- Karen-Sue Taussig
Mobilizing Life: Citizenship, Subjectivity, and the Quest for a Molecular Medical Clinic
This paper, based on ethnographic research in the United States, examines scientific and popular renderings of molecular therapies as a site for the projection of cultural fantasies involving the desire for human perfectibility and fears of degeneration. Such practices as gene therapy, pharmacogenomics, and stem-cell therapies promise transformative interventions into human life and health. The recognition of the potential flexibility of biological material and of life itself has facilitated the establishment of a new set of research efforts and allied commercial ventures seeking to transform such potential into medical therapies. I will argue that in the gap between the contemporary reality of available therapies and the potential of future therapies we find diverse efforts at imagining and building particular futures. Here significant work is being undertaken to create the material, political, economic, and conceptual means deemed necessary for facilitating the realization of a molecular medical clinic. At the heart of this work is the constitution of the ambiguously human as a biological resource for future humanness under the terms of human health and well-being. This paper focuses on everyday practices aimed at creating citizens knowledgeable about genomics to examine the cultural fantasies embedded in the conceptual work undertaken by scientists and others as they work to elaborate a human future enhanced by a new molecular medical toolkit.
- Simon Cole
Respect for Private Life":
How Human Rights Discourse Retarded the Inexorable Expansion
of DNA Databases in S. & Marper v. United Kingdom
In 2008, the ongoing debate over the inclusiveness of the DNA databases amassed by the world's industrialized nations—and by many "transitional" nations as well—for the purposes of criminal identification seemed poised to come to rest on what might be called the "arrestee compromise." This was the same compromise that had been reached by virtually every nation for its fingerprint databases: most "ordinary" citizens remained free of inclusion in such a database, but mere suspicion of criminal behavior—arrest—was sufficient to warrant a diminished privacy interest that justified permanent inclusion of the individual’s biometric data in a state-sponsored database.
Civil libertarians argued that conviction, rather than arrest, should be required to trigger inclusion. Some legal scholars, and the technology’s inventor, took the seemingly perverse position that universal inclusion was necessary to blunt the discriminatory effects of the growing databases, while genetic watchdog organizations took the seemingly quixotic view that no databases should be compiled at all. By 2008, it seemed clear to most scholars, myself included, where this debate was headed: toward the arrestee compromise. In large measure, this was because of the apparent failure of what seemed at the time the only rhetorical strategy available to opponents of database expansion: the embrace of both reductionism and "genetic exceptionalism" in an effort to rally public concern about state control of genetic information.
This apparent failure was both political and legal: early legal cases on the issue suggested that courts were unlikely to find a privacy right that protected genetic information from archival in criminal identification databases. At the time, it seemed difficult to conceive how any rhetorical strategy based on individual privacy rights could overcome the compelling utilitarian logic that called for making databases as inclusive as tolerable.
In 2008, however, this seemingly inexorable trend toward arrestee databases was abruptly—and, to most, unexpectedly—halted by the European Court of Human Rights. In the case, S. & Marper v. U.K., the Court ruled that the world’s largest DNA database, the UK National DNA Database, was in violation of the Convention for the Protection of Human Rights and Fundamental Freedoms, for its permanent archiving and perpetual searching of the genetic profiles of two individuals, one a juvenile, who had been arrested for, but never convicted of, crimes.
How did a human rights discourse succeed in stopping the seemingly inexorable expansion of criminal DNA databases, where all previous arguments based on privacy rights, racial discrimination, and genetic exceptionalism had failed? Based on a close reading of the Marper decision in the European Court of Human Rights, the overturned ruling in the British House of Lords, and the seminal U.S. decision on database expansion, U.S. v. Kincaid, this paper will explore how the new genetic sciences and technology have affected the discourse of human rights. Particular attention will be paid to the notion of the "bounded individual," as defined by a one-to-one correspondence between an individual and a supposed "unique"—or not-so-unique—genetic identifier and to the notion that body surfaces have a significant and intimate relationship with some interior personality that has some right to some protection from the inquiring gaze of the state. The paper will explore what, if anything, the more intense thinking about the nature of genetic science and technology required by a science and technology studies approach might contribute to our existing thinking about the nature of human rights.
- Miriam Ticktin
Three intersections of science, technology and human rights: biology, borders and "humanimals"
My paper will trace three moments in my own research where I have seen the new sciences and technology intersecting with human rights discourses and practices, and in particular, with the notion of the human that human rights purport to protect. The idea is to map out a larger field of research, to open it up for discussion, not to give any definitive answers.
- I will discuss the impact of new ideas of biology, which come to play in claims to asylum; that is, I will consider how advances in science and medicine have come to change the way claims to rights are understood and adjudicated. In the cases I have studied in the US and France, this comes from the recognition that bodies are increasingly understood in biological terms: whether through biometrics or genetic testing. The biology I speak of is a contested and changing field; it is information – like the map of the human genome, the software used to map it, or the patents that protect it – and material or physical substrate, where these two are co-constituted. These notions of biology change the terms in which one must make claims, for both asylum-seekers and gatekeepers.
- Next, I will think about how new surveillance technologies have changed the way borders are understood and patrolled – and literally, what they are; this has a profound impact on notions of citizenship, and again, on the ability to make rights claims. If the border is no longer a clear territorial demarcation, but one that moves along with surveillance technologies, what does this mean about making claims to rights, and about the people who claim rights? I draw on the example of the new European Union border, which is gradually being pushed back into North Africa; the Europeans have conscripted Moroccans, Algerians and Libyans to act as the policemen of Europe, and have given them access to new technologies for this purpose. The argument is that this divides humanity into new categories – rather than citizens and non-citizens, or citizens and foreigners, I look to Balibar’s argument about life and death zones.
- This last section takes me into very new ideas, about the borders of the human, and how neuroscience research blurs the borders between human and animal, thereby challenging what/who we protect when we protect "human rights."
- Jennifer A. Hamilton
Human Rights and Bioethics in a Genomic Age
In this paper, I examine the contested field of human rights through the lens of developments in the genomic sciences. Much of the recent scholarship investigating the relationships between human rights and genomics focuses on questions of whether or not, and the potential ways in which, scientific innovation might erode extant human rights frameworks. In this paper, I shift the focus from these concerns and take as my point of departure the productive tension between human rights law and bioethics. More specifically, I focus on in terms of examining the place of human rights in an era of regulatory regimes that are often outside of, or only partially located in, the realm of law. Thus, the orienting question here is not how the genomic sciences can or cannot help to support human rights, but rather how, and in which moments, human rights laws intersect with other semi- or extra- legal ethical regimes. How are human rights conceptualized in and through these regimes? How and when are discourses of human rights deployed in bioethics and to what effect?
The substantive focus of this presentation is an examination of two case studies:
- The Case of the Genetic Ancestor: Genocide and Consumer Genomics
- The Vitality of Difference: Law, Ethics, and Indigeneity in a Genomic World
- Jonathan Metzl
The Protest Psychosis
Over the past decade, neuroscience has made significant progress toward
understanding the neurobiological basis of schizophrenia. Yet, popular
attitudes about schizophrenia remain largely unaffected by scientific
advances. Surveys of popular opinion consistently link schizophrenia,
not to brain biology, but to a host of social misperceptions. Chief
among these is the association between schizophrenia and violence. For
instance, the percentage of the population who view persons with
schizophrenia as being "dangerous or unpredictable" more than
doubled over the latter half of the twentieth century, even though
research shows that, far from posing a threat to others, people
diagnosed with schizophrenia have victimization rates 65 to 130 percent
higher than those of the general public.
This paper explores the historical disconnect between science and
society regarding beliefs about schizophrenia. It describes the
surprising and often inadvertent ways in which American beliefs about
the criminality of schizophrenia emerged in the 1960s- and 1970s in
context of a larger set of conversations about race and social justice.
Over this vital twenty-year time period, research about aberrations in
brain biology unintentionally combined with growing cultural anxieties
about civil rights. Meanwhile, reports about new "psychochemical"
technologies of symptom control merged with concerns about the
"uncontrolled" nature of urban unrest. As these historical contingencies evolved, the American public, and at times members of the
scientific community, increasingly described schizophrenia as a violent
social disease, even as biomedicine argued that schizophrenia was a
disorder of biological brain function. The paper's larger goal is to
argue that stigmatizations of psychiatric disorders need be historically understood if they are to be effectively treated in the present day.
- Noa Vaisman
Legal Subjectivities, Ontologies and Genetic Truths: The Complex Struggle for Human Rights in Post-Dictatorship Argentina
In August 2009 the Supreme Court of Argentina pronounced its position regarding the verification of identity using genetic material (shed DNA) found on personal objects. The Court’s statement was presented in response to the case of Guillermo Prieto, whose identity had been in question since the early 1980s. The young adult is, in all likelihood, a child of disappeared who was himself disappeared as an infant by the military regime that ruled Argentina between 1976 and 1983. Separated from his biological kin and his genetic past his identity was altered when he was inscribed as the natural offspring of a member of the Armed Forces and his wife.
In 1982 the case first arrived in the courts but due to the refusal of the appropriating couple and later the individual himself Guillermo’s identity was never verified. Until 2006 identification of genetic ties was based on DNA extracted from blood samples, however, in recent years other techniques using shed DNA that was left on clothes and other personal objects were developed. The use of these techniques was debated by the Magistrates in 2009. The Court’s statement ratifies its decision from 2003 against compulsory blood tests but allows for DNA identity tests to be carried out on DNA extracted from tissue found on objects in the home of the victim. This legal decision raises many questions, specifically: What are an individual’s rights to identity and to his DNA? How are legal subjectivities constructed and in what ways are they different from the individual’s understanding of his identity? What does this decision tell us about justice and the demand for accountability and truth in the context of post-dictatorship social rebuilding? In this paper I address the above questions using ethnographic material and legal documents from the Supreme Court of Argentina.
- Joseph Masco
This paper examines the U.S. effort to re-conceptualize public health as a form of counterterrorism since 2001. Focusing on the future threats of emerging diseases and bioterrorism, this new notion of "biosecurity" prioritizes apocalyptic possibilities (weaponized smallpox, ebola, anthrax, or designer viruses) over the day-to-day health concerns of a population. The paper outlines the new infrastructure of biodefense laboratories, as well as the shifting logics at the National Institute of Health and the Center for Disease Control in support of the "war on terror". Biosecurity is predicated on a "trickle-down" logic of research, in which combating as yet unrealized militarized dangers promises not only a "bug to drug in 24 hours" state response to bioterror, but along the way cures to common ailments. The paper interrogates this normalization of biowarfare as the core concern of public health, and contextualizes these logics within the evolution of the post-World War II security state apparatus. Through an analysis of recent bioterrorism exercises, the paper ultimately critiques this notion of "preparedness" and argues for the necessity of uninventing biosecurity.
- Joan H. Fujimura
Different Differences: The use of ancestry versus race in biomedical human genetic research
This article presents findings from our ethnographic research on biomedical scientistsÕ studies of human genetic variation and common complex diseases. Through a close examination of the socio-technical work involved in genome-wide association studies (GWAS), we discuss whether, how, and when notions of race and ethnicity are or are not involved in the research processes. We analyze how researchers produce simultaneously different kinds of populations and population differences. We find some geneticists who have invented a statistical genetics method that they use specifically to avoid using notions of race and ethnicity in their research. Their method, encoded in a software algorithm, allows them to operationalize their concept of "genetic ancestry" without resorting to such notions. We present an ethnography of the construction and implementation of the software technology, and discuss its implications for debates and policies around the use of race in genetics research. We demonstrate that the production and use of their method involves a dynamic and fluid assemblage of actors responding to various disciplinary and sociopolitical contexts and concerns. This assemblage also includes particular discourses of human history and human geography as they become entangled with research on genetic markers and disease. We introduce the concept of Ògenome geographyÓ to theorize how researchers studying human genetic variation ÒlocateÓ stretches of DNA in different places and times. The concept of genetic ancestry and the practice of genome geography rely on old discourses, but they also incorporate new technologies, infrastructures, and political-scientific commitments that may change some of our institutional and cultural forms and frames around notions of difference and similarity. We also discuss downstream uses of the technology, which may work against change, as some biomedical scientists as well as the media interpret genetic ancestry in ways that highlight the slipperiness of genome geography and the tenacity of race concepts.
This paper is joint with Ramya Rajagopalan and is based on our larger research project on the use of populations in human genetic variation studies with our colleagues Kjell Doksum and Pilar Ossorio.
- Paul Vanouse
I am an artist working in emerging technological media forms. My work explores intersections of big-science and popular culture—addressing complex issues raised by varied new technologies through these very technologies. Unpacking the visual rhetoric, hyperbole, slippery metaphors and mis-directions employed when marketing these new technologies to the general public is key to my practice. My recent artworks are actual molecular biology experiments (generally performed live) that challenge "genome-hype" and confront issues surrounding DNA Fingerprinting.
In this talk, I will discuss varied recent projects alongside the scientific/legal/social issues that they seek to address. For instance, Relative Velocity Inscription Device (2002), is an artistic experiment in which I literally race family members’ skin color gene DNA against one another in a DNA sequencing gel. The project anticipated a reterritorialization of racism from the surface of the body (skin) to its inner depths (DNA) following the 2000 announcement by Human Genome scientists that there is "no such thing as race". It posits the question, "can racism exist, when race does not", and suggests slippery logics by which molecular racism might gain traction.
In his influential book Science In Action, Bruno Latour describes the difficulty of questioning accepted facts, technologies and statements—equating this process with opening "Pandora’s Box", and requiring the dissenter to construct a "counter laboratory" to overcome them. My recent work has sought to do just this: to produce counter arguments to increasingly accepted statements of fact in the realm of genomic technology—particularly as they construct racial and legal identities. The esoteric nature of DNA imaging, analysis has hampered discussion of the numerous issues raised by its implementation in the social milieu. I’ve sought to perform my work live, in spaces of public display, to bring this discussion to non-expert audiences who are often under-informed about such contemporary issues that have major social implications.