An Open Source Cure for Cancer?: Paticipatory Medicine in the Digital Realm

By lilym

Diagnosed with brain cancer in September 2012, Italian designer, computer engineer, and hacker Salvatore Iaconesi decided to publish his personal medical data online, inviting the public to respond. The result was the creation of an online community of cancer survivors, family members, doctors, and other allies who came together to support Iaconesi (and each other) in treatment. La Cura therefore came to embody a collaborative social space, uniting treatment and healing outside of the hospital setting.

The project was motivated by Iaconesi’s experience as a patient—an experience he has described as dehumanizing and altogether isolating. According to Iaconesi, after diagnosis, he felt his individual identity disappear; in becoming a patient, his complexity as a human being was ignored to the point where he became a set of data for doctors to analyze and manipulate. Personal identity had been taken out of the equation, and data (rather than the human condition) came to determine his treatment.

La Cura essentially turned this dynamic on its head, appropriating Salvatore’s medical data and breaking the patient paradigm. The data was published online where anyone could access, interact with, or respond to it, thereby producing their own creative meaning. No longer a medical commodity, “the cure” became a social relationship born out of the interactions of the public. Salvatore’s project developed into an important global performance where personal expression marked a social consciousness. Cancer, as a social performance, is perhaps more suited to such treatments.

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Brain scans from Iaconesi’s medical record.

In the hospital setting, data associated with the body is expressed in language particular to doctors and other medical practitioners. Iaconesi was frustrated to find that his digital medical records were in a closed, proprietary format that he could not even open on his own computer. Feeling that his humanity had been replaced by restricted clinical records, he began with translating electronic medical records into “personal open data”.  As he explains on his website, he “cracked them[…,]opened them and converted the contents into open formats, so that [he] could share them with everyone.” (Iaconesi). He began by sending the data to doctors, and publishing their responses using open formats so others with his condition could benefit from the information. He compelled visitors to his website to “grab the information about my disease[…]and give me a CURE: create a video, an artwork, a map, a text, a poem, a game, or try to find a solution for my health problem.” (Iaconesi).  Obviously these formats are not one would traditionally associate with medical “cures,” but they serve to reframe the notion of “the cure” in as a more socially and community-based creation. At the end of this experiment, Iaconesi received, 35 videos, 600 poems, 15,000 testimonies, 500 reviews of doctors, and over 50,000 different strategies to cure his cancer.

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Portion of relational graph of submitted “cures”. (Full version can be found on La Cura website)

Resistance to these types of programs is often heard from healthcare practitioners and medical institutions that see the digital sphere as potentially misleading and unreliable. While these concerns are certainly founded, the potential for positive change in healthcare through such initiatives cannot be overlooked: digital spaces of interaction such as the internet allow for the public negotiation of power and an active sort of social creation that can be found nowhere else.

In open source, “a common problem is placed in a common space, and people from around the world turn themselves to working, in parallel, on this problem.” (Lessig, 107) This, in effect, turns the structure of governance on its head, as the control of information is central to power. Through La Cura, Iaconesi explores how networked communications are used to to empower both patients and patient communities. The internet both pluralizes flows of information while simultaneously widening the scope of commentary.

Though not quite what Larry Diamond has envisioned, parallels can be drawn between Iaconesi’s project and “liberation technology”. According to Diamond, liberation technology “is any form of information and communication technology (ICT) that can expand political, social, and economic freedom.” (Diamond, 70). Aiming to humanize and health care through the use of participatory media and digital communication, La Cura circumvents the traditional power structures of information—here, the ones that structure medical knowledge. Health care has been recast in a decidedly social way, shifting not only the dynamics of the patient/practitioner relationship but also the overall approach to disease treatment. Actively performing their own healing process with the use of digital media, users are empowered by such a reimagined system, constructing a reflexive space of creative healing.

More democratic healing practices target all spheres of a patient’s life and wellbeing. The environment of such living labs are co-developed with users—not just for them—to transform the healthcare center into a social hub where a diverse array of individuals’ distinctive needs initiate creation, rather than normalization. As in La Cura, active collaboration and performance in a social setting initiates a unique thinking process that targets the healing of the individual human being, rather than isolated treatment of a medically-defined disease. This expansion of participatory medicine into the digital realm allows for a more inclusive and interactive form of whole person care. As health becomes regarded as more than just the absence of pain and suffering, the dynamics of illness and disease must be viewed within this expanded framework of social, mental, and community health.

References

Diamond, L. (2010). “Liberation Technology,” Journal of Democracy 21(3): 69–83.

Iaconesi, S. (2012). La Cura, an Open Source Cure. http://opensourcecureforcancer.com/

Lessig, L. (1999). “Open Code and Open Societies: Values of Internet Governance,” Chicago-Kent Law Review 74, 101–116. http://cyber.law.harvard.edu/works/lessig/ final.PDF.

Conservation and Access: Visiting the New York Academy of Medicine’s Rare Book Collection

By lilym

Located between Mount Sinai Hospital and the Museum Mile, New York Academy of Medicine is home to over half a million volumes, including a comprehensive collection of rare books and artifacts. I met with Arlene, the Reference Librarian of Historical Collections, in the gilded marble lobby of the Academy, where she brought me up to the Drs. Barry and Bobbi Coller Rare Book Reading Room.

Although it was originally intended only for the use of the Academy’s Fellows, the Library opened its doors to the public in 1878–about thirty years after its inception. The library grew rapidly throughout the late-nineteenth and early-twentieth centuries, expanding its collection mainly through personal and institutional donations from the Medical Journal Association, the Society of the New York Hospital, and the medical books of the New York Public Library. The Rare Book Room houses thousands of books, manuscripts, pamphlets, and artifacts relating the history not only to the history of medicine, but also natural history, philosophy, and the history of print.

Arlene was excited to show me some of the collection’s highlights, including a hand-painted first edition of Conrad Gessner’s Historiae animalium, pictured below. Gessner’s book–one of the most carefully-colored copies I’ve ever seen–speaks to a key concern of rare books libraries: that is, a preoccupation with the singular object. When every object is unique, “form and substance are indistinguishable.” (Cloonan, 236). The Library holds multiple copies of Gessner’s volume, each unique in coloration, providence, and form.

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These differences are carefully accounted for in the card catalogue, but what is particularly interesting is the fact that the majority of these details have been lost in the catalogue’s migration to the digital realm. Arlene explained how the temporary staff who created the metadata were not so careful in their work; not everything was catalogued or catalogued in sufficient detail. In effect, the particularities of the books as objects has been lost for users trying to access them online. As a center for this history of print, the Academy Library takes such considerations seriously.

For example,  I was shown a copy of a seventeenth-century natural history textbook in which its eighteenth-century owner added a watercolor observation of a beached whale. Arlene explained how, although the whale drawing is accounted for in the card catalogue, she wasn’t aware of it until a patron found it while doing research.IMG_20151020_114906242_HDR

Another example is an anatomy textbook with fore-edge paintings of William Harvey, John Hunter, and Edward Jenner. Although the book plate within describes the paintings, no where are they noted on the digital catalogue. The problems this raises in terms of accessibility of information are central to the concerns Arlene discussed with me.

In terms of the digital preservation, the library has not begun a comprehensive digitization project, but instead digitizes material for online exhibits. While the Library has hired freelance digitizers from time-to-time, the volume of work they can get done is often limited. The main problem seems to be lack of adequate funding for long-term digitization projects beyond money from federal grants. Moreover, further problems arise with conservation when rare material is handled for digitization–a threat that is perhaps not worth it for the librarians at NYAM in the long run. Archivists and librarians are well aware of scholars’ “failure to understand the pressures that make it impossible to save everything.” (Rosenzweig, 760). At the NYAM LIbrary, thousands of volumes of journals and theses had to be given away because of lack of space. This idea perhaps extends to the pressure to digitize rare material, which is not always technically or fiscally viable.

The main concerns of the collection’s librarians, therefore, revolve around conservation and access. The Library opened its Conservation Lab in 1982 with the aim to preserve its collection for future generations. Focusing on item-level treatment and storage considerations, the Lab is largely funded by grants and donations. Larger conservation projects, focusing on specific themes or bodies of work, therefore only occur once or twice a year. Facing a lack of funding, NYAM’s rare book librarians have been focusing more on smaller projects of careful storage, bounding up delicate books within acid-free supports and shrink wrap.

In this case, the digital collection is therefore more about access and the production of a coherent heritage. Arranged in online exhibitions, the Library’s digital collection speaks to the project of arranging historical material into a consistent narrative. The collection and preservation of heritage by institutions creates a “social memory by which popular significance becomes based on memory stores and historical materials. Therefore, ‘significance’ is consensual, but also hegemonic because it is shaped by practices and meta-cultures that characterize their transmission” (Dalbello, 1). As an adjunct of the New York Academy of Medicine, the library’s heritage, like many rare book collections, is primarily based in hegemonic culture. While the digital exhibits and cultural programming provided by NYAM showcase facets of their incredible collection, such a limited view and incomplete catalogue stifles access and intellectual comprehension.

 

References

Cloonan, M.V. (2001). “W(h)ither preservation?” The Library Quarterly 71(2): 231-42.

Dalbello, M. (2009). “Digital culture heritage: concepts, projects, and emerging constructions of heritage.” Proceedings of the Libraries in the Digital Age (LIDA) Conference. 25-30 May, 2009.

The New York Academy of Medicine — Library. Retrieved from http://www.nyam.org/library/.

Rosenzweig, R. (2003). “Scarcity or abundance? Preserving the past in a digital era.” The American Historical Review 108(3): 735-763.

Art and the AI Dream: Stelarc’s Avatar with No Organs

By lilym

The Australian performance artist Stelarc is a bit of an oddity in the contemporary art scene. Employing biocybernetic concepts and processes to his work, he is well-versed in creating hybridized forms that speak to ideas of human agency, informational interfaces, and digital capabilities in the modern world. His work primarily focuses on exploring “alternative anatomical architectures”[1] that touch on the psychological and physical limitations of the body and and technology. By means of video manipulation, surgical intervention, and robotic automation, the body becomes a medium of experimentation and an interface of interaction.

Stelarc conceives of his Prosthetic Head (Fig. 1) in such terms. The Head involves a digitally-rendered projection of the artist’s face programmed to interact with gallery visitors who talk to it via a central keyboard. Stelarc admits that he had envisioned the Head having speech and visual recognition capabilities, but technological limitations prevented these from being realized.[2]

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Fig. 1. Stelarc, Prosthetic Head, 2003.

Instead of referring to the Head as an “Autonomous Agent”, Stelarc refers to it as an “Embodied Conversational Agent.”[3] While at first glance the head would seem to be firmly rooted in AI tradition, Stelarc does not create (nor intend to create) an independent subject. He has instead set up the digital architecture of his agent through ALICE (Artificial Linguistic Internet Computer Entity) technology. Utilizing AIML (Artificial Intelligence Markup Language) the digitally-rendered bot formulates automatic responses based on user inputs.[4] Relying on the input of the user, Stelarc’s Head is less autonomous than it is reflective; as the artist himself has remarked, “the Prosthetic Head is only as intelligent as the person who is interrogating it.”[5]

The user’s textual interface with the Prosthetic Head is important here. The words typed out on the screen are only audible by the Head’s reiteration. Thinking in terms of Marcia Bates’s fundamental forms of information, this sets up an odd relational model. The user’s expressed information, following Bates, becomes embedded in the agent’s short-term database of information. Since the Head and the user are, after all, having a “conversation,” this information is reflected back onto the user, making our subjective experience of this information more apparent.[6] Marking an exterior focal interface, the reflection the user is faced with is something strange and alien yet, at the same time, familiar. According to Stelarc,

the human then is not something considered in-itself, but rather it it’s exteriority.[…]What is important is not essences and identities, but overlaps and interfaces. In this shift from essence to interface, we need to construct identity and awareness as external.[…]Self and subjectivity then is primarily an experience continuously being constructed externally, and remains open to change, inconsistency and contradiction. The subject does not define itself, but rather is defined by something outside of itself.[7]

The disembodied head becomes the prosthetic, digital embodiment of the user’s mind.

Stelarc attempts to find a new relational schema of the body and consciousness in this unfixed and undefined postmodern realm. He is essentially exploring the limits and potential of the human body, technology, and digital data. The Prosthetic Head is a bit different from previous projects, however, in that the physical body is completely eliminated, constructing this Head as a “body without organs.” Borrowing a concept from Gilles Deleuze, the body quite literally becomes a screen–a surface of random interplays and interactions that redefines the subject as more of a flowing process than a defined product.   In some ways, the user’s body becomes an extension (a prostheses) of the digital entity.

Stelarc takes a classical AI form that is “representational, rational, and disembodied”, but makes it function within a “reactive, situated, and embodied” subjectivity presupposed by Alternative AI.[8] The glaring deficiencies of the Head’s rational and automated aspects serves to devalue AI’s traditional hollow models of the human. However, in a point of departure from Sengers’s neatly laid out system, Stelarc downplays the importance of physical embodiment, therefore straying from some of postmodern AI’s conceptions that Sengers discusses.[9]

His artistic program as a whole revolves around the “post human.” Stelarc’s Prothesthetic Head explains that “the realm of the post human may not be in the realm of bodies and machines, but rather in the realm of autonomous and intelligent images, viral entities sustained in electronic media and the web.”[10] The human and mechanical body both perform within a context that constantly degrades them, and are therefore insufficient in expressing and performing essential functions. Gravity and friction break down the physical mechanisms of organic life, whereas electronic images and interfaces are not constrained by such physical processes.

The Prosthetic Head functions on the premise that human interaction is generally automated and unconscious. Its automated responses to user input may give the illusion of meaningful human-computer interaction, but this illusion is shattered in moments of disjunction, repetition, and outright weirdness. According to Julie Clark “Stelarc alludes to our self-controlled and regulated internal system as well as behavioral aspects that we remain unaware of which allows us to operate effectively as conscious beings, directed to the external environment.”[11] Discomfort and peculiarity in the interaction with this expressive image reminds the user that this “intelligent” agent is maybe not so intelligent after all.

Sengers mentions that “[o]ne of the dreams of AI is the construction of autonomous agents, independent artificial beings.[…]Autonomous agents would be more than useful machinery, they would be independent subjects.”[12] Although Stelarc’s project falls short of this dream (and this in itself problematizes the Classical AI that Sengers criticizes),  it does provide an interesting commentary on agency and identity in the context of omnipresent technology. It can even extend this line of thinking, showing the potential not for “living” machines, but for machines that reflect the “living,” mind back onto us, making us conscious of our unconscious modes of informational formation and transfer.

  1. Marco Donnarumma, “Fractal Flesh–Alternate Anatomical Architectures: Interview with Stelarc.” http://econtact.ca/14_2/donnarumma_stelarc.html.
  2. Stelarc, “Prosthetic Head: Intelligence, Awareness and Agency.” http://www.neme.org/252/prosthetic-head.
  3. Stelarc, “Prosthetic Head.” http://stelarc.org/?catID=20241.
  4. Artificial Intelligence Foundation, “An Introduction to A.L.I.C.E., the Alicebot engine, and AIML.” http://www.alicebot.org/about.html.
  5. Stelarc, “Prosthetic Head: Intelligence, Awareness and Agency.” http://www.neme.org/252/prosthetic-head.
  6. Marcia Bates, “Fundamental forms of information, ” in Journal of the American Society for Information and Technology 57(8): 2006, http://www.gseis.ucla.edu/faculty/bates/articles/NatRep_info_11m_050514.html.
  7. Stelarc, “Prosthetic Head.” http://stelarc.org/?catID=20241.
  8. Phoebe Sengers, “Practices for a Machine Culture: A Case Study of Integrating Cultural Theory and Artificial Intelligence” Surfaces VIII: 1999, 20.
  9. Ibid., 18.
  10. “Stelarc’s Prosthetic Head on the Subject of the Post Human,” YouTube video. Posted by Pyewacket Kazyanenko, December 7, 2008. http://www.youtube.com/watch?v=Nym8hfNI9Gg.
  11. Julie Clark, “Stelarc’s Prosthetic Head. ”http://www.ctheory.net/articles.aspx?id=491.
  12. Phoebe Sengers, “Practices for a Machine Culture: A Case Study of Integrating Cultural Theory and Artificial Intelligence” Surfaces VIII: 1999, 10.
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