. (2015). ‘Just a bit of fun’: How recreational is direct-to-customer genetic testing? The New Bioethics, 21(1), 20–32. https://doi.org/10.1179/2050287715Z.00000000062
Fisher, M. (2014). Ghosts of my life: Writings on depression, hauntology and lost futures. zero books.
Frank, A. W. (1995). The wounded storyteller. Chicago University Press. https://doi.org/10.7208/chicago/9780226260037.001.0001
Franklin, S. (2000). Life itself: Global nature and the genetic imaginary. In S. Franklin, C. Lury, & J. Stacey (Eds.), Global nature, global culture (pp. 188–227). Sage. https://doi.org/10.4135/9781446219768
Gerdes, A. M. A., Jelsig, A. M., Schönewolf-Greulich, B., Østergaard, E., Brøndum-Nielsen, K., Wadt, K., Risom, L., & Lindquist, S. G. (2020, December 6). Kronik: DR-udsendelse om gentest medvirker til misinformation af befolkningen. Berlingske. https://www.berlingske.dk/kronikker/laeger-dr-udsendelse-om-gentest-medvirker-til-misinformation-af
Gordon, A. F. (2008). Ghostly matters: Haunting and the sociological imagination. Minnesota University Press
Green, S., Vogt, H., & Brodersen, J. (2020). De raske patienter i personlig medicin: Sygdomsforebyggelse og overdiagnosticering. In S. H. Klausen, & K. Christiansen (Eds.), Personlig medicin – filosofiske og tværvidenskabelige perspektiver (pp. 181–212). Munksgaard.
Hall, S. (2003). Representation: Cultural representations and signifying practices. Sage.
Hall, S. (2006). Encoding/decoding. In P. Marris, & S. Thornham (Eds.), Media studies: A reader (2nd ed.) (pp. 51–61). New York University Press.
Harris, A., Kelly, S. E., & Wyatt, S. (2014). Autobiologies on YouTube: Narratives of direct-to-consumer genetic testing. New Genetics and Society, 33(1), 60–78. https://doi.org/10.1080/14636778.2014.884456
Hawkins, A. H. (1999). Reconstructing illness: Studies in pathography. Purdue University Press.
Jerslev, A. (2014). Reality-tv. Samfundslitteratur.
Jurecic, A. (2012). Illness as narrative. University of Pittsburgh Press. https://doi.org/10.2307/j.ctt5hjr8p
Keller, E. F. (2000). The century of the gene. Harvard University Press
Lagerkvist, A. (2017). Existential media: Toward a theorization of digital thrownness. New Media & Society, 19(1), 96–110. https://doi.org/10.1177/1461444816649921
McCormack, D. (2021). The haunting temporalities of transplantation. Body & Society, 27(2), 58–82. https://doi.org/10.1177/1357034X21998729
Rose, N. (2007). The politics of life itself. Princeton University Press.
Schildrick, M. (2021). Hauntological dimensions of heart transplantation: The onto-epistemologies of deceased donation. Med Humanit, 47, 388–396. https://doi.org/10.1136/medhum-2020-011982
Shuman, A. (2005). Other people’s stories. University of Illinois Press.
Timmermans, S., & Buchbinder, M. (2010). Patients-in-waiting: Living between sickness and health in the genomics era. Journal of Health and Social Behavior, 51(4), 408–423. https://doi.org/10.1177/0022146510386794
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