Title: Biofutures: Owning Body Parts and Information
Keywords: Biocommerce, bioethics, information theory, human genome, genetics, public health
Robert Mitchell
Assistant Professor
Department of English
Duke University
Box 90014
Durham, NC 27708
Helen J Burgess
Assistant Professor, English
University of Maryland Baltimore County
1000 Hilltop Circle
Baltimore MD 21250
Phillip J Thurtle
Comparative History of Ideas
University of Washington
Box 354300
Seattle, Washington 98195-4300
Biofutures: Owning Body Parts and Information is a scholarly DVD-ROM that explores key ethical issues that have emerged as a result of rapidly changing relationships between commerce, human tissue, and bioinformatics. Designed to be accessible to academics and educated laypeople, and neither “for” nor “against” biocommerce, the project is designed to provide viewers with the necessary technical and critical knowledge (drawn from the fields of genetics, legal studies, cultural anthropology, and literary study) to address the ethics of biocommerce in a nuanced and knowledgeable fashion.
Biofutures differs from existing approaches to the ethics of biocommerce in two respects. First, we argue that commerce in cell lines and genetic data cannot be understood properly unless analyzed within a more general transformation of the relationships between “property,” “labor,” and “information” that has occurred as a result of the rise of the information economy. Second, we argue that reimagining more socially equitable forms of biocommerce is best facilitated by making use of new forms of commodity and exchange theories recently developed in anthropological and sociological literature. The argument and structure of the project have been developed by co-principals Mitchell, Thurtle, and Burgess, and the scientific and disciplinary accuracy of the project will be vetted by an advisory panel of experts from the fields relevant to this project, including genetics, public health, and law.
Ethical concerns about contemporary relationships between commerce and human genetic material (and human body parts more generally) have received increasing attention in popular news media (e.g., Bereano; Finkel; Monbiot), book publications oriented toward the educated layperson (e.g., Andrews, Kimbrell, Andrews and Nelkin), and articles and books directed toward specialized academic audiences in the fields of philosophy, public health, law, economics, and cultural studies (e.g., Boyle; Doll; Frow; Fox and Swazey; Gold; Harrison; Kevles and Berkowitz; Radinow; Thomas et. al.; Whittaker). Each of these research and publication venues has its strengths and weaknesses: popular news media accounts, for example, reach a broad audience, but frequently employ “shock tactics” to emphasize the “dangers” of combining commerce and science. Specialized academic treatments, by contrast, facilitate sustained and nuanced reflection on particular aspects of contemporary relationships between genetics and commerce, but almost invariably develop this analysis within the constraints of narrowly focused disciplinary concerns. Texts oriented toward a larger layperson audience are able to overcome some of these disciplinary boundaries, but often at the cost of nuanced and accurate accounts of the concrete processes by means of which genetic information and body parts become commodities. Reimagining Biocommerce takes advantage of the DVD-ROM format to maintain the nuance and close analysis of disciplinary texts, while presenting this material in a manner accessible to a larger audience. For instance, the primary layout for a chapter of the DVD-ROM will provide the reader with a single multimedia argument on one important aspect of biocommerce, while greater detail in biotechnological procedures, videos and animations of key procedures, video interviews with key analysts, and references to important work in the field will be provided through hyperlinks for the curious viewer. In addition, our focus on the relationship between commerce and human tissues and genetic information is also motivated by this desire to engage a large audience. While our conclusions have implications for many forms of biocommerce, and while we occasionally discusses other forms of genetic engineering and biocommerce, our focus on human tissue provides the viewer with an accessible way to connect him or herself with the ethical issues under discussion.
Our choice to analyze biocommerce as part of a larger social transformation to an informational economy also reflects our desire to overcome disciplinary boundaries. Existing academic discussions of the ethics of biocommerce have tended to reflect the concerns of specific disciplines: for example, philosophical treatments of these issues tend to ignore, or mention in a cursory fashion, legal or cultural studies approaches to these questions; in similar fashion, economic treatments often ignore philosophical and cultural issues. However, following sociologist Manuel Castells and legal scholar James Boyle, we emphasize that the economic, social, and cultural institutions that determine contemporary developments in biocommerce must be understood not simply within the context of a single disciplinary sphere (for example, philosophy or law), but rather within the broader context of the development of an “information society.” Building on the work of a number of previous scholars, Castells has documented the fundamental transformations of the economy from an industrial to an informational foundation, and the ways in which these changes have altered significantly the connections between information and property. Boyle has been especially attentive to the implications of these changes for biological and genetic information, arguing that commerce in cell lines and genetic data cannot be understood apart from a more general transformation of the relationships between “property” and “information.” We follow him in arguing that one cannot analyze the ethics of biocommerce without at the same time discussing structurally identical issues that emerge in discussions of, for example, copyright infringement and computer software piracy. Moreover, we follow cultural and literary studies authors such as Priscilla Wald and Jose van Dijck in arguing that we need to pay attention to the cultural narratives by means of which courts and the public have attempted to make sense of the negative and positive possibilities of biocommerce. To the extent that public understanding of the ethics of commerce in body parts and genetic information tends to be dominated less by statistics and analysis and more by mass media images (for example, the genetically-determined totalitarian society represented in the film Gattaca), Reimagining Biocommerce performs valuable work by allowing users to reflect on those images as representations of hopes and fears about biocommerce and not as inevitable realities.
While this first set of theoretical premises allows us to analyze scientific, social, economic, and cultural developments that have determined contemporary debates on biocommerce, our second set of theoretical premises outline nuanced alternatives for biological innovation and exchange by making extensive use of recent developments in commodity, consumer, and exchange theory in anthropological , sociological, and literary studies literature (e.g., Appadurai; Bourdieu; Brewer and Porter; Douglas and Isherwood; Frow; Fujimura; Miller; Porter; Rabinow; Shrift; Strathern; Strasser). We focus especially on the supposed distinction between “gift” and “commodity” systems of exchanges, a distinction that has frequently been used to distinguish “good” from “bad” systems of scientific research and technological innovation. We argue that while this distinction does help illuminate some of the processes of exchange that occur in university and corporate labs, it is not always adequate for understanding the complexities of contemporary biocommerce. For example, it has difficulty accommodating an analysis of a patient advocacy group such as PXE, International, which has turned to gene patenting as a means of developing patient rights communities and facilitating research on the genetic disease that afflicts their children.
While our premises are derived in large from the fields of expertise of the co-principals (English, Sociology and Anthropology, and Electronic Media), we include textual and multimedia elements from a large number of fields. Thus, in order to ensure that the content of Reimagining Biocommerce is accurate and balanced, an advisory board of experts from various other fields engaged in the project will vet a version of the project prior to publication. This advisory board currently includes Dr. Jeremy Sugarman (Director, Center for the Study of Medical Ethics and Humanities), Dr. Barbara McGrath (Psychosocial & Community Health and Public Health Genetics, University of Washington), Dr. Gerald T. Nepom (Director, Virginia Mason Research Center), and Elizabeth Rutledge (Research Scientist, Diabetes Research Center Molecular & Genetics Core).
The DVD-ROM format offers us several advantages over purely textual or purely web-based delivery venues. While the foundation of our argument is text based, through the use of clickable items we are able to present evidence in a variety of media, including video interviews with experts (from the fields of genetics, history, law, and anthropology), video footage and computer animations of basic lab genetic procedures essential to biocommerce (for example, the creation of immortal cell lines and transgenic organisms), and clips from popular films that have helped establish public perceptions of the possibilities and dangers of biocommerce. The information presented through these non-textual elements does not simply “illustrate” our textual argument, but is instead an essential part of that argument. So, for example, many important biocommerce intellectual property cases have hinged on the question of the “originality” and “labor” of genetic manipulation, and our video clips and computer animations of lab processes allow viewers to understand the nature of the labor accomplished in genetics labs. In similar fashion, inclusion and analyses of film clips allow us to focus critical attention on the ways in which popular media (for example, films) have presented the dangers and possibilities of biocommerce.
Our use of the DVD-ROM format also allows us to multiply the number of voices and forms of authority within the project. Rather than presenting one to two sentence quotes drawn from interviews, out format allows field experts to explain their points at greater length (while at the same time allowing the viewer to determine how much of that explanation they wish to hear). Almost all of our prospective interviewees already agreed to participate, including: James Boyle (Law, Duke University); Richard Doyle (English, Pennsylvania State University); Paul Edwards (History, University of Wisconsin-Madison); Debra Harry (Executive Director, Indigenous Peoples Council on Biocolonialism); Eduardo Kac (Art, The University of Chicago); Patrick and Sharon Terry (Co-founders, PXE, International). Moreover, our ability to present video footage of actual lab procedures has encouraged several labs to work actively with us (for example, the new Model Systems lab at Duke University), for the directors of these labs see our project as a way of presenting their work directly, and in a very concrete way, to the public.
While the Internet is also, in principle, a viable publication mechanism,
the very large volume of data of this project (slightly under 5 GB) makes
this an unworkable option. Even for viewers with T1 or T2 connections, download
times would be daunting and discouraging. Even more importantly, the fact
that textual elements download much more quickly than image and sound components
almost ensures that viewers would tend to bypass the multimedia portions of
our argument simply because of time constraints, thus effectively undercutting
the premise of the project. Moreover, while the web is best suited for projects
that require constant updating, this is not the case for Reimagining Biocommerce.
Because Reimagining Biocommerce is a thesis-driven analysis of the ethics
of biocommerce, rather than a repository of factual material about biocommerce,
it does not risk being “out of date” in the way that an informational
database might. Thus, while small sections of Reimagining Biocommerce will
be available via a promotional website, the project itself will rely on the
DVD-ROM format.
To date, relatively little work in the humanities has been presented in DVD-ROMs,
but this medium promises to become an increasingly important format for
academic thesis-driven work (especially for topics that require the inclusion
of multi-media components, such as film studies and linguistics). Markley
et. al.’s
recent DVD-ROM Red Planet: Scientific and Cultural Encounters
with Mars (University of Pennsylvania Press, 2001) has demonstrated
that such a project can be accessible to a wide audience, while at the same
time thesis-driven and academically sound. Moreover, insofar as one of the
co-principals for Biofutures (Helen Burgess) was also a co-author
of Red Planet, we are able to build upon, as well as establish continuity
with, elements of this earlier DVD-ROM.
Biofutures seeks to add a new theoretical perspective to public debates about the ethics of biocommerce. As with all thesis-driven academic research products, our project will be assessed, in the final analysis, through journal reviews by the communities of scholars concerned with bioethics (in the fields of philosophy, law, economics, political science, and literary study). However, the review process for Biofutures is in fact both more intensive and extensive than is the case for most print monographs, for our use of an interdisciplinary advisory board allows review of the argument and content of the project before it reaches the publication stage. Our advisory board is charged with the mission of ensuring the accuracy, but also general accessibility, of our project.