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Ethnography in Communities of Big Data: Contested expectations for data in the 23andme and FDA Controversy

IMG_2834 Brittany Fiore-Silfvast (@brittafiore) is a PhD candidate in Communication at the University of Washington and she holds an MA in sociocultural anthropology from Columbia University. Her research focuses on the relationship of technology and emerging cultural and organizational forms. Her work cited in this article was supported in part by an NSF Doctoral Dissertation Improvement Grant and an Intel grant.

Editor’s note: One of the disciplines big data is most strongly influencing is medicine, and here Brittany Fiore-Silfvast (@brittafiore) applies her expertise to examine the interplay between health and technology to understand the implications of today’s unprecedented levels of patient data collection and analysis (although, notably, seldom including access to the data by those very patients who produced it).

Brittany hits upon a key issue with her post: seeing “big data” as a means of eliminating uncertainty through statistical analysis. While the elimination of uncertainty through statistical analysis is nothing new, the difference today is the scale at which collection and analysis of such data is unfolding and the diversity of the fields in which it is occurring.

Read on to discover the nature of conflict between the main personal genetics testing company 23andme, the importance of and difference between big data, small data, thick data, and DaM data, and the role that “Blue Suede Shoes” play in all of this.

For more posts from this EPIC edition curated by  editor Tricia Wang (who gave the opening keynoted talk at EPIC this year), follow this link.
23andme box

Scott Beale / Laughing Squid laughingsquid.com

Across the field of health and wellness there is a lot of talk about data, from consumer self-tracking and Quantified Self data, to data-driven, personalized health care, to data-intensive, crowd sourced, scientific discovery. But what are these different stakeholders talking about when they talk about data and are they talking about the same thing?

At EPIC, in the “Big Data/Ethnography or Big Data Ethnography” session, I presented on this topic drawing from our ethnography of the impact of consumer big and small data on institutions of healthcare. In this post I use the recent controversy between the FDA and personal genetics testing company, 23andme, to exemplify many of the concepts my co-author, Dr. Gina Neff, and I develop in our EPIC paper “What we talk about when we talk data: Valences and the social performance of multiple metrics in digital health”, rather than simply re-present them.  I also demonstrate how ethnography can be leveraged in the context of so-called “big data” or data intensive transformations in science and practice. Read More…