UPDATED: Tracking personal data for use in medical research: sharing and ownership

Outputs from Tracking biodata: sharing and ownership

Dr Aristea Fotopoulou from the University of Sussex undertook a research placement at the Science & Justice Research Center, University of California, Santa Cruz, as 2014 visiting scholar, funded by NEMODE

The project examined social and policy implications of emerging models of sharing and ownership, in relation to the use of personal data & biodata for medical research and other purposes. It focused on a) user practices and b) online service provision models  of personal data analytics and self-tracking. It involved interviews and participant observation with specific Silicon Valley internet start-ups & Quantified Self actors in the San Francisco area. 

The placement has now finished and has provided the following outputs:

‘All these emotions, all these yearnings, all these data’, a presentation on platform openness, data sharing and visions democracy. Slides available here: AFotopoulou NEMODE slides 01

‘Climbing Gotzilla with Fitbit: Apps, sensors and all these data’ presentation slides available here: AFotopoulou NEMODE slides 02

An article on The Quantified Self community, lifelogging and the making of “smart” publics:

The Final Report from the placement is available here: AFotopoulou_Nemode End of Placement052014

You can find out more about Dr Fotopoulou’s work at her Tracking biodata: sharing and ownership blog , her personal research blog and her Twitter feed.