Experimenting with The Asthma Files: Digital Ethnography, Animating Collaboration

Table of Contents ...... 1 Participants ...... 2 Abstract + Statement of Significance for the Humanities and Digital Innovation ...... 3 Narrative Overview ...... 5 introduction project content and structure digital aspects and innovation project users, curation and evaluation Background ...... 10 historial and anthropological studies of science and interdisciplinarity methods for cultural studies of the sciences developments in digitization and information processing History and Start-Up Results ...... 12 ethnographic origins vetting TAF layering in the philosophy of science, language and visualization to Plone or not to Plone? teaching in TAF enrolling humanities researchers digital development and innovation RPI seed funding Environmental Scan ...... 17 digital oral history archives of the sciences developments in digital anthropology exemplars in the digital humanities computational tools and social analysis Work Plan ...... 20 year 1 year 2 Staff and Rensselaer Context ...... 23 Final Product and Dissemination ...... 24 Sustainability Plan ...... 25 Data Management Plan ...... 27 Appendices ...... 29 Screenshots Shared Questions Public Presentations of The Asthma Files Comparative Analysis of Plone and Drupal CMS Broad Impact Through Cultivation of New Scientific Literacies

1 List of Participants Kim Fortun (Rensselaer Polytechnic Institute) Peter Fox (Rensselaer Polytechnic Institute) Mike Fortun (Rensselaer Polytechnic Institute) Daniel Price (consultant, University of Houston)

2 Experimenting with The Asthma Files: Digital Ethnography, Animating Collaboration

Abstract NEH funding is requested to support development of The Asthma Files, an experimental, digital ethnography project structured to support both collaboration among distributed, diversely focused researchers, and outreach to diverse audiences. While examining ways asthma is understood, cared for and governed in varied settings, it also examines how digital tools can be used to support new research practices, new ways of expressing ethnographic interpretation, and new ways of enrolling audiences in the process of ethnographic knowledge production. The Asthma Files is an experiment in ethnography, and in science, health and environmental communication. The project responds to dramatic increases in asthma incidence in the United States and globally in recent decades, and to wide acknowledgement that new forms of asthma knowledge are needed. The project aims to advance understanding of how knowledge about asthma and other complex conditions can be produced and configured, leveraging digital tools to enable new modes of collaboration among humanities researchers, and news ways of presenting and disseminating humanities research.

The Asthma Files project has been designed to address substantive humanities research questions: 1) How do people, organizations, and societies deal with complex conditions (such as the global asthma epidemic)? 2) What knowledge practices are relied on and innovated in dealing with complex conditions? 3) How is knowledge about complex conditions translated into programs of care and governance? 4) What are the socio-cultural dimensions and dynamics of complex conditions?

The Asthma Files have also been designed to address specific digital-methodology questions, applicable to different dimension/phases of the project: 1) How can information modeling and subsequent ontology development undergird and advance collaboration among humanities scholars? 2) How can data science, social network analysis and semantic web methodologies and technology help humanities scholars characterize distributed, possibly emergent expert communities (that are the subjects of humanities analysis)? 3) How can data science help humanities research characterize the knowledge practices of different kinds of experts, drawing out interdisciplinary practices and methodological innovation? 4) How can leading-edge digital techniques help humanities scholars produce analyses and modes of representation that help people understand and respond to complex conditions?

NEH funding will support 1) refined curation of current content, alongside refinement of the workflow pathways supported by The Asthma Files 2) further customization of the Plone platform and integration of semantic web capabilities 3) ethnographic experimentation with computational tools developed to support natural science researchers’ work with large data sets 4) development of new modes of presentation/publication, for collaborators, peer reviewers and broader audiences 5) circulation of the RPI digital humanities group within the larger digital humanities community.

The conceptualization of and plan for The Asthma Files has been presented to varied humanities audiences, and has been very enthusiastically received. The Asthma Files platform has strong potential to become a model digital platform for humanities research, customizable for varied humanities research groups.

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Significance for the humanities The Asthma Files project and digital platform supports collaboration among ethnographers, enables new forms of ethnographic interpretation and expression, and activates interdisciplinary, cross-cultural engagement with complex conditions (such as the global asthma epidemic). The project advances effort within the humanities to develop peer-reviewed, open access scholarship

Digital innovation The Asthma Files project will customize a Plone open source content management system, integrating semantic web capabilities, resulting in a flexible , theoretically informed digital platform that can be shared with other humanities research groups.

4 Experimenting with The Asthma Files: Digital Ethnography, Animating Collaboration

Narrative Overview Asthma incidence has increased dramatically in recent decades, making asthma one of the most common chronic diseases in the world. Scientists, physicians, and public health officials cannot explain these increasing rates. Indeed, much about asthma remains ambiguous, puzzling, and resistant to scientific and clinical resolution. Asthma sufferers and caregivers also struggle daily to make sense of asthma, trying to understand the rhythms of incidence, triggers, and effective modes of care and prevention. Researchers can connect asthma rates to social stratification, to increased pollen counts and ozone levels, to declining air quality, to the increased “hygiene” of modern life -- but all such connections are partial and inconsistent. Researchers from many different disciplines and perspectives, in many different geographic and organizational contexts, have tried to figure asthma out, but it remains elusive.

The Asthma Files (currently at http://xen007.tlc2.uh.edu:8081/asthmafiles) is an experimental, digital ethnography project that brings perspectives from these different groups together, cultivating synergism and comparative insight. The Asthma Files leverage digital tools to animate the comparative cultural perspective that the humanities, and particularly anthropology, are known to offer. In this way The Asthma Files are built around an early finding of the project: that asthma knowledge is fragmented, and there is little connection between people working on different factors in the complex matrix that produces asthma. Air pollution researchers describe themselves as unconnected to health researchers, for example. Many epidemiologists aren’t familiar with the air quality data sets that could be drawn into their studies. Geneticists have trouble relating to exposure scientists. Asthma parents describe themselves as insufficiently connected to asthma researchers. The Asthma Files respond to this disaggregation, aiming to animate new connections, conversations and collaborations.

The Asthma Files is structured to support both collaboration among distributed, diversely focused researchers, and outreach to diverse audiences. The Asthma Files is both an experiment in ethnography, and in science, health and environmental communication. The project aims to advance understanding of how knowledge about asthma and other complex conditions can be produced and configured, leveraging digital tools to enable new modes of scholarly collaboration within the humanities – and between the humanities and the sciences – and news ways of presenting and disseminating humanities research.

The Asthma Files project began in 2006 as a history and cultural anthropology of science project; from the outset, it was evident that innovative ethnographic method would be needed to sustain the project. Early on, we used a simple Powerpoint file to collate findings from different researchers, and to keep the structure of the project in view. The Powerpoint quickly became so large (partly because dense with images) that it became unstable, driving us to a wiki platform that also facilitated collaboration. During this stage of the project, its conceptualization crystallized, we began including student researchers, and we began presenting the project – both its content and its design – to varied audiences. The project was well received by scholars interested in the history and anthropology of science, public health and complex conditions writ large, by scholars interested in experimental ethnographic methods, and by scholars exploring new, open access modes of publishing.

NEH funding will support 1) refined curation of current content, alongside refinement of the workflow pathways supported by The Asthma Files; 2) further customization of the current Plone platform (which succeeded the wiki in in 2009) and integration of semantic web capabilities; 3) ethnographic experimentation that applies computational tools developed to support natural science researchers’ work with large data sets to humanities questions and approaches; 4) development of new modes of 5 presentation/publication, for collaborators, peer reviewers and broader audiences; 5) circulation of the RPI digital humanities group within the larger digital humanities community.

Through NEH funding, The Asthma Files can become a model digital platform supporting collaboration among distributed ethnographers working with and sharing heterogenous primary material to produce "files" that can be moved through in diverse ways, supporting different kinds of reading and readers - potentially making ethnographic writing and knowledge widely relevant and accessible. The platform will support new modes of ethnographic research, interpretation and writing, allowing ethnographers to grapple with complex phenomena with greater depth and comparative perspective. Customization of a Plone platform and integration of semantic web capabilities will smooth workflows, make it easier to share and compare material, and enable new kinds of ethnographic writing. The Asthma Files will be able to support a growing group of researchers, both those interested in extended involvement and those interested in more delimited engagement, to share asthma-related aspects of their broader, differently focused projects. The Asthma Files platform itself - freed of content - will also be shareable with other humanities research groups. project content and structure The Asthma Files is a digital archive of annotated texts, images, video, and audio files that illustrate multiple perspectives on asthma-- from the vantage points of affected people in different locales and communities, heath care providers, and scientists from many different disciplines. Images from scientific articles or advocacy organizations are an important path into the archive. The Asthma Files include images of lungs conceived of as a complex system, for example, accompanied by an annotation that explicates how this implicates understanding of asthma incidence, and response to asthma therapies. The Asthma Files also includes images of how genes express in allergic asthma; images of air pollution correlated to asthma hospitalization rates; and images that convey the extraordinary and socially uneven prevalence of asthma in different locales today. Explicated, one can see very different logics and scales of analysis in play. Physicians for Social Responsibility, for example, was an early voice linking escalating asthma rates to global warming. WeAct, an environmental justice organization in West Harlem, uses GIS maps to link asthma rates and incidence to local sources of diesel pollution. The Asthma Files brings these perspectives together, leveraging what historian of science Evelyn Keller calls “explanatory pluralism” – the idea that science, rather than seeking or needing one definitive answer, in fact thrives on multiple interpretations.1

Each file in The Asthma Files online archive is a brief, visually rich, densely hyperlinked digital presentation that conveys what a particular person, organization, technology, or discipline has said or done about asthma [see screenshots in Appendix 1] All files draw from a shared set of analytic questions [see Appendix 2] to enable comparative and cumulative perspective. Through qualitative interviews, textual analysis (of scientific papers, government reports, medical coverage, etc.) and a range of other techniques, project researchers examine what shapes how asthma is understood and treated. Together, their work stimulates understanding of asthma as a complex condition produced through interaction between biological, ecological, social, political-economic and cultural systems.

The Asthma Files are designed to bring together ethnographers, other researchers, artists, and a broader array of people concerned with asthma. Asthma files are organized into thematic drawers focused on how asthma has been accounted for, cared for, communicated, and experienced, on different sciences of asthma, and on different kinds of asthmatic spaces. The “asthmatic spaces” drawer, for example, includes sets of files that examine asthma patterns, experiences and regimes of care in different countries, cities, neighborhoods and communities. Houston and Manhattan are key foci, but plans are underway to

1Keller, Evelyn Fox, Making Sense of Life: Explaining Biological Development with Models, Metaphors, and Machines,Harvard University Press, 2002. 6 develop analyses of Delhi and other international cities as “asthmatic spaces” The “accounting for asthma” drawer gathers material pertaining to how different organizations – international, state, and local government agencies; pharmaceutical companies; patient advocacy groups – define asthma, track its prevalence, explain its occurrence, or justify approaches to its care. The "sciences of asthma" drawer is a compendium of different perspectives on the etiology of asthma, examining what different people and organizations say are the causes, mechanisms, and triggers of asthma. It includes files on scientists from numerous disciplines – geneticists, immunologists, and epidemiologists, for example – files on environmental activists, and files on different kinds of health care providers, including parents. In the future, we plan to create files that examine how asthma is understood in diverse healing traditions such as ayurveda, homeopathy, Chinese medicine, urani, and Native American practices.

This file drawer structure is expandable, and it can stand, structurally, even without content. In other words: there is space for research materials, analysis and collaborators our group doesn’t yet have – someone who would develop files on Tehran as an asthmatic space, for example, or one who would focus more on clinical engagements than does anyone currently in the group. The file drawer structure also lets the project evolve and transform, without falling apart. We can add new themes – new drawers – and we can let drawers sit unattended, as our attention is directed to new issues. But the material remains archived, in a format that is easy to return to, to add new layers of analysis, to add links to new asthma files, to disrupt with new interpretive explorations. This archival sensibility – that admits the way analytic techniques change, and the value of re-analysis of old data – is something we’ve observed in the environmental health sciences and indeed in the contemporary sciences broadly, and The Asthma Files builds on this phenomenon.

The file drawer structure of The Asthma Files also contributes to its potential as a shell humanities platform. On can imagine many other, diversely focused projects that could be segmented and sustained in this way. Other projects could also make use of the structures we’ve established to continually update our sense of the societal rationale for the project, and our sense of how theoretical insight from the humanities should be built in.

Our substantive logics are a continually expanding and evolving set of files that draw out reasons the project is important. Substantive logics for The Asthma Files include dramatically increasing incidence of asthma worldwide, and the overwhelming tendency to locate care and cure in the biomedicalized inhaler- compliant individual – rather than in regulation that would improve air quality, for example. Another substantive logic is drawn from an early finding of the project: that there is little connection between people working on different factors in the matrix that produces asthma. The Asthma Files are motivated by, and respond to, this disassemblage.

Our substantive logics thus motivate us, and allow ethnography to “loop:” what we learn in the project about the discursive tendencies, gaps and risks around asthma are fed back into the project, making it a representation of asthma spaces, and a critical response to them.2

Our design logics do a different kind of work. These logics are drawn from social, literary and aesthetic theory. Curating files of design logics allows theoretical ideas to animate without overdetermining The Asthma Files. One of our design logics is drawn from Derridean historian of biology Hans-Joerg Rheinberger’s conception of how experimental systems work in the sciences, as a play between limits and openness; another is drawn from James Clifford’s’ writing about how juxtaposition works in surrealist art, and in ethnography. Yet another is drawn from Gregory Bateson's description of what happens when

2 Kim Fortun, “Ethnography of Late Industrialism,” address delivered at Duke University Symposium on the 25th Anniversary of James Clifford’s and George Marcus’s Writing Culture, October 2011. 7 different scales or orders of communication collide, sometimes producing pathology, sometimes creativity.3

The structure of The Asthma Files is clear and easy to visualize [See Appendix 1]. It is meant to create a space for researchers to work, individually and collectively, in a format that quickly moves them to a point – the staccato articulation of research in a “file” – at which they can share their analysis and findings with other researchers, as well as other kinds of users.

The Asthma Files are designed to multiply responses to important humanities research questions: 1) How do people, organizations, and societies deal with complex conditions (such as the global asthma epidemic)? 2) What knowledge practices are relied on and experimentally extended to deal with complex conditions? 3) How is knowledge about complex conditions translated into programs of care and governance? 4) What are the socio-cultural dimensions and dynamics of complex conditions? digital aspects and innovation The Asthma Files operate on an open source (Plone) platform that supports both the research process, and rapid, creative sharing of research results. The Plone platform serves as a portal to a suite of common open source tools useful in humanities research, which – if well coordinated – can facilitate collaboration amongst humanities researchers. In the proposed work, new semantic web capabilities will also be integrated. The Asthma Files platform will also serve as a portal to new, leading-edge digital tools developed in and for scientific fields, with unexplored potential use in the humanities.

The continually expanding set of common tools built into The Asthma Files platform are selected, and sometimes customized, to facilitate individual research within a collective frame, such that the individual researcher is able to use material and insight developed by other researchers as their own research progresses, sharing their own research as it develops. The Asthma Files tools now include Zotero, Google docs, and a simile-widgets timeline. These tools will become better integrated and more useful with semantic encodings developed for science applications, including smart faceted inventory search and discovery.4

The suite of open source tools that TAF pulls together, directing without overly constraining the workflow of a researcher, is part of its digital innovation. This workflow will allow TAF researchers to store, access and make use of materials in a content repository that includes images, audio and video interviews, and a wide range of scientific publications, tagged (current implementation) and semantically- annotated (proposed) to allow searches and sorting. This functionality takes advantage of Plone’s notable security functions, especially important when researchers need to archive (often interview) material that needs to be shared in strictly regulated ways (often per IRB approved consent forms). Further, this supports sharing of primary material among ethnographers, which over the last fifty years has become quite rare, despite the development of supporting technology in the same period.

3 Hans-Joerg Rheinberger, “Experimental Systems, Graphematic Spaces,” in Inscribing Science: Scientific Texts and the Materiality of Communication, ed. Timothy Lenoir (Stanford, 1998); James Clifford, “On Ethnographic Surrealism,” Comparative Studies in Society and History 23:4(1981):539-564; Gregory Bateson, “Toward a Theory of Schizophrenia” (1956), in Steps to an Ecology of Mind (University of Chicago Press, 2000). 4 Eric Rozell, “Semantic Annotation of Deep-Web Resources,” Tetherless World Constellation, RPI, Troy, New York 12180; http://tw.rpi.edu/wiki.tw/images/e/e6/ETST_2011_Rozell_Eric_A1.doc

8 Through the work proposed here (in year 2), we also will implement capacity to utilize large data sets, information modeling, social network analysis, and semantic web capabilities to address humanities questions in non-traditional ways. Our work will extend examination and interpretation of 1) the shape and dynamics of distributed communities of practice (in this case, people concerned with asthma) and 2) the information practices and culture of different people (in this case, asthma researchers in different disciplines). This will produce new ethnographic material and interpretation, while advancing methodological understanding of how digital techniques can be used in humanities research.

Yet another digital innovation is in the way The Asthma Files uses digital capacity to speed the movement from research through analysis to engagement with users. On one hand, we want faster movement to “publication.” On the other hand, we want a different kind of publication entirely, a kind of publication that operates as a platform for ethnographic encounters that provide critical and reflexive responses. The Asthma Files will be a place where people move through material in different ways to think through a complex condition, actively leveraging comparative insight.

The work proposed here will allow us to ask specific digital-methodology questions, applicable to different dimension/phases of the project: 1) How can information modeling and subsequent ontology development undergird and advance collaboration among humanities scholars? [applicable to platform design to support humanities collaboration] 2) How can data science, social network analysis and semantic web methodologies and technology help humanities scholars characterize distributed, possibly emergent expert communities (that are the subjects of humanities analysis)? [applicable to ethnographic content production/analysis]. 3) How can data science help humanities research characterize the knowledge practices of different kinds of experts, drawing out interdisciplinary practices and methodological innovation? [also applicable to ethnographic content production/analysis]. 4) How can leading-edge digital techniques help humanities scholars produce analyses and modes of representation that help people understand and respond to complex conditions? [applicable to expression of research results and “publication” to varied audiences.] project users, curation, and evaluation Our current focus is on development of a collaborative research space for humanities scholars. Over the last few years, over twenty-five researchers – including undergraduate and graduate students at RPI – have been involved in The Asthma Files. Many additional researchers have voiced interest and taken initiative to participate. In May 2012, for example, the Center for Persian Studies and Culture at the University of California-Irvine, has invited us to lead a workshop at which we will co-develop a set of files focused on Tehran as an asthmatic space.

As the project matures, there will also be active outreach to diverse user groups/audiences, including scientists, health care providers, journalists, policy makers and people with asthma, including children. A key goal of the asthma files is to involve people in the ethnographic research process, such that ethnography becomes an ever-evolving space of deliberation and collective evaluation of complex conditions.

The Asthma Files thus has many potential users: • Ethnographers and other cultural analysts who want to work with materials in The Asthma Files repository, contribute new materials, or create new asthma files. • Peer reviewers who have been invited to comment on a particular asthma files, on the ethnographic research design, or on the design of The Asthma Files platform. • People concerned about asthma, as health care professionals, as scientists, journalists, etc. • Humanities researchers interested in technology transfer – use of the shell of The Asthma Files platform for their own projects.

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The Asthma Files are currently curated by an “installation crew” that includes Dan Price (University of Houston), Mike Fortun, Kim Fortun, Alison Kenner, Erik Bigras and Brandon Costelloe-Kuehn (all at Rensselaer).

In developing The Asthma Files, we have been oriented by guidelines for evaluating digital humanities projects developed by the Center for Digital Research in the Humanities at the University of Nebraska. These guidelines encourage the following, all of which are already achieved or are concretely planned in The Asthma Files project (as described in following sections of this proposal): compatibility between design, content, and medium; technical innovation and sophistication; use of internationally accepted encoding standards (e.g., XML, TEI guidelines); design for long-term viability and accessibility; involvement of experts in design and implementation; collaboration with or connections to related digital research projects at other institutions; linkage to a site from other sites; citation of the project or associated research; pedagogical application and assessment; peer review of digital research sites and tools; grant funding received; conference presentations; print publications resulting from the digital research.

Background historical and anthropological studies of science and interdisciplinarity Anthropological ethnography has long been recognized as a methodology of choice for understanding how people think and act in their natural settings, influenced by the history of ideas in their particular location, by economic forces, and by nested forms of social organization (from the household to the national, regional and global level). The anthropology of science, a relatively new subfield of cultural anthropology, has extended these traditional ethnographic techniques and applied them to understanding “laboratory life.”5 A well established finding in the history and anthropology of science is that scientific disciplines and scientific communities in different national contexts are different, not only in what they focus on but also in the way they conceptualize problems, use technology, organize their labs, and train new members of the community. As Sharon Traweek argues, there are many scientific cultures, and effective collaboration across communities and disciplines (and often even within disciplines, as between experimentalists and theorists in physics) depends on active recognition of this. Traweek has developed a general theory of the way scientific breakthroughs occur on “faultlines” where different disciplines come together to work out new concepts and study designs that build on and transcend what any discipline could accomplish alone.6 Historian of science Peter Galison has developed a related concept, the “trading zone,” to explain how scientists from different fields are able to collaborate. According to Galison, groups can agree on rules governing how they should work together even as they maintain very different ways of thinking about the phenomena and tools they are working with, and perhaps even about the purpose of collaboration.7

5 Karin Knorr-Cetina, “Laboratory Studies: The Cultural Approach to the Study of Science,” pp. 140-166 in Sheila Jasanoff et al (eds.) Handbook of Science and Technology Studies (Sage, 1995); Bruno Latour, Science in Action: How to Follow Scientists and Engineers through Society (Harvard University Press, 1987); Sharon Traweek, Beamtimes and Lifetimes: The World of High Energy Physicists (Harvard University Press, 1989). 6 Sharon Traweek, “Border Crossings: Narrative Strategies in Science Studies and Among Physicists in Tsukuba Science City, Japan,” in Andrew Pickering (ed.) Science as Practise and Culture (University of Chicago Press, 1992). 7 Peter Galison, Image & logic: A material culture of microphysics (University of Chicago Press,1997).

10 Galison’s conception of “trading zones” has circulated widely; trading zones have been called for in the management of complex environmental systems like the Everglades, in the development of nanotechnology, and in the development of computer science education.8 In spring 2006, a NSF- sponsored conference focused on “Trading Zones, Interactional Expertise and Interdisciplinary Collaboration.” This conference extended understanding of the way social scientists, and particularly anthropologists, can facilitate collaboration amongst diverse scientific communities -- though feedback that makes cultural differences visible, sensible and productive. These ideas from the history and anthropology of science set the stage for The Asthma Files. methods for cultural studies of the sciences The science haves long been studied by historians to understand how scientific knowledge develops, and how scientific practices and modes of evaluation have shifted over time and in social context. The materials traditionally used for these studies were textual archives. In the last 25 years, cultural studies of the sciences have accelerated and diversified, drawing in humanities scholars from across the disciplines. The anthropology of science, for example, was almost unheard of 25 years ago, yet is now regarded as one of the most methodologically innovative and theoretically productive arenas of the field of science studies. As in other disciplines, methodological innovation in the anthropology of science stems from the special demands that arise from try trying to understand the sciences from a humanities perspective. Traditional methods – textual analysis and oral histories, for example – remain critical, but are now integrated into more complex study designs that involve analysis of and work with the many data sets that scientists produce, use, and parlay into the public domain.

Historian Michael Fortun’s study of 20th century developments in human genetics, for example, began with oral histories of scientists involved in the development of the Human Genome Project in the 1980s. Today, interviews with scientists remain central to his work, but so does analysis of how scientists construct and use large data sets to define “race,” or “the environment” in gene-environment interaction studies.9 Kim Fortun, a cultural anthropologist, also began studying the sciences through oral history interviews and participant observation. Focused on the environmental sciences, she has become interested in how different kinds of data sets – particularly pollution and health data sets – are brought together to produce new insight on environmental health risks.10

8 B. Fuller, Trading Zones: Cooperating and Still Disagreeing on What Really Matters. Cambridge: Department of Urban Studies and Planning, Massachusetts Institute of Technology; 2005; Michael Gorman, Trading Zones and Interactional Expertise: Creating New Kinds of Collaboration (MIT Press, 2010. Gorman ME, Groves JF, Catalano RK. Societal Dimensions of Nanotechnology. IEEE Technology & Society Magazine. 2004;29(4):55-62; S. Fincher and M. Petre, Computer science education research. (Taylor & Francis, 2004). 9 See e.g. Mike Fortun, “Genes In Our kNot,” Handbook of Genetics and Society: Mapping the New Genomic Era, Paul Atkinson et al., eds. (Routledge, 2009); Promising Genomics: Iceland and DeCODE Genetics in a World of Speculation (University of California Press, 2008); “Scientific Imaginaries and Ethical Plateaus in Contemporary U.S. Toxicology” (with Kim Fortun), American Anthropologist 107(1):43-54; “The Use of Race Variables in Genetic Studies of Complex Traits and the Goal of Reducing Health Disparities” (with Evelynn Hammonds, Patricia King, Caryn Lerman, Rayna Rapp, Alexandra Shields, and Patrick Sullivan), American Psychologist 60 (1):77-103. 10 See e.g. Kim Fortun, “From Bhopal to the Informating of Environmental Health: Risk Communication in Historical Perspective,” OSIRIS 19/1 (Special Issue on “Landscapes of Exposure: Knowledge and Illness in Modern Environments,” ed. Gregg Mitman et al., 2004); “Environmental Right-To-Know and the Transmutations of Law” in Catastrophe: Law, Politics and the Humanitarian Impulse, ed. Austin Sarat (University of Massachusetts Press, 2009); “Ethnography In/Of/As Open Systems,” Reviews in 11 developments in digital information processing A number of recent developments have laid fertile ground for new means of digital humanities innovation. In recent years, for example, the Resource Description Framework (RDF) language, tool and application support has become widely adopted for information representation in various domains -- e.g., biotechnology (UniProt), government data (the data.gov project), scholarly resources (DBLP), web resources (DBPedia), connections between people (FOAF), communities (SIOC), projects (DOAP), conferences (SWRC) and many more. This adoption of RDF as linked data has in turn led to a dramatic increase in the RDF data available on the web, and available for scholarly use (Bizer et al 2011). Methodologies for enriching the semantic capabilities of a variety of eScience applications have also improved, as have methodologies and tools for semantic social network analysis. Critical for this project are developments in semantic web capabilities. Such developments have been put into practice for the TWC in a prior activity (Patton et al. in press) which semantically-enabled tw.rpi.edu in a Drupal content management system (NB. The comparison between Plone and Drupal later in this proposal). The original use cases and design document11 and the developed ontologies12 indicate substantial advances on the use of semantic technology to support scientific (primarily computer science and informatics) collaboration.

With the use of traditional off-the-shelf content management systems, human-managed web pages referencing a common entity often contain out of date information or point to resources that have been moved to streamline a different research project/ workflow as it evolves. This leads to lost productivity due to the large overhead of either curating the content more diligently or through time spent searching for missing or incorrect data. The complexity of research problems in all fields, but increasingly so in the humanities, continues to grow, and so does the need for research groups at different institutions to work together to solve those problems. Increased collaboration via web-based applications with more researcher specific views of integrated content now allow better resource management, dramatically enhancing ways distributed researchers can work together.

In a world where the Web accelerates researchers’ abilities to disseminate knowledge, the inescapable data and metadata management for interdependent projects and milestones can be difficult for even a small team of individuals to handle before pages documenting those links become out of date or disorganized due to the wealth of information. The Asthma Files grew out of a need to manage such content and collaborations but has to date been limited by the technical capabilities of the underlying platform, as well as lack of collaboration with computer and information scientists with the advanced semantic web and content management experience.

History and Start-Up Results ethnographic origins (2006 - ongoing) Mike Fortun and Kim Fortun first envisioned The Asthma Files while participating in an NIH-funded collaborative effort (led by health policy researcher Alexandra Shields, director of the Center for Genetics, Health Disparities and Vulnerable Populations at Harvard) to develop gene-environment interaction research responsive to health disparities, using asthma as a case study. A key goal was to identify genetic study designs that incorporated sound environmental indicators. A June 2006 workshop at Harvard brought together diverse researchers to consider possibilities and challenges. At this workshop, it was clear that geneticists, epidemiologists and environmental scientists had had limited prior contact, and worked with very different kinds of data and conceptual schemes. Further, there was a tendency to think

Anthropology 32/2 (2003): p171-190; Advocacy After Bhopal: Environmentalism, Disaster, New Global Orders (University of Chicago Press, 2001).

11 http://tw.rpi.edu/web/project/TWWebsite/broaddesign 12 https://scm.escience.rpi.edu/svn/public/ontologies/TW/trunk/ 12 that the group needed to come to consensus to work effectively together. As anthropologists, the Fortuns were interested in different ways of thinking about transdisciplinary collaboration, and in ways cultural and conceptual differences across the sciences could be put to advantage in efforts to deal with complex conditions such as asthma. They thus became interested in how explanatory pluralism in the sciences can be highlighted, deliberated and leveraged – through experimental ethnography.

The Fortuns thus began developing ethnographic material that drew out different ways of thinking about asthma. Mike Fortun focused on geneticists and the then just emerging work to understand gene- environment interaction. Kim Fortun focused on ways people – researchers, environmental justice activists, school nurses – thought about the relation between air quality and asthma. As their interest was in juxtaposition of different thought styles and knowledge forms, they also drew other researchers in to the project. Brandon Costelloe-Kuehn, a Rensselaer Ph.D. student, began exploring ways asthma was communicated – in educational materials, pharmaceutical advertising, etc. Alison Kenner, another Rensselaer Ph.D. student, began exploring different ways of caring for asthma – through public health programs, alternative medicine, and urban air quality improvement programs. Nick Shapiro, an Oxford Ph.D. student (in anthropology) joined the project to share his research on asthma in New Orleans after Hurricane Katrina, particularly among those housed in FEMA trailers. As a group, we collected strong clusters of interviews in Houston, detailing efforts there to improve air quality, and at the U.S. EPA’s Office of Research and Development, where we interviewed scientists involved in air quality modelling, urban sustainability assessment and other research intended to direct environmental regulation. Our second EPA trip (in fall 2011) included two additional Rensselaer Ph.D. students, Kirk Jalbert and Erik Bigras, both in the planning stage of dissertation projects.

It was during this stage that we developed the “file” as the genre we would use to present our material and interpretations, aiming for what we called “staccato” articulations that could be readily juxtaposed, making explanatory pluralism visible. At the outset, we compiled these files in a simple Powerpoint file. The ppt served us well as the project design crystallized, but quickly because very large and unstable. We also became increasingly interested in developing a workspace for ethnographic collaboration, not just a means of presentation. We thus moved to a wiki platform and began trying to craft sustainable, collaborative workflows.

Ethnographic research and content development for The Asthma Files has been partly supported by Kim Fortun’s NSF Grant, “Strategizing Transdisciplinarity: From Exposure Assessment to Exposure Science” (August 2007-February 2012)(NSF# 0724684). Our research trip to Houston was funded by the University of Houston. vetting The Asthma Files and enrolling new researchers (2008 - ongoing) The Fortuns began presenting their conceptualization of, plans for, and work from The Asthma Files in 2008, to audiences interested in the history and anthropology of science (the content of the project) and also to audiences interested in experimental ethnography (the design and methodologies of the project) and in the project’s open source and access commitment. All three audiences have been remarkably receptive, and have continued to offer feedback and encouragement. A list of occasions when we presented the project is included as Appendix 4.

Presentation of The Asthma Files has generated remarkable interest in participation – more than we have been able to keep up with. Technical refinements resulting from the work proposed here will help with this, enabling new collaborators to operate more independently while still engaged with other researchers and the project as a whole. We expect to be notably more ready for new researchers by the end of summer 2012, taking advantage of resources we were recently awarded through Rensselaer’s seed funding program. During spring and summer 2012, we will also start running a parallel Plone platform, to support an Ethnography of Sustainability Science and Engineering Research Group, to begin testing

13 potential for sharing the entire platform built for The Asthma Files. By the end of the work proposed here, we plan to be ready to share the platform as a whole – freed of content—for use by other humanities research groups. layering in the philosophy of science, language and visualization (2009 – ongoing) In 2009, philosopher Dan Price joined TAF’s “installation crew,” motivated by questions in the philosophy of science about how knowledge is produced, or left undone, and is overdetermined by dominant (Kantian and Hegelian) ideas about thought and meaning. Price’s mathematical sensibilities and his Python programming skills helped advance our thinking about the kind of knowledge production a digital platform for The Asthma Files needed to support, and with his help the project received technical support from the Texas Learning and Computation Center (TLC2) at the University of Houston. (http://www.tlc2.uh.edu/) to move to an open source Plone content management system (CMS).

Price also led a group of humanities researchers developing a digital analysis tool called Vwire, for making, evaluating, and comparing visual arguments based on rearrangements of images in a database. Vwire subsequently received an NEH start-up grant in 2011, and with Price’s continued collaboration we plan to investigate its uses and possible extensions in TAF. (Price NEH #HD-51400-11) to Plone or not to Plone? (2009 - ongoing) Our move from a wiki to a (open source) Plone CMS was motivated by its potential for enhanced security, more nuanced workflow pathways, and more intentional relationality amongst files and primary material. In the last year, we have re-evaluated our CMS choice and after careful consideration and comparison, we have decided to remain with Plone. A chart in Appendix 3 summarizes how we compared Plone to Drupal. Erik Bigras (Ph.D. student in our group, with a background in both anthropology and computer science) provided this narrative report:

• Creating pages in Drupal is very easy; its “block” structure makes it easy to configure the look of a page, and allows users to simply move objects around by allocating them to pre-defined spaces on the page.. With Plone, visual modifications often require modifying CSS style sheets. • Installing Drupal is easier than installing Plone. Drupal only requires Apache and PHP, which most servers already offer. Plone requires a VPS, which inserts a layer of required administration and expertise that is absent from Drupal. So on these two points, Drupal would be a better platform for anyone trying to display information on a simple site. • However, part of the goal of The Asthma Files is to create a work space through which collaborators can create, analyze, and share their materials. With this goal in mind, Plone becomes a more interesting platform. • Drupal gains much flexibility through the use of user-created add-ons – essential because Drupal itself is rather stripped bare. For example, media and file management is accomplished through add- ons or through FTP access to the server. Plone, however, offers a way to manipulate and access files within the platform directly upon installation. Plone mimics an online file management system in which users can manipulate the material. Because one goal of The Asthma Files is to explore new paths for scientific collaboration, having all the functionality pre-installed in Plone greatly reduces the amount of work needed for collaborators to be able to have a functioning workspace. There is no need to search for add-ons, and make sure that everyone has compatible ones, because everything is included already in Plone. • Accessibility: Plone is compliant with section 508 of the Americans with Disabilities Act; Drupal is not. While it is possible to ensure that Drupal sites are fully accessible to users identified as 'disabled,' Plone makes such accessibility issues easier because it already includes all the necessary parameters that must be fulfilled.

14 • Security also is an important issue for The Asthma Files because of the IRB protected materials that are stored in and shared through the platform. As a platform, Plone has issued less security advisories than Drupal, which makes Plone a front-runner in terms of security. However, the way in which Plone and Drupal handle secure access to files also is different. Drupal's security mainly espouses a philosophy of anonymity; something on Drupal is secure if no one knows that it is there. For example, Drupal appears to differentiate between public (unsecured) and private (secured) pages. Public pages are those pages available for everyone to see. Private pages, on the other hand, are available in a different folder on the server, and are only available if 1) one knows the URL to the page, or 2) one has FTP access to the server. Plone, on the other hand, allows individual Plone folders to be password-protected so that the material inside can only be accessed by the users with the appropriate permissions. Plone security is not contingent on the existence of a space beyond the platform. It is created within the platform. • How Drupal handles security makes it difficult to share IRB protected material through the platform. Because Drupal creates a single private space in which all protected materials are stored, anyone with access to the folder can access all the materials. So if the audio files from interlocutor A and interlocutor B are both in the private space, interlocutor A will potentially be able to see interlocutor B's files when he or she goes to access his or her materials for review. With Plone, this is impossible unless interlocutor A also knows the password to interlocutor B's folder. Also, because Plone's security is handled at the level of the platform, interlocutors are not required to install any kinds of software on their own system (such as FTP clients). • Plone offers more flexible opportunities when it comes to work flow. For example, one aspect of The Asthma Files is thinking about the ways in which peer-review can be done for the kind of work being presented on The Asthma Files. Because Drupal primarily is a display platform, it incorporates only two options when it comes to work flow: a page can either be in draft form, or it can be published. Also, Drupal does not incorporate conceptualizations of the ways in which users can go from one to the other. Therefore, for social science and humanities projects that can exist in states between draft and publication, Drupal requires users to step outside of the platform in order to accommodate the review process. However, Plone includes review modes upon install and also various options to facilitate the transition between one state to another. Also, Plone includes upon install more user categories (each with a different level of access to the platform) than Drupal. While these user categories can be created in Drupal, this requires users to manually add them through the Drupal administrator interface. • At the structural level, Drupal conceptualized all elements as nodes that have an equal value. As such, Drupal's structure eschews hierarchy. Elements are given a place on the platform by being relationally connected to other elements. This means that elements are only accessible if they are connected to other elements. Orphan elements that are not relationally associated to other elements might as well not exist, and therefore risk being lost. However, this method of place assignation risks limiting the ways in which the platform can be traveled: unless the page's specific URL is known, the page can only be accessed through the pages to which it is connected. Plone, on the other hand, includes folder structures within which elements can reside without being connected to other elements. In effect, Plone does not handle relationships at the level of the file, but at the level of the system. One aspect of The Asthma Files is its attempt to understand the ways in which information navigates a network through collaborative practices. The fact that Plone takes a systemic approach to space creation becomes important because individual files cannot be created independently from other files and then simply inserted into the network. Plone requires that its users think of information flow as the elements are being created. • Finally, Drupal lacks Plone's collection structure. In Drupal, elements exist independently from one another. However, Plone allows elements to be joined in ways that create new elements. In this way, Plone does not create diversity through addition but through juxtaposition. In Drupal, the overall goal of users is to create new elements than can then be added to the existing network of pages. In Plone,

15 however, the overall goal of users is to bring pages together through juxtaposition in order to create a sense of play where the newness is not in the information being displayed but in the ways in which the juxtapositions were created in the first place. teaching in The Asthma Files (2010 – ongoing) An important dimension of The Asthma Files is the way it draws students at all levels into humanities research, alongside more senior researchers. Students can make use of and contribute to The Asthma Files’ repository, and can make asthma files, guided by our shared research questions. In spring 2010, we ran undergraduate research seminars associated with The Asthma Files at both Rensselaer (taught by Kim Fortun) and at in the University of Houston Honors College (taught by Dan Price). One of the Rensselaer undergraduates (Michelle Cullum) has sustained her research for The Asthma Files since then, supplemented by asthma-related summer internships, as a way to prepare for graduate school in public health. In spring 2011, Kim Fortun taught a PhD seminar that brought 12 students into the project for the semester. In spring 2011, two high school students also participated in the project. A new high school intern has joined us for spring 2012, with plans to develop files on Tokyo (her home) as an asthmatic space. work with Scalar and Vectors (2011) During summer 2011, two researchers deeply involved in The Asthma Files – Ph.D. students Nick Shapiro and Brandon Costelloe Kuehn – participated in The Vectors-CTS Summer 2011 Institute on the Digital Approaches to American Studies, part of NEH’s Institute for Advanced Topics in the Digital Humanities initiative. Their project was titled “Networking Asthmatic Spaces: Collaborative Cartographies of the American FEMA Trailer Diaspora.” Their project, cast as part of the ongoing effort of The Asthma Files, was to create a multimedia, oral history enriched map of how asthma-inducing temporary housing units, originally built to accommodate Gulf Coast residents that were displaced by the hurricanes of 2005, have been resold across the United States, in tandem with a widening foreclosure crisis. The project aimed to enhance users' capacity to 1) visualize connections between environmental, public health and economic crises, 2) move across scales, engaging material that situates them inside the trailers and the lives of residents, then zooming out to see how hazards at the local level are distributed nationally, 3) understand how scientifically-engaged media can generate new perspectives on complex problems.

Shapiro and Costelloe-Keuhn’s experience with Scalar and Vectors has deeply influenced the way we think about The Asthma Files. Both are exemplary projects that we will continue to monitor for fresh ideas. Shapiro and Costelloe-Kuehn’s involvement with Scalar and Vectors also exemplifies the kind of activity that we hope to sustain in The Asthma Files, supporting collaboration within the project, but also movement beyond into new collaborations. This work has been featured on local media, and was on Harry Shearer's internationally syndicated NPR Worldwide radio show. digital development and experimentation In recent years, RPI’s Tetherless World Constellation (TWC) has attained noteworthy success researching and applying semantic descriptions of complex project entities using both the Resource Description Framework (RDF; Erickson et al. 2011) noted above and the Ontology Web Language (OWL) to diverse data contents.13 This semantic web enablement allows digital content to be queried, reasoned over, and

13 Peter Fox, Deborah McGuinness, Luca Cinquini, Patrick West, Jose Garcia, and James Benedict, “Development of Solar-Terrestrial Ontologies in support of Semantic Data Frameworks, Computers and Geosciences, special issue on Geoscience Knowledge Representation for Cyberinfrastructure. 35, #4 (2009), 724-738.

16 transformed into a variety of presentation environments (web pages, content management, etc.). The end goal is in facilitating efficient and effective use of large archives, data sharing and data integration.

Co-I Fox’s effort thus far has focused on uses within the physical and environmental sciences, working – for example – with NASA and their repository of satellite remote sensing imagery as well as NOAA with diverse environmental data. Fox has also led efforts at Rensselaer to extend TWC’s capabilities to the humanities. Toward this, Fox was part of a series of spring 2011 meetings in Rensselaer’s School of Humanities, Arts and Social Sciences, resulting in extensive discussion with Mike Fortun and Kim Fortun about The Asthma Files. In this proposal, we posit that the capabilities developed by the Tetherless World are mature enough to be extended to the humanities, and that there is clear potential, and a strong basis for collaboration.

Unique in this collaboration between computer science and the humanities is shared concern with changing modes of scientific practice and representation. The collaboration is thus about much more than application of computational techniques to the humanities. A core concern of The Asthma Files project, and of the history and anthropology of science more generally, is with the ways scientists actually work and develop ideas and findings. Though from a different perspective, this is also a core concern of Peter Fox and the Tetherless World Constellation. Writing in Science magazine in February 2011 (“Changing the Equation on Scientific Data Visualization”), for example, Fox and colleague Jim Hendler challenge scientists to think about, and use visualization techniques in new ways, taking better advantage of the way visualization can be used in the research process, and not merely as a means to represent final results. Shared interest in changing modes of scientific practice and representation thus provides unusual depth to the proposed digital humanities collaboration.

To date, the Rensselaer’s Tetherless World Constellation semantic content and data framework activity has been funded internally from Constellation funds and from the National Science Foundation’s Office of Cyberinfrastructure’s Strategic Technology for CyberInfrastructure-funded – Semantic eScience Framework (PI: Peter Fox).

Rensselaer seed funding In fall 2011, The Asthma Files project was awarded Rensselaer seed funding of $18,000 to support development of its digital platform, and collaboration with Rensselaer’s Tetherless World Constellation. In spring and summer 2012, The Asthma Files digital platform will be built out such that: • Material now distributed across various test platforms is consolidated and appropriately curated. (http://xen007.tlc2.uh.edu:8081/asthmafiles, http://hon.tlc2.uh.edu:8081/TestTAF/front-page) • It is easier for users to contribute, visualize, search for and make use of both primary and secondary material archived in the platform’s repository. • Its file drawer structure functions better, and is easier to visualize and move through. • The templates built to direct and animate comparative, collaborative analysis function better and more dynamically. • It reflects best, most creative practice in the digital humanities, gleaned from an “environmental scan” of other digital humanities projects.

Environmental Scan There are a number of digital humanities projects that do some elements of what The Asthma Files does, but none of them embodies the full scope of TAF: production and archiving of primary data for collaborative humanities research, including video interviews with scientists and others; tools for collaborative commentary and peer review of scholarly contributions; multiple defined pathways for delivering a more complex, humanities-informed understanding of scientists and scientific researchers to broader, less expert audiences.

17 digital oral history archives of the sciences The list of websites devoted to various diseases and their histories maintained by the American Association for the History of Medicine (http://www.mla-hhss.org/histdis.htm) contains no entries for asthma or other respiratory conditions. While there are many websites devoted to the history of conditions such as cancer, diabetes, epilepsy, tuberculosis, and so on, almost all of these present a very delimited narrative, few links to primary research or archival materials, and little in the way of cross-cultural perspective or interpretive humanities analysis. The best of these are done by the Office of History at the National Institutes of Health (http://history.nih.gov/museum/virtual.html), but these nevertheless deliver a static, pre-digested and largely internalist view of health and health research. None of these sites have the built-in mechanisms for growth, change, and continued addition of new humanities perspectives that The Asthma Files research community provides.

A similar search through the more than 5,000 history of science and technology websites catalogued by the excellent ECHO (Exploring and Collecting History On-Line; http://echo.gmu.edu/) resource affiliated with the Center for History and New Media (http://chnm.gmu.edu/) turns up nothing on asthma or asthma research. (One minor exception is The Inhalatorium [http://inhalatorium.com/page2.html], a small on-line collection of advertisements, inhaler images, and similar kinds of curiosities; no analysis of any kind if offered.) There are of course many excellent digital humanities projects related to the history of sciences and medicine broadly, such as the Darwin On-Line project (http://darwin-online.org.uk/) or the Newton Project (http://www.newtonproject.sussex.ac.uk/prism.php?id=1); the latter features some video clips of historians discussing Newton’s work in cultural context.

As a more isolated element, however, video interviews with scientists are gaining new levels of popularity and visibility. The “Web of Stories” features many interviews of varying lengths with prominent scientists (http://www.webofstories.com/channels/50044/stories). The Natural Histories Project delivers a more focused set of interviews with working naturalists of many stripes, from entomologists to artists, “focused on the future of natural history [in] four broad areas: society, education, environmental research and environmental management” (http://histories.naturalhistorynetwork.org/). The International Rice Research Institute produced and hosts a number of video interviews (with accompanying autobiographical essays built on the transcripts) with resident scientists discussing their lives, careers, and work (http://archive.irri.org/publications/today/Pioneer_Interviews.asp). The British Library is “creating a major archive for the study and public understanding of contemporary science in Britain” that will include 200 in‐depth interviews with British scientists speaking about “collaboration in teams,” “relations between science and government,” and how “scientific breakthroughs have taken place at the cusp between traditional disciplines rather than within well‐established fields (http://www.bl.uk/historyofscience). The Asthma Files rides this wave of interest in first-person accounts of scientific practice and thought, but pushes it in new directions: beyond the “celebrity” scientist delivering truths, to working scientists engaged in experimentation, world- and self-questioning, and trying a range of interpretive possibilities. The Asthma Files is also unique in its conjoining of video interview material with access to a scientist’s papers, and interpretive essays by humanities scholars.

Change, of course, is happening rapidly. A recent find that we are still mining for numerous insights, tools, and extensions for The Asthma Files is Jack Dougherty’s and Kristen Nawrotzki’s born-digital (under contract with the University of Michigan Press), open peer reviewed collection Writing History in the Digital Age (http://writinghistory.trincoll.edu/). Both the overall project and its digital presentation (essays plus peer commentary), and almost all of the individual essays and the digital humanities projects they describe, represent the kind of emergent work that The Asthma Files is doing. Most prominently, a digital encyclopedia on the 1918 flue epidemic being produced through the University of Michigan’s

18 Center for the History of Medicine (http://writinghistory.trincoll.edu/new-ways/the-american-influenza- epidemic-of-1918-judkins/) promises a similar mix of source materials (textual and visual) and interpretive analyses pertaining to a major public health event.

In terms of humanities’ analysis of the contemporary sciences, the Anthropological Research on the Contemporary (ARC) site at the University of California – Berkeley comes closest to TAF (http://anthropos-lab.net/about/). Like The Asthma Files, ARC produces humanities-informed analyses of contemporary bioscience, in particular synthetic biology and biosecurity issues. But ARC’s collaborative aspect exists only at a very high meta-level of abstract theory; there is little in the way of archiving and sharing of ethnographic material, productive commentary on that material for its continued iteration, or effort to translate to diverse audiences, including scientists themselves. developments in digital anthropology Concerning ethnographic work more broadly, The Asthma Files has been shaped through contact with a number of innovative digital projects in cultural anthropology. Although different in scope and content, Open Folklore (http://openfolklore.org/) has been a constant source of ideas and influence, not least for its unwavering commitment to open access and for the partnerships it has created (among folklorists, the American Folklore society, and the Indiana University libraries) to invent and sustain itself. Mukurtu (http://www.mukurtu.org/) is noteworthy for developing new software tools and cultural protocols, such as the Traditional Knowledge License, that allow indigenous communities to build, and manage appropriate access to, original collections of cultural materials and analyses. The website which we established and built as a portal and supplement to the non-open access journal Cultural Anthropology (http://culanth.org/), has become a rich and lively site for interviews with authors, multimedia supplements to journal articles, research guides to numerous topics and areas, and original essays. Anthropologies (http://www.anthropologiesproject.org/) is a new collaborative on-line project run by graduate students that delivers monthly collections of essays, ranging from interpretive cultural anthropology to visual anthropology to biological anthropology; it is not, however, a research platform for the archiving and sharing of materials. Digital Ethnography (http://mediatedcultures.net/about.htm) showcases ethnographic work using YouTube videos. exemplars in the digital humanities The University of Southern California’s Vectors journal (http://vectors.usc.edu/) has been an enduring source of ideas and inspirations for The Asthma Files. We share its commitment to combining multiple media (test, image, video) in both intellectually as well as aesthetically stimulating ways. Similarly, Cambridge Journal’s Urban History (http://journals.cambridge.org/fulltext_content/supplementary/uhy36_2supp001/index.html) and the Hypercities project (http://hypercities.com/) provide a beautiful model for combining multimedia, scholarly analysis, and archival and supplementary sources.

The Asthma Files “drawer” structure shares many of the functions and aspirations of the “clustered” conversations hosted in the varied sub-sites of the MediaCommons (http://mediacommons.futureofthebook.org/) , especially The New Everyday (http://mediacommons.futureofthebook.org/tne/). We aim to push their innovative forum for scholarly discussion even further beyond the blog post/comment form, the limitations of which they are well aware (see the use case narrative at http://www.openannotation.org/wiki/index.php/User:BHoffman)

The “cultural analytics” pioneered by Lev Manovich and the Software Studies Initiative ( http://lab.softwarestudies.com/2008/09/cultural-analytics.html) has a different scope and thrust than the comparative cultural analysis of science and scientists that TAF advances. Rather than analyzing large,

19 and largely visual, data sets to extract a global “culturomic” conclusions from them, The Asthma Files is designed to multiply and juxtapose numerous ethnographic interpretive analyses of particular scientific cultures.

As we incorporate semantic web capabilities and other new digital tools into TAF, there are a number of other projects that will be good to learn or borrow from, or simply contact and continue to monitor as they develop. Chief among these are the Open Annotation Consortium and its member projects (http://www.openannotation.org/wiki/index.php/OAC_Workshop_Use_Cases) that are developing new ways to annotate and interconnect documents, videos, and images. OAC participants that are of particular potential interest to The Asthma Files include the EVIA Digital Archive Project and its explorations of annotating ethnographic video (http://www.openannotation.org/wiki/index.php/User:ABurdette) ; Alfalab’s development of collaborative tools for humanities annotation (http://alfalablog.huygensinstituut.nl/?page_id=68); the Common Collaborative Media Annotation Framework being developed by the Academic Technology Group at Harvard (http://www.openannotation.org/wiki/index.php/User:PDesenne); and a number of projects at the Brown University Library (http://www.openannotation.org/wiki/index.php/User:AAshton) seeking to build on the Text Encoding Initiative (http://www.tei-c.org/index.xml) that undergirds many annotation projects.

The Association for Networking Visual Culture’s Scalar (http://scalar.usc.edu/anvc/) represents a suite of tools with functions – most importantly, the creation and visualization of multiple pathways through an authored set of materials – potentially applicable to The Asthma Files. Indeed, one of our graduate students and key Asthma Files contributor, Brandon Costelloe-Kuhn, participated in the summer 2011 NEH-funded workshop led by UNVC. Brandon is now well-versed in Scalar, having used it to develop a sub-project of The Asthma Files that tracks the ongoing travels of FEMA trailers used after Hurricane Katrina. Although Scalar is not an open source technology, Brandon will monitor the future release of its beta version, and compare its potentials to that of similar tools such as the open source Mozilla Popcorn’s popcorn.js (http://mozillapopcorn.org/popcornjs/) for combining video with web pages, text, and other elements. computational tools and social analysis The Sci2 Tool (https://sci2.cns.iu.edu/user/index.php) is helping to develop a “science of science” through the visualization of social networks and trends in the sciences. We want to explore how tools like Sci2 can extend and enhance TAF’s more humanities-based approaches to understanding scientific communities. As we add semantic web capabilities to TAF, we will also be exploring new data sources, from both the sciences and the humanities, to pull in. The Hathi Trust Digital Library, for example, currently lists over 445,000 entries containing the word “asthma,” of which over 125,000 are full-view items (http://babel.hathitrust.org/cgi/ls?q1=asthma&a=srchls).

Work Plan The work proposed here will require deep and sustained collaboration between Mike Fortun, Kim Fortun, Peter Fox, and the two GRAs working on the project – one from the humanities, and one from Rensselaer’s IT Program – along with Dan Price on a consulting basis. To support this, we will establish a regular and durable schedule of meetings. At Rensselaer, we will schedule bi-weekly, face-to-face meetings involving Mike Fortun, Kim Fortun, Peter Fox, and both GRAs. The first half of each meeting will be spent presenting work since the previous meeting, in accord with the project schedule. The second half of the meeting will be spent planning work for the coming two weeks, concluding with an evaluation of our progress, mindful of the long-term schedule. Many of these meetings will require significant investments of time. Fox will need to acquire deep understanding of the work flow ethnographers move through so he can lead integration of semantic web capabilities into The Asthma Files’ Plone platform, for example. Mike and Kim Fortun will need a finer-grained understanding of the

20 technical capacities and demands of semantic web tools to strategize their adaptation to the interpretive contexts and goals of the humanities.

For the past year, Mike Fortun and Kim Fortun have had weekly skype meeting with Price to advance the customization of the Plone platform and the development of The Asthma Files overall. We will continue meeting with Price (based in Houston) via biweekly skype calls over the course of this grant.

We will use the Tetherless World Constellation’s collaboration documentation system that uses trac (ticket) and svn (software) to allow all project members to add and access design documents, diagrams, use cases, and other project planning materials; see http://tw.rpi.edu/web/project/DQSS for an example. The documentation system will include a project schedule that will be used to orient and pace the work. A more detailed project schedule and work plan is part of the work occurring under Rensselaer seed funding to The Asthma Files over the next six months (January-June 2012), elaborating on the following schema: year 1: customizing the Plone platform and integrating semantic web capabilities • Mike and Kim Fortun will lead continued development of TAF repository and files by current researchers, as a way to map and test diverse researcher’s workflow, data types and need for supporting tools.

• Mike Fortun will lead continued customization of TAF Plone platform, working with Peter Fox and the ITWS GRA to prepare fit with semantic web capabilities already developed at Rensselaer, and with Dan Price to prepare fit with VWire.

• Peter Fox will lead (assisted by the ITWS GRA) articulation of both retrospective and prospective use cases for humanities researchers’ work with TAF, evaluating potential for semantic content management. 14 Fox will then lead research on and development of humanities specific semantic web methodologies, tools and techniques. This will allow us to answer a key methodological question: How can information modeling and subsequent ontology development/ extension undergird and advance collaboration among humanities scholars?

A use case is a methodology used in systems analysis to identify, clarify, and organize system requirements.15 The use case is made up of a set of possible sequences of interactions between systems and users in a particular environment and related to a particular goal. Use cases can be employed during several stages of software development, such as planning system requirements, validating design, testing software, and creating an outline for online help and user manuals. In developing use cases in the humanities, the words used in the use case, i.e. nouns, verbs, and the ordering and qualification of constraints will be extremely important since they are the semantics that need to be represented.

• Dan Price (working as a consultant) will lead effort to incorporate Vwire, a visual analysis and argumentation tool, into TAF’s platform. Price and the Vwire group were awarded an NEH start-up grant in 2011 to develop a digital tool allowing humanities researchers to juxtapose images drawn from a visual database to make visual arguments with potentially more depth, subtlety, and complexity than predominantly one-dimensional scientific arguments. Vwire’s development for the Python-based Plone platform was one of the factors influencing our decision to build The Asthma Files with Plone, so it should be a fairly easy incorporation on technical grounds. We plan to first test

14 For a general view, see Evan Patton, Eric Rozell and Patrick West (2011) “Publishing and Managing Semantic Project Metadata across Content Management Systems,” Earth Science Informatics, submitted. 15 Alistair Cockburn, Writing Effective Use Cases (Addison-Wesley, 2002). 21 Vwire’s ability to analyze the way different TAF researchers combine and re-combine sets of stand- alone images drawn from the TAF image repository: graphs, charts, photographs, and other data visualizations from scientific papers; asthma-related photographs from Creative Commons domains; video stills; GIS and similar mapping images; and so on. We then plan to experiment with Vwire’s capacity for analyzing juxtapositions of asthma file fragments (e.g. different responses to a shared question) or entire asthma files themselves.

• Kim Fortun, Mike Fortun and Dan Price will lead development of humanities research results, prioritizing development of findings about the sociocultural dimensions and dynamics of complex conditions that can orient work to make the TAF platform shareable with other humanities research groups concerned with complex conditions (other than asthma; the US food system, for example; Iranian political culture). year 2: combining ethnography and data science, drawing in new users, sharing the platform • Kim Fortun, Mike Fortun and Peter Fox will explore ways data science, social network analysis and semantic web methodologies and technology can help humanities scholars characterize distributed, possibly emergent expert communities (that are the subjects of humanities analysis). This will extend Kim Fortun’s conceptualization of the formation and dynamics of “ennunciatory communities” (Fortun 2001), and will address the second digital methodology question in this phase of the project. This component will involve a number of steps (aided by the GRAs): o Assessment of the kinds of data that can be accessed and queried to discern the focus and techniques of a particular expert or expert community. o Text mining of terminology in unstructured scholarly material coupled with disambiguation of the semantics found in common science vocabularies (e.g. homonyms) to discern the foci of different and distributed but overlapping experts and expert communities. o Development of additional queries and methodologies for data analysis productive of information relevant to the humanities. o Development of techniques for effectively integrating computational knowledge with the qualitative, deeply interpretive knowledge of history and cultural anthropology.

• Mike Fortun, Kim Fortun and Peter Fox will explore ways data science can help humanities research characterize the knowledge practices of different kinds of experts, drawing out interdisciplinary practices and methodological innovation – addressing our third digital methodology question.

The aim is to advance ethnographic understanding of contemporary, data-intensive scientific practice. We will explore if and how data science can enable ethnographic observation of the way scientists find, move through and extract from large data sets. We will focus on data management, use and sharing in three scientific domains implicated in understanding asthma: computational toxicology, environmental genomics, and air quality modeling. All three domains and associated datasets have major significance in the environmental sciences, and also have significant public policy implications. All also produce findings that are likely to be contentious given implications for stakeholders. Characterizing the type of science carried out within and through these data sets is thus critical.

• The TAF installation crew will work as a whole to develop prospective use cases for engagement with TAF beyond the humanities. In this phase, we will develop use cases for air pollution researchers, geneticists, public health professionals, k-12 educators and performance artists, supported by ethnographic interviews.

22 This component of the work will address our fourth digital methodology question: How can leading- edge digital techniques help humanities scholars produce analyses and modes of representation that help people understand and respond to complex conditions?

• Kim Fortun, Mike Fortun, and Peter Fox will lay ground to make the TAF platform shareable with other humanities research groups.

Staff and Rensselaer Context Rensselaer provides a unique environment for developing digital humanities projects because it has notable strength in humanities study of information culture, practice and technology, and in computer science, with a long record of collaboration across these domains. In the Department of Science and Technology Studies, historians and anthropologists study how developments in digitization and new data flows have affected knowledge production in various societies, scientific fields and organizations; they also are known for methodological innovation, emergent from the challenge of adapting ethnographic methods to the study of the sciences and scientific culture. Computer science at Rensselaer includes the internationally renown Tetherless World Constellation that explores the principles and architectures that underlie the Web, aiming to extend the capabilities of the web in ways responsive to changing scientific, policy, educational, and societal needs. The Tetherless World Constellation is the group behind data.gov, which provides scientists access to government data sets relevant to their research. The Tetherless Constellation has been cited by the White House for helping promote government transparency. Since the early 1990s, Rensselaer has had a cross-campus Information Technology program, including undergraduate and graduate education, and research. This combination of expertise and record of collaboration is uncommon, and provides a distinctive and strong ground on which digital humanities projects can develop.

Kim Fortun, a cultural anthropologist and professor in Rensselaer’s Department of Science and Technology Studies, has spent her career studying how people in different cultural and organizational contexts deal with environmental health problems. She also is recognized as a theorist of (experimental) ethnographic method, and as a leading advocate of open access scholarship in anthropology. The latter emerged through her five-year role as co-editor (with Mike Fortun) of the Journal of Cultural Anthropology; Kim Fortun and Mike Fortun developed the journal’s first digital presence through use of Open Journal Systems (OJS) to manage manuscript flow and reviews, and through development of the http://www.culanth.org/, now one of the most content-rick sites in cultural anthropology. Kim Fortun’s book Advocacy After Bhopal: Environmentalism, Disaster, New Global Orders (UChicago, 2001) was awarded the Sharon Stephens Prize by the American Ethnological Society. Kim Fortun and Mike Fortun co-edited Major Works in Cultural Anthropology, Vol 1-4: Moorings, Modernities, Emergence, Engagements (Sage, 2009).

Mike Fortun, a historian and anthropologist of science, is associate professor in Rensselaer’s Department of Science and Technology Studies. He studies how scientific communities develop and cohere, particularly within biology and genomics. A key current focus in on developments in asthma genetics and gene-environment interaction research. Mike Fortun is a leading advocate of collaboration between scientists and humanities scholars, and of open access humanities scholarship. He co-authored Muddling Through: Pursuing Science and Truths in the 21st Century (Counterpoint,1998) with physicist Herbert Bernstein. His second book Promising Genomics: Iceland and deCODE Genetics in a World of Speculation (UCalifornia, 2008) interweaves ethnographic, literary and poststructural analyses.

Peter Fox is a Tetherless World Constellation Chair and Professor of Earth and Environmental Science and Computer Science at Rensselaer. Previously, he was Chief Computational Scientist at the High Altitude Observatory of the National Center for Atmospheric Research. Fox’s research focuses on distributed semantic data frameworks and informatics, exploring the full life-cycle of data and

23 information within specific science and engineering disciplines as well as among disciplines. In a current project, he is collaborating with Woods Hole Oceanography Institution (WHOI) to study ocean ecosystems. Fox is past chair of the AGU Special Focus Group on Earth and Space Science Informatics and now chairs the International Union of Geodesy and Geophysics Union Commission on Data and Information. Fox is also an associate editor for the Earth Science Informatics journal, a member of the editorial board for Computers in Geosciences, served on the International Council for Science's Strategic Coordinating Committee for Information and Data and currently serves on the NRC committee for Future Career Paths and Education and Training for Digital Curation. Fox recently won the Ian McHarg Medal from the European Geophysical Union for his contributions to Earth Science using IT, and received the 2012 Martha Maiden Lifetime Achievement award for service to the Earth Sciences Information community.

Dan Price, a philosopher and Assistant Research Professor at the Honors College at the University of Houston, specializes in contemporary French and German phenomenology and critical theory. He has published two books (Without a Woman to Read and Touching Difficulty) as well as articles on the problems of constituting objects of knowledge in post-Kantian philosophy. Price is the Lead in a NEH funded digital humanities project to develop V-Wire, a visual analysis tool.

Final Product, Dissemination and Evaluation The funding requested here will

• advance comparative, ethnographic understanding of ways people, organizations and societies deal with complex conditions, foregrounding ways different kinds of experts work and collaborate.

• advance methodological understanding of ways informatics can contribute to humanities research.

• support development of a digital humanities platform that • is built on a Plone open source content management system framework with semantic enhancements, which can be shared with other humanities research groups once customized and stabilized.

• functions as a portal to a suite of open source tools useful for humanities research, including tools developed in data science for other scientific communities.

• provides a place to archive and share primary data generated by humanities scholars, particularly ethnographers.

• provides a space for and facilitates analytic collaboration among humanities scholars.

• provides an opportunity to experiment with new forms of peer review for humanities research.

• provides opportunities to involve students in humanities research as it progresses.

• quickens the public availability of humanities research, in an open access form.

• positions humanities scholars in the broad effort to develop peer reviewed, open access scholarship.

24 Sustainability Plan Over the last five years, Mike Fortun and Kim Fortun have developed The Asthma Files’ content, collaborative research community, and technical platform with only modest resources and limited time, but the project has flourished, attracting the interest not only of ethnographers, but also of video artists and performers, journalists and natural scientists. Ethnographers have been drawn to the project because of topical interest in asthma and environmental public health; because of conceptual interest in complex conditions and their socio-cultural dynamics; because of interest in new forms of ethnographic research, collaboration and expression; and because of interest in the open source/open access commitments of The Asthma Files. Indeed, we’ve had more interest than we’ve been able to follow up on and accommodate. Refining The Asthma Files technical platform as proposed here will make this much easier, allowing new collaborators to move much more independently through workflow options and file creation. Technical refinement will also allow us to make more of the site publicly accessible, which will also help sustain interest in the project. As we have done over the last few years, we will also continue to report on the project in various venues – conferences, department colloquiums, academic workshops – as these have resulted in many expressions of interest, by individual researchers and by groups. Building on this, we expect to have more events such as an upcoming (spring 2012) workshop hosted by the Center for Persian Studies and Culture at the University of California-Irvine. The workshop will stage interviews with Iranian physicians, urban planners and environmentalists that will become part of a set of asthma files detailing Tehran as an asthmatic space. The University of Houston sponsored a similar workshop (focused on Houston) in 2009, which generated extremely rich content, including video of fifteen interviews and of a public event that brought together city officials, health professionals, air quality researchers and environmentalists. We’ve begun cultivating contacts that can help us stage similar workshops in a range of “asthmatic spaces.”

Our years as journal editors (of Cultural Anthropology) prepared us well for the challenge of building and sustaining a research network, supported by digital tools. As noted in our narrative, we initiated use of Open Journal Systems (OJS) to coordinate authors, manuscripts, and reviewers. We also developed the journal’s first website, culanth.org, through which we promoted journal content to new audiences. Much of the content of the website – supplemental pages for each essay in the journal’s 25 year archive, for example – was generated by editorial interns, Ph.D. students at universities around North America. Coordinating interns gave us experience, including hands-on experience developing digital infrastructures, that has served us well in working to build a research community to support The Asthma Files.

We are confident we can continue to sustain the project through its next growth phases with similarly modest resources, with funding for the next 5-7 years coming in the form of small grants primarily for continued content development, with some technical development and support built in. The boost of in- kind support that we received for this proposal from Rensselaer (graduate student support, technical assistance and support) as it builds its commitment to new initiatives in the digital humanities will also continue to provide a solid foundation for the project. The integration of semantic web tools and similar tools developed for the natural sciences into The Asthma Files site will make it a unique site where asthma researchers and professionals can converse and collaborate with humanities scholars. This will also make The Asthma Files attractive to new sources of financial support from NIH, from other public and private asthma research and advocacy organizations, and from individual donors.

The core of The Asthma Files will continue to be its steadily growing database of empirical research materials, including interviews, and the accompanying interpretive material ranging from brief annotations in a “file,” to short essays integrating multiple files. We have built and will continue to maintain this open, collaborative structure through both undergraduate and graduate teaching, and by growing a network of researchers eager to contribute. The multiple scientific and social dimensions of asthma, and the multiple humanities perspectives that the project cultivates, greatly facilitates the extension of both The Asthma Files themselves and the research collaboration that produces them.

25 Widely varying scholarly interests, disciplinary backgrounds, fieldwork experience, and geographical locations or specializations all benefit the comparative perspectives of The Asthma Files, and have made it easy to sustain and build a network of scholars that contribute original materials, and to function increasingly as a network of peer reviewers. Because all material on The Asthma Files will be open access with a Creative Commons license, all contributors will be able to use anything they create (and with the proper attribution, any other contribution) in any future scholarly publication. This will be especially important for more junior scholars who need publications in more traditional peer-reviewed journals, and will help sustain the vitality and growth of The Asthma Files.

Continually building the content of the site, then, will proceed through the Fortuns’ committed involvement as primary researchers, through student work emergent from their teaching, and through a network of researchers contributing materials and interpretive essays. We also anticipate a number of events such as the UC Irvine forum with Iran experts mentioned previously, where we are invited to workshops to collectively generate, collate, and upload new area- or topic-specific material. In a similar vein, we plan to apply to the Wenner-Gren Foundation for workshop funding to bring international scholars working on asthma in different national and cultural contexts together for training in The Asthma Files platform and for further diversifying content. Further, because the project enables collaboration at a distance, the need for researcher travel can be minimal. Interviewing can even be done at a distance, given the audio and video recording capabilities of skype.

Additional funding to sustain The Asthma Files could come from a variety of places. It should first be noted, however, that we have designed the project aware that financial support could at times be very limited. The open source technologies The Asthma Files employs certainly aren’t without expense for maintenance, but they do shelter us from escalating costs of proprietary technologies. The building out of the Plone platform that is proposed here will finalize the structure and protocols for the site. The site’s existence on a secure server provided and supported by the Tetherless World Constellation at Rensselaer can continue more or less indefinitely with little more than in-kind support from Rensselaer.

With the incorporation of semantic web and similar digital tools in year 2 that will extend The Asthma Files into new science data sets, The Asthma Files will enter a new stage of collaborative work that puts humanities scholars into conversation with asthma researchers and other professional who will be drawn into using and contributing to the site. New funding opportunities will become viable at this stage, and we will be able to apply for National Institutes of Health funding, particularly Research Dissemination and Implementation Grants (R18), or individual researcher grants (R01) under any of a number of rubrics such as “Systems Science and Health in the Behavioral Social Sciences” or “Research on Ethical Issues in Biomedical, Social and Behavioral Research.” In addition to NIH broadly, the interdisciplinary foci of the The Asthma Files should be very appealing to many initiatives and funding opportunities at a number of individual institutes such as the National Heart, Lung and Blood Institute, the National Institute of Allergy and Infectious Diseases, and the National Institute of Environmental Health Sciences. Furthermore, we plan to approach private foundations such as the Asthma and Allergy Foundation of America, and the American Asthma Foundation, who should be attracted to the unique combination of scientific and humanities voices offered by The Asthma Files, and how this collaborative digital project opens new possibilities in scientific communication that can increase public literacies concerning asthma and similar complex conditions – including the complex condition known as “scientific research” itself.

26 Data Management Plan 1. Roles and responsibilities As PI, Mike Fortun has overall responsibility for verification of implementation of this data management plan. Patrick West (staff member in Tetherless World Constellation [TWC]) will oversee data management and monitoring the data management plan, and reporting its status to the PI. Adherence to this data management plan will be independently checked by digital curators and metadata librarians at the RPI Folsom Library who participate in data.rpi.edu activities. The Asthma Files portal will include a status page for demonstration of compliance. A fundamental aspect of The Asthma Files is how the built-in workflow defines the process for establishing and transferring responsibility for various data and information products. In addition, the annotation capabilities of the semantic Plone environment ensure that each artifact will have a time- stamped history of ownership. PI Fortun will retain responsibility over time for decisions about data ownership and preservation.

2. Expected data The Asthma Files data types include images, narratives in text and sound recordings, documents in formats (such as, but not limited to) jpg, gif, tiff, png, pdf, ps, wav, qt, wmv, doc, docx, ppt, ppx, xls, xlsx, csv. The Asthma Files provides data capture and creation using the Plone system; via file/ object upload and 'data' entry (raw and forms). The Asthma Files implements (group/role) digital rights policy controls in the Plone system at a fine-grain level concerning what data is shared and with whom. Each distinct object will be assigned a Handle identifier using RPI's Handle server (currently part of data.rpi.edu and administered by TWC. The RPI prefix is 10833). The Asthma Files includes existing data of the abovementioned types from activities to date. These data were obtained from interviews (recorded and notes), and contributions from collaborators. Free form comments, blog entry pointers and user contributed tags/annotations will also be associated with submitted data. We view that any/ all incidental information greatly adds to the overall 'documentation' of the data. The relation between the new data and existing data is similar in raw content types, but differs in that new data will be entered/ captured with the newer semantic annotations and thus have greater inter-relations to other content. Prior data can also have these semantic annotations via retrospective data entry via web forms or scripts. As PI, Mike Fortun will apply the following criteria for what data will be preserved. By default, all 'File' content and annotations are preserved according to OAIS standards, including PREMIS metadata annotation fields as part of the standard data management. Any exceptions to full preservation, e.g. by request of an owner of an artifact are made at the time of capture, with agreement by the PI. Any content in the overall system that is not associated with a 'File', for which an authentic original exists, e.g. alternate formats or resolutions of an image file, will not be preserved but will be archived. All authentic originals of content not associated with a 'File' will be preserved, in the manner previously noted. The Asthma Files data 'content' is stored on TWC production/ application servers during the project's lifetime. These servers are hosted at the RPI dotCIO's facility in the Voorhees Computer Center. The Asthma Files content will be backed-up nightly using TWC's backup service arrangement with the RPI dotCIO's facility in the Voorhees Computer Center, physically separated from the host computers.

3. Period of data retention Individual researchers will use the Plone’s security features to designate IRB protected material, “Files” in process, or any other material not deemed public as private and password protected. Once published, all materials contributed by researchers to The Asthma Files are open access under a Creative Commons license, and thus there are no embargo periods.

4. Data formats and dissemination

27 Data Formats: The Asthma Files data types of uploaded content include images, narratives in text and sound recordings, documents in formats (such as, but not limited to) jpg, gif, tiff, png, pdf, ps, wav, qt, wmv, doc, docx, ppt, ppx, xls, xlsx, csv. These and potentially other formats must be accommodated to provide the lowest possible barrier to content contributors. These formats are also supported by commonly available free and commercial applications. Additional content in the form of text, annotations and related metadata are encoded in the Resource Description Framework (RDF, a W3 Recommendation). Transformations among formats will be provided to enable data sharing via comma-separated- values (csv) representations of all spreadsheet-style data files. No proprietary images formats are envisioned at this time. In addition to The Asthma Files ontologies and their instances (in RDF), Dublin Core metadata will be generated by the Plone CMS. PREMIS (Preservation metadata) will also be generated. The Asthma Files ontologies refer to community standard vocabularies, e.g. Friend-of-a-Friend (foaf). The detailed metadata are captured via form entry (and scripts where these are more appropriate) in Plone and stored in the RDF triple store. Zotero is used for bibliographic references. Contextual details for metadata are fundamentally a part of The Asthma Files portal environment as the state, and stage of the workflow, as well as the people contributing, subject of the 'File', and inter- relations are explicit in the data capture. Further, relevant contextual provenance metadata is key to verifiability, reproducibility and directly supports the preservation stages. Dissemination: All public content will be immediately accessible via The Asthma Files Plone site, including files for download, within the role-permission constraints discussed earlier. Various forms of restricted content would be accessible by registered users, with assigned permissions and rights access by the PIs. Permission restrictions are an important component of The Asthma Files workflow. Confidential content (e.g. interviews), pre-review content, and review comments, are the primary examples of when permission is restricted. Ethical issues include protecting anonymity of reviewers and protection of research subjects as stipulated by IRB requirements. These matters are resolved with permission restrictions noted above. The Asthma Files research protocol and IRB forms are reviewed annually by Rensselaer’s IRB; they have been consistently re-authorized. Important provenance information is retained and is shareable based on specific access permissions to support verifiability, reproducibility and preservation.

5. Data storage and preservation of access The PI retains overall responsibility for assigning the tasks of maintaining and curating components of TAF: from a 'File', to its contents, detached content, and the underlying ontologies. The archive strategy will be to snapshot the complete content of The Asthma Files once a year, e.g. in rar format on to disk and removeable media storage. These archives and associated media will become part of the long-term migration strategy for all RPI institutional repository content. All VCC (see above) hosted facilities provide long-term storage and backup facilities. TWC along with the RPI Folsom Library provide the requisite preservation capabilities (see below). All content for The Asthma Files will be retained after the project is completed up until the PI determines that the content must migrate to another investigator or be passed on to the identified repository, with a copy being placed in RPI's institutional repository for preservation access. Key metadata, via web forms or harvested from the object upload, will accompany the data when it is captured. Elements of the metadata will populate key fields of the ontologies and other metadata standards, such as DCMI and PREMIS in support of re-usability and integratability.

28 APPENDIX 1: Screenshots from The Asthma Files

The Asthma Files homepage:

TAF sample page:

29 TAF sample page:

TAF sample page:

30 APPENDIX 2: TAF Shared Questions

ACCOUNTING SCIENCES COMMUNICATION CARE EXPERIENCE SPACE What is said What are said (by What is said about What does How is How is this about asthma this researcher) to asthma through this mode asthma space through this be causes, this of asthma experienced particular, accounting mechanisms and communication care by this and how initiative? triggers of asthma? initiative? Is there consist of? person or does it What is said to be an effort to What group? demonstra

new about the data innovate either understan te general or claims? through content ding of patterns of or form? asthma is asthma built into incidence this mode and of care? governanc

ARTICULATION e? Who carried Who was Who produced Who Who is out this interviewed or this designed experiencing accounting conducted the communication? or is asthma? initiative? study? providing care? (etic) What (etic) What (etic) What (etic) (etic) What (etic) What genealogy has genealogy has genealogy has What genealogy genealogy shaped this shaped the study, shaped this genealogy has shaped has shaped accounting researcher and communication has this asthma this initiative claims? What initiative? What shaped experience? asthmatic (Foucault)? thought styles thought styles this ways What space? (Fleck) and (Fleck) and of caring cultural What disciplinary habits conceptions of for forms, political, are behind the communication asthma? thought economic articulation? What (Derrida)? What What styles and social organizational, kinds of expertise thought (Fleck) and history political economic and experience styles constructs of What influences and shaped the (Fleck), health and cultural technical designers work? histories disease? forms? infrastructure have What kind of of health shaped this study or collectivity and care, and researcher? technical cultural infrastructure forms enabled this shape this communication? mode of care? (emic) What (emic) What ecology (emic) What (emic) (emic) What organizational of practice and ecology of practice What ecology of

or political understanding does do the designers ecology of experience economic the study or of this practice does this ecology does researcher situate communication do these person or this accounting themselves within? situate themselves care givers group initiative What other studies within? How do situate situate

GENEALOGY situate itself are referred to? they read the themselve themselves

31 within? communication/m s within? within? edia landscape What do they operate these within? What are caregivers their goals with work their against? communication work more generally? What study What study design How is this How is this What are the How has design oriented oriented the study, communication mode of patterns in the this accounting or was proposed or designed? What is care this particularit initiative? implied by the the structure and organized, experience y of this researcher? What logic, and whom and of asthma? space scale is prioritized, does it address? delivered? What has forced and why? What is figure, and How has this person innovation what is ground? relevant or group in existing How does the expertise learned to study medium shape the been built be mindful design? message and of? (McLuhan)? sustained? What data was What data was What What data What collected or collected or drawn data/information is drawn information drawn? on to make the is foregrounded in on to does this claims made? this modulate person or communication? this mode group collect What is of care? or use to backgrounded or What understand marginalized informatio and care for (Spivak)? n is their ignored? asthma? How was data How was data What narrative or How is this How does analyzed? analyzed? argument does mode of this person this care or group communication evaluated - analyze their

put forward? - among experience caregivers, and in available

DESIGN particular? care? How have data What narrative What is the What How is the What and findings structure was used narrative narratives experience narratives been to convey findings? structure of this are used to of asthma accompany disseminated? communication? convey narrated? or define this mode What other this space? of care? asthma How do What visualizations What What narratives competing are used to convey visualizations are visualizati are narratives results, perhaps used in this ons are referenced? define this operating communication? used to What are the asthmatic iconically? communic dominant space DISSEMINATION 32 ate this tropes? differently? mode of What genres care? can it be How, technically, What kind of How, placed have data and insight is technically within? findings been provoked? , is disseminated? informatio n about this mode of care shared? How have the (emic) How have What kind of Who has findings of this data and findings subject is been accounting been received? produced? What receptive initiative been kind of collectivity to this received? is produced? mode of care? (etic) What (etic) What (from (etic) legitimates and the perspective of What corrodes this the TAF analyst) legitimates articulation of legitimates and and asthma science? corrodes this corrodes instance of asthma this mode communication? of asthma care? How does this What does this What kind of accounting researcher or study action does the implicate call for in asthma communication asthma care care and seek to mobilize? and governance? governance? How is this How does the study What subtexts are What are What is How does method of leverage digital communicated the limits troped as this space accounting for tools and work with implicitly by this of this ineffable or re-inscribe asthma held large data sets? communication? mode of unknowable itself in the accountable? What does the care? in this definition How does the study communication experience? of the or researcher deal disavow or asthmatic with and assess silence? At what space? different kinds of point does the data, and communicator researchers from acknowledge her different own disciplines? inarticulateness?

How does the study or researcher demonstrate methodological reflexivity and care

REFLEXIVITY for the data?

33 How was the robustness of data and findings evaluated? What kind of scientific persona is cultivate and idealized (Keller, Daston and Gallison)? What (if any) kind of cultural critique is articulated by this research (Marcus and Fischer)? What is said or implied by the study or researcher about the kinds of public understanding of science called for? What kind of What does this What is said or What is What is said asthma/enviro researcher or study implied by this said or or implied nmental health suggest about the communication implied by by this literacy is (contemporary) about the kinds of this mode experience called for by system(s) within asthma, scientific of care about the

this mode of which complex and about the kinds of accounting for problems are cared environmental kinds of asthma asthma? for and governed? literacy called for? asthma literacy literacy called for?

LITERACY called for? What does this What does What does What does communication this mode this asthma this initiative suggest of care experience asthmatic about the suggest suggest space (contemporary) about the about the suggest system(s) within (contempo (contempora about the which complex rary) ry) (contempo problems are system(s) system(s) rary) cared for and within within system(s) governed? which which within complex complex which

problems problems complex are cared are cared for problems for and and are cared governed? governed? for and

SYSTEMS governed?

34

APPENDIX 3: Public presentations of The Asthma Files Erik Bigras 2011 Playing with Asthma: Embodiment and Care Through Digital Practices. Presented at Rensselaer Polytechnic Institute. Science and Technology Studies Department. November 11, Troy, NY

2011. Playing with Asthma: Embodiment and Care Through Digital Practices. Presented at the Society for the Social Studies of Science Annual Conference. November 2-5, Cleveland, OH.

2011. Communicating Asthma Through Digital Play: Challenging Dominant Modes of Education. Presented at the Apparatuses; Matter; Materialities Conference. May 20-22, Toronto, ON, Canada.

Brandon Costelloe-Kuehn 2010 “The Asthma Files 2.0: Promising Experimental Scientific and Environmental Communication,” with Kim Fortun, Meeting of the Society for Cultural Anthropology, Santa Fe, NM, May.

2010. “Proliferating Participation: Expanding Ethnography in the Digital Age,” Science and Technology Studies Graduate Student Conference, Troy, NY. February.

2009 “The Asthma Files as Knowledge Object: Collaborative Articulations of Complexity,” with Ali Kenner, Annual Meeting of the American Anthropological Association, Philadelphia. December 2009.

Kim Fortun 2011 “Experimenting with the Asthma Files, ?.0” Annenberg Scholars Symposium: “Putting Theory in Production.” University of Pennsylvania. December 4.

2011 “Experimenting with the Asthma Files, 3.0.” Panel, “Digital Anthropology: Projects and Projections,” Annual meeting of the American Anthropological Association, Montreal. November 20.

2011 “The Asthma Files, 2.0.” Panel, “Digital STS: Projects and Projections,” Annual meeting of the Society for the Social Studies of Science, Cleveland. November 3.

2011 “Ethnography in Late Industrialism,” Symposium on Writing Culture at 25: Theory/Ethnography/Fieldwork. Department of Anthropology, Duke University. September 30.

2011 “Liberating Anthropological Scholarship?” Digital Humanities Seminar Series, Franklin Humanities Institute, Duke University. September 30.

2010 “Opening Knowledge Systems: Experiments in Digital Humanities,” Plenary lecture, Conference on Archiving Community Knowledge. Ambedkar University, New Delhi

2009 “The Asthma Files,” invited presentation. Workshop: “Asthmatic Spaces: Houston,” University of Houston Honors College. November 17.

2009 “Teaching Theory In/Of Ethnography,” invited presentation. Workshop: “At the Juncture of Ethnography and Social Theory,” Department of Anthropology, Rice University. April 25.

2009 “Experimenting with The Asthma Files,” Workshop: Health and Society Quadrant Initiative, University of Minnesota Institute for Advanced Study and University of Minnesota Press. April 15.

35 2009 “Experimenting with The Asthma Files,” lecture. Politics, Society, Environment & Development Seminar Series, Institute for Social and Economic Policy Research, Columbia University. March 6.

2007 “Experimenting with The Asthma Files,” Society for the Social Studies of Science Annual Meeting, Montreal, Oct. 11-14.

2007 “From Bhopal to the Informating of Environmentalism and the Asthma Files,” lecture. Center for the Humanities, Stony Brook University. October.

2007 “Experimenting with The Asthma Files,” invited presentation. Workshop: “Lively Capital 2,” Department of Anthropology and Center for Ethnography, University of Irvine. April.

2007 “From Bhopal to the Asthma Files,” lecture. Bard College. March.

Mike Fortun 2011 “Care, Creation, and the Impossible Sciences of GeneXEnvironment Interactions in Asthma: Promising Genomics V. 2,” Workshop n Experimental Biologies and Translational Research, Department of Anthropology, University of Chicago, November 6-7.

2011 “Care, Creation, and the Impossible Sciences of GeneXEnvironment Interactions in Asthma” Videoconference presentation, CESAGEN, Cardiff University and Lancaster University, November 9.

2010 “Astonishing Genomics: Care of the Data, Solicitude, and the Right to Make Promises in Asthma Research- to-Come,” Workshop on “Scientific Collaboration, Interdisciplinary Pedagogy, and the Knowledge Economy,” Department of Education, University of Oxford, September 9-10.

2010 “Asthma Genetics Inside-Out, Carefully,” Annual Meetings of the American Anthropological Association, New Orleans, LA Nov. 17-21.

2010 “Care of the Data, Solicitude, and the Right to Make Promises in the Science-to-Come,” Biannual Meeting of the Society for Cultural Anthropology, Santa Fe, May 7-8.

2009 “Experimenting With The Asthma Files” Institute for Advanced Study, University of Minnesota, April 15.

2007 “Asthma, Archivally: Excess and Experiment in Interdisciplinarity” Plenary speaker at conference “Unhealthy Professional Boundaries? Working Together in Health and Social Care,” Goodenough College, London UK, 4-5 December.

2007 “Care of the Data in the Genetics of Asthma” Society for the Social Studies of Science Annual Meeting, Montreal, Oct. 11-14.

2006 “The Asthma Files,” Society for Literature, Science, and Art Meeting, New York, NY, Nov. 10-12.

Alison Kenner 2011 “Patient Demographics and the Asthma Epidemic: Understanding How Age and Care Relations Shape Health Literacy.” Political Sociology of Science and Technology Conference, Troy, New York. April.

2011. “Accounting for Asthma and Air Quality: Understanding Biological Citizenship in Contemporary Epidemiology.” Gordon Cain Conference, Chemical Heritage Foundation, Philadelphia, PA. March.

2010 “Simpli-cities: Environmental Health, Asthma, and Graphematic Space.” Society for Cultural Anthropology Meeting, Santa Fe, New Mexico. May.

36

APPENDIX 4: Plone/Drupal Comparison PLONE DRUPAL

Ease of Hosting: Requires VPS Easy to host on any standard servers

Setting up Simple Site: Requires command-line access Easy because of pre-packaged options

Setting up Complex Site: High learning curve, but more options Complex templates and requires coding available out-of-the-box knowledge

Ease of Content Editing Clear interface Clear interface

Ease of Site Administration: Out-of-the-box file and media management Third-party media and file management

Updates done in Plone Graphical Flexibility: Updating templates requires FTP access

508-compliant Not 508-compliant Accessibility: Cross-website sharing Cross-website sharing Structural Flexibility: Detailed workflow configuration is Draft or published modes only User Roles and Workflow: possible

Allows user-submitted content Allows user-submitted content Community/Web 2.0 Functionality: Python and many add-ons available PHP and many add-ons available Extending and Integrating: 6 security advisories from 2007-2010 23 security advisories from 2007-2010 Security: Community helpful to newcomers Large user base Support/Community Strength: 1) Administrative functions are a bit more difficult in Plone. 2) Site management also a bit more difficult in Plone. 3) Plone has more functions hard-coded right into the CMS so depends less on add-ons and third-party interventions. 4) From a user's perspective, both Plone and Drupal behave somewhat similarly. 5) For IRB purposes, Plone's architecture is less vulnerable to intrusion. 6) Plone's built-in workflow and publishing options allow for potentially more flexibility when it comes to creating a peer-review process. 7) Plone is 508-compliant out-of-the-box. 8) Python vs PHP: Python's tighter syntax structure makes for a more robust platform (most mistakes will be picked up during the programming as opposed to during the use), but PHP is more widely used. It's possible to have a robust product with PHP, but it requires more attention to the code. So if we have someone write customized add-ons or modules for us (or we use someone else's custom modules and add- ons), there's a bigger chance that Python will produce a result that will be easily portable across platforms/projects.

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Appendix 5: Educational and Social Implications of The Asthma Files Research The Asthma Files research has characterized the conceptual and information challenges posed by asthma, and complex conditions in general. Drawing on this characterization, we have, in turn, characterized the environmental health literacy needed. It is literacy, a new common sense, called for by the conditions of late industrial society. Something akin to what Gregory Bateson called an “ecology of mind.” Such literacy involves:

• People understanding their own health and wellbeing as shaped by an array of both proximate and far-off causes. Diet and cigarette smoke need to be considered, for example, as well as the health effects of transboundary air pollution and climate change.

• People understanding that their own actions have an array of proximate and far off effects. In choosing when and what to drive, one has an affect on air quality for example. In choosing consumer products (made of vinyl, for instance), one becomes involved in an occupational health hazard.

• People having a complex understanding of different scientific disciplines and medical specializations, aware that they rely on diverse methods, produce many types of knowledge, are ever evolving. Science needs to be understood as a crucial but far from straightforward social resource.

• People having a complex understanding of government at various scales, from the local to transnational, made up of diverse agencies and types of experts, which really on diverse decision- making processes.

• People understanding the history of disaster and decision-making failures, the vulnerability of some populations and regions, and varied approaches to risk management, reduction and communication.

• People understanding (though familiarity with historical and cross-cultural examples, for instance) potential for change, and alterative ways of doing things and organizing society.

• People being able to conceptualize complex causation, without being paralyzed.

• Peoples being able to use e empirical understanding of complex causation to identify specific points of intervention.

• People being able to recognize the multitude of factors influencing what they are told about environmental problems (such as asthma), including vested interests, disciplinary bias and blindness, and the sheer limits of knowledge.

• People recognizing and productively dealing with diverse perspectives, avoiding the paralysis often produced by insistence on “balance” and “consensus,” leveraging heterogeneous collectivity and epistemological pluralism.

• People having creative info-seeking practices, and animated analytic capabilities.

• People understanding the value of scientific research, even when inconclusive, or counter-intuitive. Indeed, science needs to be seen as a way to refresh intuitive sensibilities.

• And, finally (for now), people understanding the challenges and values of deliberation and cooperative action.

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