cancer

Open Cure: When Digital Humanities Meet Medical Humanities

body, digital 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.

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New discovery: actually Internet CURES cancer!!!

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By Antonio A. Casilli (Centre Edgar-Morin, EHESS, Paris)

After putting online a post that satirized an article claiming that electronic media give cancer recently published by Aric Sigman in The Biologist (2009), I’ve undergone a phase of serious self-criticism. Sure, I was in fierce disagreement with the author. But the general tone of my post was un-academic and rude. Ad hominem attacks really don’t belong in science. Turns out I am a dismissive prick. What do you know? 😀

So I decided to make it right by you folks, and to hone my argument by providing evidence – hard fact-based scientific evidence. I did it like any other scientist would, by collecting a bunch of data, tinkering with them a little, cherry-picking something, hiding something else, and wrapping everything up in fancy graphics! What did I get at the end of the day? A revolutionary discovery: not only Internet does not give cancer, it actually cures it!

How did I come up with such a sensational breakthrough? First, I took a random data set from the United Nations Statistics Division. Then I arbitrarily decided that Internet access would be an accurate proxy for actual Internet use. So I asked myself the following question: do countries that are more connected (in terms of percentage of people having Internet access) have a higher number of deaths for two common types of cancer – breast for the ladies, prostate for the gents? For the sake of completeness, I focused on 2002 (because data were not available for several countries before that year). I put everything in my statistical blender, and this is what I obtained:

Correlation Internet access and prostate cancer deaths - via Gapminder.org

Correlation bw Internet access and prostate cancer mortality - via Gapminder.org

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Use social networking services, get free cancer

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By Antonio A. Casilli (Centre Edgar-Morin, EHESS, Paris)

In a recent lecture at the University Paris Descartes I had mentioned an article published in The Biologist by Aric Sigman, Fellow of the English Royal Society for Medicine, claiming that intensive use of social networking is linked to biological changes in humans: genetic alterations, increased morbidity/mortality for cardiovascular disease, and decreasing survival time for cancer patients. It’s the infamous “Facebook gives cancer” argument, that has caused quite a stir in the UK. The article, that you have here in pdf version, provides a clear illustration of what I described elsewhere as “the dialectic between the stethoscope and the mouse” – i.e. the ambivalent relationship between contemporary biomedicine and digital culture (Casilli, 2009).

In his always amazing Bad Science blog, Ben Goldacre has already bashed the article to a pulp from a medical standpoint, showing that the underlying research is far from being scientifially robust – a medical euphemism mainly used to dismiss despicable bullshit.

From the sociological point of view, I am pretty astonished to discover that all of Sigman’s argument is based on one assumption: that the increase in social networking website usage automatically results into a decline of face-to-face contact which in turn equates to social withdrawal – which causes cancer. This graph, featured in the article, pretty much sums it up:

facebookcancer

Source: Aric Sigman 2009

For the non-initiated, that basically reads: “The more you surf on the Web, the more you grow lonely and your friends and family turn their backs on you and in the end you DIE ALONE like a dog”.

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