Much of personal data is fundamentally social in nature – it is not tied to one individual, but rather to many people. Data is also communication and signaling, it is shared between many. The collective production and use of data create technical and social challenges what may be missed in the discussions if we speak about human centric personal data purely in individualistic terms. Dawn Nafus from Intel Labs and Mad Price Ball from Open Humans Foundation dive deep in to the challenges and solutions of collective personal data.
N of Many Ones
Dawn Nafus, Senior Research Scientist at Intel Labs
Personal data matters both individually and collectively, and yet there are huge gaps as we connect the dots between the individual and the group. What has to happen to be able to successfully move between the two? In a world where individuals control data, not researchers or companies, this is not a simple matter of data aggregation. What kind of public engagement can reasonably be expected, and what kind of outreach do we have to do for there to be meaningful participation? I’ll use an example from a recent environmental health project to show the challenges and opportunities that emerge in what I call the “N of many ones” approach.
Open Humans & Open Sourcing Ourselves
Mad Price Ball, Executive Director at Open Humans Foundation
How can we empower ourselves around our personal data – and potentially contribute to a greater good? In this talk I share our work with Open Humans, a platform and community that helps individuals to access their personal data, aggregate it, and choose when to share. I’ll share vignettes on how this enables personal data exploration, citizen/patient-led projects, academic research, and more. Various projects – ours and beyond – may inspire us to see the potential our data has to empower ourselves, as individuals and communities, and contribute to a greater good.
Session is moderated by: Minna Ruckenstein