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I published this essay on Culture Digitally.
Angelina Jolie’s powerful op-ed confession in Monday’s New York Times about her preventative double mastectomy has many people talking about her breasts and her choices. But we also need to talk about her data: Who owns it and who gets to use it?
Currently there are very few clinical actions that can be taken based on an individual’s genetic data. It is simply not routine to perform genetics tests. One of the most commonly used test for the mutations in the BRCA1 and BRCA2 genes is produced by Myriad, currently costs $3,000, is targeted at only those women who think they have inherited risks. It is also at the center of a case currently before the Supreme Court over whether the company had the right to patent the isolation of the sequencing of BRCA (and other) genes. Several critics, including communication scholar Kembrew McLeod, argue that that Myriad’s intellectual property actions have harmed science and prevented genetics testing from becoming more cost-effective and widespread.
Other consumer options are here now. One of the best-known of these is 23andme which provides direct-to-consumer testing of several “snips” or single-nucleotide polymorphisms of genetic interest, including three of the mutations in the BRCA1 and BRCA2 genes. For $99 women can test for these three mutations, without having an expensive full test ordered by their doctors.
There is a growing community of “health hackers” and hobbyists who use consumer-grade electronics to generate large amounts of data about their wellbeing. The most visible of these is the Quantified Self community. But most doctors and nurses don’t want to, don’t know how to – or aren’t allowed to – work with such data. So Jolie’s circumstances are privileged in several ways. She could afford non-standard tests. And, she could afford a level of care with medical professionals willing and able to work with such data.
The distinction here is that the information is going to “consumers,” provided by 23andMe without any medical expertise, advice or recommended clinical actions. Such tests provide information – about ancestry, about risk factors – but not the kind of data that is currently used by doctors to make medical decisions. These tests are paid for out-of-pocket and are marketed as being for wellness and curiosity’s sake, and not for informing health decisions. In fact, it would be illegal and unethical for 23andme to provide medical advice. They provide instead simply data, which science and technology studies scholars know is never simple. In exchange for the reduced price for the data, 23andme’s business model is to pool the data from many consumers into a research class that may provide new “big data” insights into genetics research. Their hope is a technological one that echoes Linus’s Law on crowd-sourced code-testing: with enough eyes, all mutations are shallow. As it is stated on the 23andme website: “Our research is driven by our community. A big thank you to our customers who make our research possible.”
Yet who might financially benefit from this research by a for-profit company is not made clear. The genetics information of 23andme customers is not protected as health information, and therefore not subject to the stricter HIPAA regulations on patient-information privacy. It is considered an asset of the venture-backed startup company in part because people consent to participate in 23andme’s research as part of its terms of service. Meanwhile, people using direct-to-consumer tests like these still need to figure out what to do with the information they are buying, how (or if) to talk to their doctors about it, and how it fits into decision their own making.
That brings us back to Angelina’s breasts. One good thing about her op-ed is that she recognized her own privilege. Preventative mastectomies based on genetics testing is still not a standard practice, and her particular case is very rare. But Jolie has had access to care above and beyond the recommended standards and the money to afford it. More than that, she was able to navigate the information fault lines between health data of medical professionals and direct-to-consumer wellness data. She was able to buy, so to speak, access to her own data for her own decision making without sacrificing her privacy in exchange for it. We should all be so lucky.
This is a dialogue I helped organize between myself, Mary Gray, Laura Miller, and Tom Streeter about his new book, The Net Effect. This is my review.
Bruno Latour famously appealed to scholars to investigate the “socio-technical assemblages” that comprise our contemporary technologies. He is also famously vague about how to do that, and that’s precisely what Tom Streeter teaches us in The Net Effect.
The Net Effect covers a broad span of the things, procedures, ideas and cultures that make up what we call “the internet”–microcomputing, technical standards development, and open software, yes. But also ideologies, cultural beliefs, and historical antecedents. As a result, the history of things plays second fiddle here relative to the history of ideas. This is too bad, because that’s really where Streeter shines and adds a refreshing new lens on our ability to think through communication media.
The Net Effect is reminiscent other great social histories of communication media such as Claude Fischer’s America Calling and Fred Turner’s From Counterculture to Cyberculture. Streeter’s history is just as impressive in its cultural scope as these two, but surpasses them in his reach for a much bigger and unbounded object, “the internet.”
The Net Effect is almost – I stress almost—too broad in scope, and at several points as a reader I wanted more from the book on all of these topics. The ambition of this book is both its key strength along with one of its few shortcomings. There are the roots of three different histories in this book, and I can only hope that Tom will decide to take those up for his next projects to produce a three volume set on the histories of the internet.
The strength of this broad scope of The Net Effect is that it allows Tom to draw connections across the “assemblage” of what we call internet. It reminds me of the project that Thomas Hughes, the comparative historian of technology, sets out for himself in Human-Built World: that technology development in the US and German traditions can be understood as culturally rooted in relationship to our competing desires to control our world and to let God make the plans. Like that book, this one is as ambitious in its scope and impressive in its ability to build a rich cultural history that links ideas, literature, and discourse. Streeter’s focus is on the role in computing of the romantic individual, “a self that is understood as the source of a dynamic, inner experience that calls on us to live creatively beyond the bounds of predicable rationality.”
I was left wondering how Streeter makes sense of the particularly American cultural imprint on the internet when the contemporary practices are global. From China to Facebook, we have multiple practices that now comprise this thing we call the internet. I was left wondering what how expansive and elastic Streeter’s historical explanations can be for contemporary experiences.
Streeter carefully traces what he calls “thrilling ideas,” and herein may be his single biggest contribution. I would like to propose that The Net Effect is enormously useful as a methodological guide for doing cultural, sociologically informed work on technology and ideas. Theoretically, we have long known that ideas and ideologies of technology shaped by communities, culture, and institutions and social structure. The Net Effect is instructive in how to do this by tackling the “microstructural problem of the interplay of idea and institutions by looking at connections on three levels: shared felt experiences association with technologies; cultural traditions that people draw on to make sense of those experiences; and articulations between those linked traditions and experiences with political ideas, particularly political ideas that shape policymaking around internet structure.” In this, Streeter creates a textured look at the connection between objects and institutions, and anyone wanting to reproduce this method would be well served to look at how he lays out the rise of personal computing.