Pour la septième séance de mon séminaire Étudier les cultures du numérique : approches théoriques et empiriques, nous avons eu le plaisir d’accueillir Paola Tubaro, maître de conférences à l’Université de Greenwich (Londres) et chercheure au CMH-CNRS (Paris), pour une présentation du projet de recherche franco-britannique ANAMIA. Voilà ses slides :
Open Cure: When Digital Humanities Meet Medical Humanities
The French translation of this essay is available on OWNI, as the first installment of my column Addicted To Bad Ideas.
While studying urban violence, I bumped into data artist and TED fellow Salvatore Iaconesi (aka xDxD.vs.xDxD), who was working on some impressive riots visualizations. A couple of weeks ago, he published a video on his website bearing quite upsetting news…
[Video: Salvatore Iaconesi – My Open Source Cure]
Despite my initial disbelief, that was not a hoax, nor a situationist artwork. Admitted to San Camillo Hospital in Rome and diagnosed with a brain cancer located in his frontal lobe, Iaconesi was facing limited therapeutic options (surgery, chemo or radiotherapy) and a poor prognosis (gliomas are almost never curable).
Determined to look for further advice, he grabbed his medical records and headed back home. Where he discovered his MRI and scans were in proprietary format… Luckily the self styled “software pirate artist” and creator of the collective Art is Open Source, had a couple of hacker tricks up his sleeve. He cracked the files, put them online, invited feedback from medical experts and laypersons. In a couple of days he started receiving everything from get well emails, to scientific literature references, to health professionals contact information, to tips for cutting-edge therapies. Of course, it was a mixed bag. So he decided to map, sort out and analyze these disparate contributions by means of a data visualization tool of his own design. The scrollwheel he now updates daily on his website is a navigable graph providing access to medical records and relevant information delivered by the online community rallied around his “open source cure”.
[Screenshot: Art Is Open Source – La Cura / The Cure]
Open cure and the Medicine 2.0 Zeigeist
The cultural significance of Iaconesi’s case is manifold. The most straightf orward way to address it would be to focus on the privacy implications of his online quest for an open cure for cancer. Is the sharing of medical records and the crowdsourcing of a treatment indicative of a shift in our relationship to the personal dimension of illness? Although the artist’s decision to “go open” about his condition is perhaps appealing for the press running the usual media circus around him, this question is far from original. Prominent cancer survivors (the likes of Jeff Jarvis or Howard Rheingold) have long argued that there’s a curative potential in Internet “publicness”. The creation of networks of people providing emotional support and sharing experiences as well as medical advice is hardly a novelty. This resonates with the experience of millions of cancer bloggers and discussion forum members, documenting their lives and daily struggles online.
The number of my online friends and Dunbar's not-so-hidden scientific agenda
First of all, you might want to read this remarkably insightful blog post featured in Paola Tubaro’s Blog – about a recent article on social network size, online friending and Dunbar’s number published in Cyberpsychology. Here’s the complete reference to the article:
Pollet, T., Roberts, S., & Dunbar, R. (2011). Use of Social Network Sites and Instant Messaging Does Not Lead to Increased Offline Social Network Size, or to Emotionally Closer Relationships with Offline Network Members Cyberpsychology, Behavior, and Social Networking, 14 (4), 253-258 DOI: 10.1089/cyber.2010.0161
As for the analysis, let me just quote from Paola (it’s not that I’m lazy, but I tend to agree with pretty much evertything she says, especially because she draws heavily on previous posts and conferences of mine dealing with the same subjects ;P)
How many friends do you have? « Paola Tubaro’s Blog
What I would like to add here is just that the article might not be all that interesting, weren’t it authored by Robin “Dunbar’s number” Dunbar himself. (more…)
Empowered patients, greedy pharmacoms and the coming 'eHealth divide'
Who wants to appropriate the so-called “eHealth revolution” and put it to commercial use? Just have a read through this scary bit of pharmacom fireside chat freshly published on The Pharmaceutical Executive Magazine website – then we’ll talk.
Thus spoke Sarah Krüg, from the Medical Education Group at Pfizer. Patients empowerment via online databases, open information sharing and web-based self-help groups represents a business opportunity for pharmacoms (but then what doesn’t?). The danger that the biomedical monopoly over health care be replaced by an even more pervasive pharmaceutical merchandising is a clear and present one.
Apomediation and Medicine 2.0 have to proceed in close association with a big dose of vigilance. Vigilance to prevent astroturfing in online communities. Vigilance to be aware of drug-pushing. Vigilance to avoid that bridging the digital divide (the age, sex and socio-economic status gap in accessing online information) doesn’t result in creating a new “eHealth divide” between those who have access to quality online information about health care – and those who are prey of Big Pharma disinformation.
Doctoring Fukushima: from nuclear catastrophe to natural bodily function
In the wake of the Fukushima nuclear accident, an interesting video has been circulating. Disguised as an educational animation targeting children, it is actually an anonymous pro-nuclear propaganda feature based on a tweet by media artist Kazuhiko Hachiya. Nuclear Boy (a character representing Fukushima Dai-Ichi nuclear plant) has a bad case of stomach-ache. A series of defecation-based incidents ensue. Doctors take turn to ease his condition and hopefully they will help him avoid ‘Tchernobyl diarrea scenario’.
Scatological humor aside, what is interesting here is the concurring efforts to medicalize and to naturalize a nuclear disaster. If the explosion of a reactor is comparable to defecation, it becomes a natural bodily function. It is thus inscribed in the normal course of events. It is even vital that Nuclear Boy ‘passes some gas’ at some point. In this case, like in others I’ve been discussing in this blog, the negative effects of human-made technologies are normalized by inscribing them into a medical discourse about the body. As far as medical knowledge is summoned up to provide scientific backing to the claim that ‘everything is for the best’, the entire event becomes a moralizing hygiene lesson comparable to those that early 20th institutions used to deliver to the masses.
What is medicine all about? Staring at screens
Recently, the New York Times’s blog dealing with health and medicine, Well, featured an interesting piece on Desktop medicine. The author Pauline W. Chen, M.D., maintains that medical profession has been profoundly changed by the advent of desktop computers. In the past, doctoring was all about “sitting at patients’ bedside”. Today, it’s basically about staring at a screen. The article is quick to point out that this reflection is not exempt from a certain nostalgic idealization of the past.
I would add that saying that “we have gone from bedside medicine to desktop medicine” as a bit of an ideological dimension to it, too – as far as it relies on a technodeterministic meta-narrative (“computer-mediated communication is superseding face-to-face social interaction”, “machine automation replace human labour”, “robots will rule the world”, and so on). (more…)
E-Santé : Résistance, autonomie et environnements apomédiés
La quatrième séance de mon séminaire EHESS Corps et TIC : approches socio-anthropologiques des usages numériques a eu lieu le jeudi 27 janv. 2011. Le sujet traité : e-santé, médecine 2.0, le rôle des professionnels de santé, des collectifs de militants des droits des patients et des pouvoirs étatiques. Voici, comme d’habitude, les slides.
ATTENTION CHANGEMENT DE DATE : La prochaine séance (où il sera question de corps dans les médias sociaux) aura exceptionnellement lieu le VENDREDI 11 février 2011 de 17h à 19h en SALLE 2, EHESS, 105 bd Raspail 75006 Paris. Pour s’inscrire, il suffit de m’envoyer un petit mail gentil.
Les Avatars : surpuissance, régénération et devenir technologique du corps en ligne
La troisième séance de mon séminaire EHESS Corps et TIC : approches socio-anthropologiques des usages numériques a eu lieu le jeudi 13 janv. 2011. Le sujet traité : la figure de l’avatar, son rôle dans la culture numérique, ses liens étroits avec, d’un côté, les expériences vidéoludiques, de l’autre les applications biomédicales. Voilà les slides et une bibliographie des textes cités.
La prochaine séance (où il sera question d’e-Santé) aura lieu le jeudi 27 janvier 2011 de 17h à 19h en salle 5, EHESS, 105 bd Raspail 75006 Paris. Pour s’inscrire, il suffit de m’envoyer un petit mail gentil.
My article "A History of Virulence" finally published in Body and Society
Sage journal Body and Society vol 16, n. 4 is finally out! Pardon my enthusiasm, but this issue features my 30-page essay A History of Virulence: The Body and Computer Culture in the 1980s: a killer mix of hackerdom, virality and computer nostalgia that also happens to be IMHO one hell of a contribution to the cultural history of the body in cyberculture.
Abstract: The recent turn in ubiquitous computing challenges previous theories of ‘technological disembodiment’. In a mediascape where technology permeates bodies, the current discourse of viral information insinuates elements of fear and risk associated with both physical presence and computer usage. This article adopts a socio-historical approach to investigate the factors underlying the early emergence of such features of our social imaginary by tracking them back to the computer culture of the 1980s. Analysing both mainstream and underground press sources from 1982 to 1991, a discursive core is revealed that revolves around the ‘computer virus’ metaphor. Popularized in this period, this notion came to resonate with mounting moral panic over the HIV/AIDS epidemic. Anxieties about the body in computer culture are then conceptualized (and historically contextualized) along two dimensions: first, the political proximity between HIV/AIDS activists and computer hackers during the FDA clinical trials controversy of 1987—8; and, second, the ideological reinforcement provided by academic progressive elements to these political actions. The implications of these results are discussed.
A few weeks ago, I published a “autor’s cut” version on this very blog (here part1 and part2) and you can download the unread proofs by clicking here (not for citation, please). Of course, if you want to download the published version, help yourself here. You might as well drop me a kind email and ask for a certain attachment 😉 And if you want to cite the article, because that’s what academics do, please find enclosed the complete reference.
Casilli, Antonio A. (2010). A History of Virulence: The Body and Computer Culture in the 1980s Body & Society, 16 (4), 1-31 DOI: 10.1177/1357034X10383880
Archéologies du Cyborg – Hybridation, contamination, individuation
La deuxième séance de mon séminaire EHESS Corps et TIC : approches socio-anthropologiques des usages numériques a eu lieu le jeudi 9 déc. 2010. Le sujet traité : la notion de cyborg, son impact sur la culture numérique contemporaine dès la parution du célèbre Cyborg Manifesto de Donna Haraway. Voilà les slides et une bibliographie contenant les textes cités.
La prochaine séance (où il sera question d’avatars bleus) aura lieu le jeudi 13 janvier 2011 de 17h à 19h en salle 5, 105 bd Raspail 75006 Paris. Pour s’inscrire, il suffit de m’envoyer un petit mail gentil.