Tag Archives: 23andme

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…

Alondra Nelson on the Social Life of DNA

Alondra_1.5

Alondra Nelson

Ed. Note: Alondra Nelson (@alondra) is an interdisciplinary social scientist who writes about science, technology and inequality. Her forthcoming book is The Social Life of DNA. In this interview we did via Skype, she talks about the implications of the expanding use of genetic analysis, touching on subjects such as the early Black Panthers’ use of community-based genetic screening for sickle cell anemia, the criminal justice system, and popular TV shows like Finding Your Roots and Who Do You Think You Are.
(PS: This edition of EM comes with a soundtrack. We asked Dr. Nelson what music the topics she is researching brought to mind for her, and she followed up with an email noting all the songs contained in this post, which will also be in our playlist.)

(Slideshow image:  DNA CC BY MIKI Yoshihito)

I wanted to ask you first about what you’re working on these days. I think you have a new book coming out.

My book The Social Life of DNA (@sociallifeofdna) is coming out next year with Beacon Press. “The social life of DNA” is both a methodological phrase and also an analytical or theoretical claim. The methodological use, you won’t be surprised to hear, comes from Arjun Appadurai and his edited collection The Social Life of Things, which was about material culture – much more material than the genetics ancestry testing that I follow in my work. Appadurai’s mandate is that scholars can understand social meaning, in part, by following things around. That important insight was from the late 1980s. And, then more proximate to us, about six or seven years ago Sarah Franklin and Celia Roberts wrote a book called Born and Made, which was on preimplantation genetic diagnosis, or PGD. In that book, they discussed what they called “the social life of PGD;” as ethnographers, they were in some regards following tests around and following users around. People who had done the diagnostic tests, and the various stakeholders who were involved in the tests…

I think what’s different about the way that I’m using [the social life of things model] is that there’s an ephemerality to genetics; you can’t see or follow necessarily with your eye — the gene or the genome. You can’t even really follow the genetic ancestry tests, which are often inferences about forms of identity: racial identity, ethnic identity. Increasingly, they’re inferences about health factors and the like. It’s harder to follow these around.

Interpreting genetic ancestry tests

[Jeans by Quadron]

In my earlier ethnographic work, I was trying to understand what people got out of the tests, because you’re basically sending cheek cells to a company in a FedEx package, and you get back pieces of paper that give you inferences about who you are. In some instances you’re getting sets of genetic markers written down on these pieces of paper, but the untrained eye doesn’t really know what to make of all of those As, C, G, and Ts. At any rate, these lists of genetic markers or “certificates of ancestry” that one receives are the outcome of the process. These artifacts aren’t always interesting in and of themselves. Far more interesting, I found, was the social life of the test results. I came to follow the way that these genetic ancestry tests came to be used in ways that we couldn’t necessarily anticipate. Read More…