Susan Lindee

Is cystic fibrosis genetic medicine's canary?

In 1989 the gene that causes cystic fibrosis (CF) was identified in a search accompanied by intense anticipation that the gene, once discovered, would lead rapidly to gene therapy. Many hoped that the disease would effectively disappear. Those affected were going to inhale vectors packed with functioning genes, which would go immediately to work in the lungs. It was a bewitching image, repeatedly invoked in both scientific and popular texts. Gene therapy clinical trials were carried out with a range of strategies and occasionally success seemed close, but by 1996 the idea that gene therapy for CF would quickly provide a cure was being abandoned by the communities engaged with treatment and research. While conventional wisdom holds that the death of Jesse Gelsinger in an unrelated gene therapy trial in 1999 produced new skepticism about gene therapy, the CF story suggests a different trajectory, and some different lessons. This article considers the rise and fall of gene therapy for CF and suggests that CF may provide a particularly compelling case study of a failed genomic technology, perhaps even of a medical “canary.” The story of CF might be a kind of warning to us that genetic medicine may create as many problems as it solves, and that moving forward constructively with these techniques and practices requires many kinds of right information, not just about biology, but also about values, priorities, market forces, uncertainty, and consumer choice.

Technogenesis: Aesthetic Dimensions of Art and Biotechnology

From material processes to elusive patterns, artists and scientists seek models of explanation. Sometimes illusionally evocative, sometimes rigorously formulaic, and at other times sculpturally bounded, these conceptualizing tools have historically linked art and science. Bring to the fore new technologies, digitally driven, and a vast array of alternative schemes become possibilities. High resolution images of cells, scanned helical DNA structures and synaptic neural connections can presently be viewed in real time. Add to the mix embodied transgenic life forms and fabricated animal models, and our conceptualizing tools expand the possibilities for dimensional invention. The accelerating dynamic between cultural and genetic evolution produces what can be termed a co-evolution between technical knowledge and living matter. And it is this co-evolution between technical expertise and animate matter we term technogenesis. 2 In other terms, technogenesis is the way in which the interactions between technology and biology impact our understanding of how nature exists, or would be, conceived and reconfigured in the future. But how do art practices and the life sciences rely on the efficacy of images? And what part do these images play in the acquisition, comprehension, dissemination and even funding of visual or scientific study? In what ways do images reflect the socio/ economic and cultural conditions of producing knowledge? Located somewhere between illusion, proof and cognitive projection, images, hence, become critical fictions operating within the cultural imaginary. They often traverse contested territories situated elsewhere on the axis between fact and fiction. These visualizing models, ubiquitously employed by artists, scientists, designers, corporate advertisers, journalists and politicians, clarify, mislead, aggrandize, stimulate and document. In brief, they are representations embedded in social structures, policy decisions and commercial ventures. As aesthetic devices such images perform their semiotic function activating thought and emotion by their salient powers of communication and circumscribed belief.

Human genetics after the bomb: Archives, clinics, proving grounds and board rooms.

In this paper I track the history of post-1945 human genetics and genomics emphasizing the importance of ideas about risk to the scientific study and medical management of human heredity. Drawing on my own scholarship as it is refracted through important new work by other scholars both junior and senior, I explore how radiation risk and then later disease risk mattered to the development of genetics and genomics, particularly in the United States. In this context I excavate one of the central ironies of post-war human genetics: while studies of DNA as the origin and cause of diseases have been lavishly supported by public institutions and private investment around the world, the day-to-day labor of intensive clinical innovation has played a far more important role in the actual human experience of genetic disease and genetic risk for affected families. This has implications for the archival record, where clinical interactions are less readily accessible to historians. This paper then suggests that modern genomics grew out of radiation risk; that it was and remains a risk assessment science; that it is temporally embedded as a form of both prediction and historical reconstruction; and that it has become a big business focused more on risk and prediction (which can be readily marketed) than on effective clinical intervention.

Survivors and scientists: Hiroshima, Fukushima, and the Radiation Effects Research Foundation, 1975–2014

In this article, I reflect on the Radiation Effects Research Foundation and its ongoing studies of long-term radiation risk. Originally called the Atomic Bomb Casualty Commission (1947–1975), the Radiation Effects Research Foundation has carried out epidemiological research tracking the biomedical effects of radiation at Hiroshima and Nagasaki for almost 70 years. Radiation Effects Research Foundation scientists also played a key role in the assessment of populations exposed at Chernobyl and are now embarking on studies of workers at the Fukushima Daiichi Nuclear Power Plant. I examine the role of estimating dosimetry in post-disaster epidemiology, highlight how national identity and citizenship have mattered in radiation risk networks, and track how participants interpreted the relationships between nuclear weapons and nuclear energy. Industrial interests in Japan and the United States sought to draw a sharp line between the risks of nuclear war and the risks of nuclear power, but the work of the Radiation Effects Research Foundation (which became the basis of worker protection standards for the industry) and the activism of atomic bomb survivors have drawn these two nuclear domains together. This is so particularly in the wake of the Fukushima disaster, Japan’s ‘third atomic bombing’. The Radiation Effects Research Foundation is therefore a critical node in a complex global network of scientific institutions that adjudicate radiation risk and proclaim when it is present and when absent. Its history, I suggest, can illuminate some properties of modern disasters and the many sciences that engage with them.

Crazy Quilt: Cloning Collaborations

Human Cloning in the Media: From Science Fiction to Science Practice, by Joan Haran, Jenny Kitzinger, Maureen McNeil and Kate O’Riordan, London and New York: Routledge, Genetics and Society series edited by Paul Atkinson. At some point a few years back, while trying to reconstruct the history of genetic disease in the United States, I began to think of the science of human genetics as pieced together from the experiences of people in many different social locations. At the time I was working on a chapter exploring genetics research during the 1960s among the Pennsylvania Amish. Perhaps I was driving around too much in Lancaster County, where magnificent Amish quilts fill shop windows and clothes lines, because somehow quilts became ‘good to think with’ around questions of genetic science. Female productions, often collaborative, often involving a life narrative, they are forms of low art that can also move up, into galleries and museums. Quilts bring together fabrics from many sources (sheep’s wool included) which are subsumed under a broader pattern, and in that pattern given a single meaning. Their seams are obvious, right there on the surface, if you bother to look, but the broader pattern is what matters to most observers. Human genetic knowledge, too, can move and migrate, from patients and affected families into the pages of elite scientific journals. It involves pregnant women, kinship networks, suffering, laboratory technologies and the messy chaos of embodiment. Producing it requires complex collaborations between scientists, country doctors, parents, patients and legislators. It would not be safe for the historian trying to understand these collaborations to assume that the geneticist or physician was the only one conveying information. When you started paying attention, folk knowledge and common experience were threaded through the textual record of the American Journal of Human Genetics. Reading this collaborative text by four scholars in media studies, science studies and gender studies, a person inclined to favour quilt metaphors might conclude that human cloning is a crazy quilt. The uncanny, the practical, the mundane and the profound are Science as Culture Vol. 17, No. 4, 479–482, December 2008

Experimental wounds: science and violence in mid-century America.

This paper explores the scientific production of experimental wounds, suggesting that these scientific research programs illuminate the consequences of the historical relationship between technical knowledge production and the states monopoly on violence. Language: en

Patrons of the human experience : a history of the Wenner-Gren Foundation for Anthropological Research, 1941–2016

The Wenner-Gren Foundation for Anthropological Research has played a critical but little-understood role in the development of the social and biological sciences since 1941. For anthropology particularly, its programs have often helped redefine scholarly priorities and research trajectories. Its grants to doctoral students have functioned as an important early sign of scholarly legitimacy, a mark of belonging to the profession. The foundation’s history also reflects general transformations in scientific patronage as new landscapes of federal, military, and private funding reconfigured opportunities in the social sciences. In this account we track the evolution of the foundation in tandem with the evolution of anthropology during a period of dramatic change after 1941, looking at the Second World War context from which the foundation emerged and the ideas and experiences of those who played a key role in this history. We examine the long-term influence of a philanthropic foundation on the postwar emergence...

Commentary: A Return to Origins

The emergence of an environmentally oriented public health model of genomics, chronicled so adroitly in the essays collected here, might almost be seen as a return to origins: Scientific human genetics in the decades after 1945 engaged in epidemiological risk assessment relevant to public health and state order and garnered significant public support based not on the discovery of individual disease genes (though this occurred) but on its profound relevance to global radiation risk during the cold war. Human genetics in the postwar period was structured as a risk assessment science. The first motivation to map the genome, proposed in the 1950s, was to ascertain “normal” mutation rates in human populations. In the 1980s, the first agency to actually begin to try to map the complete human genome was the U.S. Department of Energy (DoE), the successor agency to the Atomic Energy Commission (AEC) and the overseer of Los Alamos National Laboratory, where the mapping efforts began. When the DoE began its genome project, normal mutation rates were still unknown, despite decades of AEC-funded field studies with special populations in Japan, Africa, and Latin America. They were unknown because most mutations could not be discerned through epidemiology, which could quantify only what was morphologically visible. The Human Genome Project (HGP) had its origins as a risk assessment science focused on population health and environmental risk. It was only when the National Institutes of Health took the genome project over from the DoE that the sheen of dramatic medical payoff began to be invoked to justify the cost. The cold war was waning, radiation risk could perhaps no longer justify massive public expenditure, and the new DNA technologies involved were sweet and seductive—fun, we might say. The new HGP seemed to promise a biotech windfall, supported by public largesse. Industry was supportive, to say the least. In the last 10 or 15 years, as this volume suggests, this origins story seems to have been revived with a twist. The articles here help us understand how and why genomics has been reconfigured in cognate form as a resource for public health, related not to radiation but to other kinds of environmental toxins and agents and to larger public health problems of heart disease, cancer, infectious disease, and chronic illness. Genomic information is now increasingly understood as both personal and public, specific to the individual and as a guide to public health policy. This is true in both the industrialized scientific capitals and in the island worlds

Review of Patrick Tierney, Darkness in El Dorado

More than once as the controversy over this book unfolded reporters and others told me the number of footnotes in Tierneys chapter on the measles outbreak: 147. I have now tallied the total number of footnores in the entire book including the appendix (1,599). Such numbers seem to interst people. It is considerable more difficult to quantify the evidentiary force and legitimacy of these footnores. My own assessment is perhaps suggested by the fact that I have rewritten this review several times in an effort to make it difficult for anyone to extract a decontextualized endorsement on some future web page or book jacket. This accounts for the somewhat stilted style, for which I apologize.

The cultural powers of the gene — identity, destiny and the social meaning of heredity

The contemporary gene seems, in popular sources, to determine fate, identity and social place. In this paper, I explore how images of heredity and DNA facilitate institutional goals — for employers, schools and county — and how they define individuals as simply DNA writ large. I suggest that DNA functions as the contemporary equivalent of the Christian soul — containing the essence of the individual, and conferring genetic “immortality”.