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