The Participatory Condition: Open Source Cancer. Brain Scans and the Rituality of Biodigital Data Sharing

Together with Alessandro Delfanti we have just finished writing a chapter on the forthcoming book “The Participatory Condition“, forthcoming on the University of Minnesota Press.

The chapter is titled: “Open Source Cancer. Brain Scans and the Rituality of Biodigital Data Sharing“, and it deals with La Cura project, which we created when Salvatore Iaconesi became diseased with brain cancer, and decided to turn the situation into a biopolitical performance interweaving hacking, society, anthropology and sciences.

From the chapter:

“While patient reclamation of the medicalized body is becoming a more common subject of discussion, by proposing the concept of the ritual we have here focused on the cultural significance of biodigital data: once liberated through hacking from their objectifying role in the context of medical institution, open source data provides a commons upon which new forms of digital solidarity can emerge.47 In doing so they can trigger public responses which enable collective reappropriations of the experience of cancer and other illnesses. Against techno-determinist ideologies, we also suggest that, by performing such rituals, members of digital countercultures—such as hackers—can turn to digital technologies, rather than only their bodies, as a battleground for the reconfiguration of social and political possibilities.”

The chapter will be featured in the forthcoming “The Participatory Condition“, a book resulting from the international dialogues originating from “#PCond. The Participatory Condition“, an International Colloquium held in Montreal at the Museum of Contemporary Art on November 15 and 16, 2013. The Colloquium’s main objective was to assess the role of media in the development of a principle whose expansion has become so large as to become the condition of our contemporaneity. The book is forthcoming and will be published in 2016.

The chapter, in an early, pre-release version, can be accessed at: http://www.escholarship.org/uc/item/0744f82b#

You can cite the chapter as:

Delfanti, A. and Iaconesi, S., “Open Source Cancer. Brain Scans and the Rituality of Biodigital Data Sharing,” in Barney, D., Coleman, G., Ross, C., Sterne, J. and Tembeck, T. (eds): The Participatory Condition. Minneapolis: University of Minnesota Press (forthcoming).

 

 

La Cura, at Wave, with Susanna Pozzoli

La Cura will be featured at Wave, Collective Intelligence, an exhibit promoted by BNP Paribas, in Paris at the Parc de la Villette, from September 10th to October 5th 2014 through a video by artist Susanna Pozzoli.

Click HERE for some more information about La Cura at Wave.

Click HERE to know more about La Cura, an Open Source Cure for Cancer.

For the exhibit, a video has been created by artist Susanna Pozzoli, a beautiful, insightful contribution to La Cura:

 

La Cura at Participatory Medicine in Montreal

La Cura, an Open Source Cure for Cancer, will be presented at McGill University for Participatory Medicine, a conference with Patrick Dubé (Living Lab SAT/CHU Ste-Justine), Alessandro Delfanti (Media@McGill) and Salvatore Iaconesi and Oriana Persico (Art is Open Source).

More info on McGill’s website: Media@McGill presents Participatory Medicine

Date:

Thursday, February 13, 2014 – 17:30 to 19:00

Participatory Medicine is a conference with Patrick Dubé (Living Lab SAT/CHU Ste-Justine), Alessandro Delfanti (Media@McGill) and Salvatore Iaconesi and Oriana Persico (Art is Open Source).

Thursday, February 13 at 5:30 p.m.

Leacock 232, McGill University

As part of our current focus on Participatory Media, Media@McGill presents two innovative case studies in Participatory Medicine, exploring the creative ways in which networked communications are currently being used to empower patients and patient communities.

Patrick Dubé, of Umvelt Service Design, coordinates a Living Labin partnership with the Société des Arts Technologiques (SAT) and the CHU Sainte-Justine children’s hospital in Montreal. His presentation will address how digital, interactive and immersive arts practices contribute to the humanization of health care for young hospitalized patients in this “living laboratory.”

La Cura, a web-based experiment in a crowd-sourced “cure” for cancer, will be presented in the form of an exchange between Media@McGill’s Postdoctoral Fellow, Alessandro Delfanti, and Art is Open Source members Salvatore Iaconesi and Oriana Persico. Diagnosed with brain cancer in 2012, hacker and designer Salvatore Iaconesi published his personal medical data in an open format online, and invited the public to respond. The result attests to vast range of what a cure might entail in the information age (www.opensourcecureforcancer.com).

The conference is free and open to the public.

Presentations

Patrick Dubé – Health Care Centres as Innovation Social Hubs: The Living Lab Experience

At the heart of unique experiences involving the mind, the heart and the body through pain, joy, birth, illness and death, health care centres are often the seat of a complex symbolism, which goes beyond the delivery of care. In a society that focuses more on the person behind the disease and on the experience behind the care, the concept of “hospitality” gradually returns to its original sense of welcoming, of dialogues, of collective sense-making through a new phenomenon: user-driven open innovation. Through several examples, mostly living labs from the international and local scene, we will illustrate how seeing health care centres as social hubs can enable new forms of technological and social innovation, not only through an actualization of the patient-partner relationship, but also through an active participation of civil society as a whole.

Salvatore Iaconesi and Oriana Persico – La Cura: an Open Source cure for Cancer

In September 2012 Artist, Engineer and Hacker Salvatore Iaconesi was diagnosed with a brain cancer.

He decided to turn his tumor into a global bio-political performance to reclaim his complexity as a human being and, in the meanwhile, to break new grounds performing a radical experiment: publish online his own medical data to crowdsource his cancer, engaging people from all over the world to find a cure and to discover what it could mean to be cured in the information age.

The narrative interweaves themes such as Open Data and privacy, to propose an analysis of the anthropological, emotional, financial, technological, spiritual, scientific, sociological, bio-political and philosophical complexities of Medicine in the digital era.

Cancer – and the cures suggested by people from all over the world – becomes a radical example of our condition as contemporary human beings, a powerful metaphor that becomes useful to define ways in which to express and share art, creativity, scientific research, experiences, stories and ubiquitous conversations in ecosystemic, holistic ways, fostering the vision of human societies which are aware that their well-being depends on the well-being of all of their members.

The story and the process show how we now have the tools – technological, methodological, relational and anthropological – to enable people to be aware, active and engaged agents of their societies.

An Open Source Cure.

Biographies

Patrick Dubé After obtaining a Masters degree in Anthropology and conducting Ph.D. studies in geomatics, Patrick Dubé started a career as a research scientist in the field of health care ICT. Since 2006, he has helped organizations enhance their creative and innovation practices and methodologies. Directly involved in several open innovation initiatives with cities, SMEs, non-profit organizations and citizen communities, he currently leads the SAT/CHU Sainte-Justine Living Lab in the field of health care humanization. He also presides the Montreal Table of living labs.

Alessandro Delfanti is a postdoctoral fellow at Media@McGill, McGill University, Montreal, where he works on the role of participatory media in contemporary biomedicine and has taught an undergraduate seminar titled Online Cooperation in Daily Life. Alessandro also teaches Sociology of New Media at the University of Milan and is a member of the research group on science communication at SISSA, in Trieste. As a journalist he writes about science and digital cultures for several Italian newspapers and magazines. He is the author of Biohackers. The Politics of Open Science (London: Pluto, 2013) and of Introduzione ai Media Digitali (Bologna: Il Mulino, 2013).

Salvatore Iaconesi is an interaction designer, robotics engineer, artist, hacker. TED Fellow 2012 and Eisenhower Fellow since 2013.

He currently teaches Interaction Design and cross-media practices at the Faculty of Architecture of the “La Sapienza” University of Rome, at ISIA Design Florence, at the Rome University of Fine Arts and at the IED Design institute.

He produced videogames, artificial intelligences, expert systems dedicated to business and scientific research, entertainment systems, mobile ecosystems, interactive architectures, cross-medial publications, augmented reality systems, and experiences and applications dedicated to providing products, services and practices to human beings all over the world, enabled by technologies, networks and new metaphors of interactions, across cultures and languages.

His artworks and performances have been featured worldwide in museums, at festivals and conferences.

Salvatore actively participates to global discussions and actions on the themes of freedoms, new forms of expression and on the future scenarios of our planet from the points of view of energy, environment, multi-cultural societies, gender mutation, sustainability and innovation on both society and business, collaborating with institutions, enterprises and international research groups.

Oriana Persico holds a degree in Communication Sciences, and is an expert in participatory policies and digital inclusion. She is an artist and writer. She has worked together with national governments and the European Union towards the creation of best practices, standards and research in the areas of digital rights, social and technological innovation, Digital Business Ecosystems (DBE), practices for participation and knowledge sharing. Oriana writes critical, scientific, philosophical and poetical texts that connect to the cultural, sociological, economic and political impacts of technological innovation. She is an expert on the formal analysis of cultural and social trends, with a specific focus on social networks. She creates breakthrough communication campaigns, performances, research methodologies and strategies.

La Cura on Usbek & Rica

La Cura on Usbek & Rica

La Cura on Usbek & Rica

La Cura, the Open Source Cure for Cancer, has recently been featured on the Usbek & Rica Magazine.

You can find the article here: Portraits – Salvatore Iaconesi “Mon Cancer en Open Source”

and kudos go to Agata Marszałek for the beautiful illustrations!

Salvatore Iaconesi on Usbek & Rica

Salvatore Iaconesi on Usbek & Rica