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Accepted Paper

Haunting data: Multitemporal (after)lives of leaked mental health data  
Marjo Kolehmainen (University of Turku)

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Paper short abstract

This presentation examines data breach victims’ experiences through a digital hauntology lens. The victims are bound to ‘data meantimes’ as their data may circulate online indefinitely, and waiting for new harms and crimes is key to their enduring suffering.

Paper long abstract

This presentation draws upon a study that examines the experiences of data breach victims through a lens provided by the digital hauntology framework. The private psychotherapy provider Vastaamo’s database was the target of a data breach, with the leak of both personal identification information and notes from therapy sessions. While the leak was in many ways a result of the datafication of health care, the platformisation of psychotherapy – the business model of Vastaamo relied on a digital platform – enabled this breach to occur on a massive scale. From the victims’ viewpoint, data generated in the past may continue to haunt the victims in future. I discuss and analyse the leaked data, in all their liveliness and with their own multitemporal (after)lives, as both haunted and haunting. The data consist of anonymous written stories by victims (N=100). The breach left victims more vulnerable to new harms and injuries, especially since their personal information having been made accessible on the dark web. Thus, the danger cannot be said to be over, and the victims are bound to ‘data meantimes’ as their data is potentially endlessly circulating, and waiting for new harms and crimes is key to their enduring suffering. The victims’ stories speak of the uncanny intimacies generated by displaced and misplaced data and the various modes of (in)attention in data-driven health care. Data assumed to be privatised and fossilised has been made widely available, holding open not only their multitemporal (after)lives but also the future horizons of the victims.

Traditional Open Panel P178
Caring for the possible: In the meantime of healthcare’s data-driven futures
  Session 1