Books by Stephen Hilgartner
The Handbook provides an essential resource at the interface of Genomics, Health and Society, and... more The Handbook provides an essential resource at the interface of Genomics, Health and Society, and forms a crucial research tool for both new students and established scholars across biomedicine and social sciences. Building from and extending the first Routledge Handbook of Genetics and Society, the book offers a comprehensive introduction to pivotal themes within the field, an overview of the current state of the art knowledge on genomics, science and society, and an outline of emerging areas of research.
Key themes addressed include the way genomic based DNA technologies have become incorporated into diverse arenas of clinical practice and research whilst also extending beyond the clinic; the role of genomics in contemporary ‘bioeconomies’; how challenges in the governance of medical genomics can both reconfigure and stabilise regulatory processes and jurisdictional boundaries; how questions of diversity and justice are situated across different national and transnational terrains of genomic research; and how genomics informs – and is shaped by – developments in fields such as epigenetics, synthetic biology, stem cell, microbial and animal model research.
Presenting cutting edge research from leading social science scholars, the Handbook provides a unique and important contribution to the field. It brings a rich and varied cross disciplinary social science perspective that engages with both the history and contemporary context of genomics and ‘post-genomics’, and considers the now global and transnational terrain in which these developments are unfolding.
MIT Press, 2017
The rise of genomics engendered intense struggle over the control of knowledge. In Reordering Lif... more The rise of genomics engendered intense struggle over the control of knowledge. In Reordering Life, Stephen Hilgartner examines the “genomics revolution” and develops a novel approach to studying the dynamics of change in knowledge and control. Hilgartner focuses on the Human Genome Project (HGP)—the symbolic and scientific centerpiece of the emerging field—showing how problems of governance arose in concert with new knowledge and technology. Using a theoretical framework that analyzes “knowledge control regimes,” Hilgartner investigates change in how control was secured, contested, allocated, resisted, justified, and reshaped as biological knowledge was transformed. Beyond illuminating genomics, Reordering Life sheds new light on broader issues about secrecy and openness in science, data access and ownership, and the politics of research communities.
Drawing on real-time interviews and observations made during the HGP, Reordering Life describes the sociotechnical challenges and contentious issues that the genomics community faced throughout the project. Hilgartner analyzes how laboratories control access to data, biomaterials, plans, preliminary results, and rumors; compares conflicting visions of how to impose coordinating mechanisms; examines the repeated destabilization and restabilization of the regimes governing genome databases; and examines the fierce competition between the publicly funded HGP and the private company Celera Genomics. The result is at once a path-breaking study of a self-consciously revolutionary science, and a provocative analysis of how knowledge and control are reconfigured during transformative scientific change.
In the life sciences and beyond, new developments in science and technology and the creation of n... more In the life sciences and beyond, new developments in science and technology and the creation of new social orders go hand in hand. In short, science and society are simultaneously and reciprocally coproduced and changed. Scientific research not only produces new knowledge and technological systems but also constitutes new forms of expertise and contributes to the emergence of new modes of living and new forms of exchange. These dynamic processes are tightly connected to significant redistributions of wealth and power, and they sometimes threaten and sometimes enhance democracy. Understanding these phenomena poses important intellectual and normative challenges: neither traditional social sciences nor prevailing modes of democratic governance have fully grappled with the deep and growing significance of knowledge-making in twenty-first century politics and markets.
Building on new work in science and technology studies (STS), this book advances the systematic analysis of the coproduction of knowledge and power in contemporary societies. Using case studies in the new life sciences, supplemented with cases on informatics and other topics such as climate science, this book presents a theoretical framing of coproduction processes while also providing detailed empirical analyses and nuanced comparative work.
Contents: Introduction, Stephen Hilgartner, Clark A. Miller, and Rob Hagendijk 2. Biology Denatured: The public-private lives of lively things, David Winickoff 3. Imagining the Unimaginable: Making a synthetic biology revolution plausible, Stephen Hilgartner 4. Courting Innovation: The constitution(s) of Indian biomedicine, Kaushik Sunder Rajan 5. Co-Producing Knowledge and Political Legitimacy: Comparing life form patent controversies in Europe and the United States, Shobita Parthasarathy 6. Dispute Settlement and Legitimacy of the World Trade Organization: Adjudicating knowledge claims in the Brazil – USA cotton case, Arthur Daemmrich 7. Co-Production and Democratizing Global Environmental Expertise: The IPPC and adaptation to climate change, Silke Beck and Tim Forsyth 8. Governing Emerging Technologies – The need to think outside the (black) box, Pierre-Benoit Joly 9. To Bind or Not Bind? European Ethics as Soft Law, Mariachiara Tallacchini 10. Sociotechnical Imaginaries, Digital Health Information, and the Reimaging of the Citizen-Patients, Ulrike Felt 11. Knowledge and Democracy: The epistemics of self-governance, Clark A. Miller 12. Sense and Sensibility: Science, society, and politics as co-production, Rob Hagendijk.
Behind the headlines of our time stands an unobtrusive army of science advisors. Panels of scient... more Behind the headlines of our time stands an unobtrusive army of science advisors. Panels of scientific, medical, and engineering experts evaluate the safety of the food we eat, the drugs we take, and the cars we drive. But despite the enormous influence of science advice, its authority is often problematic, and struggles over expert advice are thus a crucial aspect of contemporary politics. Science on Stage is a theoretically informed and empirically grounded study of the social process through which the credibility of expert advice is produced, challenged, and sustained.
Papers by Stephen Hilgartner
Chats Between Bots: A Real-World Experiment in Writing, Recursion, and Reflexivity, 2024
The abstract and keywords below were produced by a publicly available chatbot (setting aside this... more The abstract and keywords below were produced by a publicly available chatbot (setting aside this first, italicized portion). The paper was inspired by a series of unsolicited emails to a professor from prospective PhD students. Suspecting some of the emails were chatbot-generated, he decided to undertake further investigation. This paper presents a reflexive exploration of large language models (LLMs) by engaging a chatbot in a recursive dialogue on AI's social, ethical, and political dimensions. The study probes how LLMs, such as chatbots, mediate academic and public discourse, emphasizing the potential shifts in knowledge production, authorship, and authority. By experimenting with chatbot-generated text, the author assesses the recursive structures and potential biases that arise when AI participates in human communication systems. The findings reflect on the ambiguous boundaries of authorship and intellectual integrity in an age of AIassisted writing, raising questions about societal implications and the efficacy of governing such technology. This work underscores the complex dynamics of AI-mediated communication, proposing that more nuanced forms of oversight and ethical consideration are essential as LLMs continue to scale within knowledge systems.
JAMA, 2002
and resources, researchers may unknowingly build on something less than the total accumulation of... more and resources, researchers may unknowingly build on something less than the total accumulation of scientific knowledge or work on problems already solved. 1 However, a number of instances of data withholding (defining data to include the full range of research results, techniques, and materials useful in future investigations and withholding as the failure to share such published data) have been reported. 2-7 A 1994-1995 survey of academic life scientists found that 34% of respondents were denied research results requested from a fellow university scientist in the previous 3 years, and 8.9% said they had denied a request from another university scientist for access to research results. 8 Weinberg 9 asserts that secrecy is more common in genetics and particularly human genetics than in other areas. Reasons may include the increased scientific competitiveness of the field and the opportunities for commercial applications. 10 Research has shown that scientists who reported conducting research on goals similar to that of the Human Genome Project (HGP) were more likely to deny requests for information, data, and materials than were other life scientists. 8
American Journal of Bioethics, 2018
Intellectual property policy tends to treat innovation as a rising tide that raises all boats (in... more Intellectual property policy tends to treat innovation as a rising tide that raises all boats (in the aggregate and long run), and increasing the rate of innovation is seen as the main policy objective. However, research in science and technology studies (STS) has shown that technology does not simply advance in a teleological way toward optimal designs but is the outcome of negotiations that include normative questions about the desirability of alternative solutions (Bijker, Hughes, and Pinch 1987). In such negotiations, managerial rights over patented technology can radiate outward from the original invention, yielding not only market power but also “configuration power”—the capacity to influence the specific arrangements of technical components, humans and organizations, and social roles and relationships that make up sociotechnical systems. As a result, patent holders can play a significant role in shaping the technological and social regimes that structure ways of life—a fact with implications for governance, justice, and accountability. Genomic technologies provide some examples.
The Human Genome Project (HGP) is often described as the first large-scale scientific project to ... more The Human Genome Project (HGP) is often described as the first large-scale scientific project to incorporate investigation of its own ethical and social dimensions into the “core” research itself. As the U.S. strand of the HGP took shape at the close of the 1980s, it instituted a program on “Ethical, Legal, and Social Implications,” or ELSI. This “ambitious experiment” (Juengst 1994, 121), sometimes said to be more novel than
the genome mapping and sequencing project itself, advanced what became known as the “‘ELSI hypothesis’: that combining scientific research funding with adequate support for complementary research and public deliberation on the uses of new knowledge will help our social policies about science evolve in a well-informed way” (National Institutes of Health 1993, 48). As the words implications and uses imply, the U.S. ELSI program tended to focus on downstream “impacts” rather than on the shaping of genome knowledge and technology itself. The European counterpart to ELSI used the acronym ELSA, with the “A” denoting aspects , to avoid the deterministic and narrow connotations of the term implications . (Below, we will use the term “ELS programs” when referring to these programs as a category; specific programs will retain their original designation.)
The ELS “experiment” continues today; by 2013, the U.S. ELSI program had dispersed $317 million of research support (McEwen et al. 2014). In many other countries, ELS programs were established (more or less temporarily, as in the Austrian case) at national levels, including in Austria, Canada, Finland, Germany, the Netherlands, Norway, the United Kingdom, South Korea, and Switzerland, and also at the EU level
(Chadwick and Zwart 2013; Zwart, Landeweerd, and van Rooij 2014). 1 The influence of the ELS model extends far beyond genomics. It has served as a model in other fields of emerging science and technology, including nano and synthetic biology, where actors have sought to anticipate and manage societal issues, reassure publics, and maintain political legitimacy. 2 It has also been incorporated into methodologies of technology assessment and societal impact assessment (Kreissl, Fritz, and Ostermeier 2015). Advocates of these latter approaches often hasten to distinguish these programs from U.S. ELSI. But even if we treat these newer formations of engagement with societal, regulatory,
and ethical aspects of science and technology as genuinely new, the emergence of ELS programs in genomics nevertheless was a touchstone in their development. Moreover, ELS programs figure importantly in the governance of emerging science and technology, shaping scholarly fields on the one hand, and governance agendas on the other. As McEwen et al. (2014, 491) argue, “the most consequential impact of ELSI research” may consist of subtle yet significant changes in the cultural milieu in which
genomics research is conducted and implemented and in the use of scientific evidence in decision making.
The varied incarnations of the ELS model, including in such areas as nano and synthetic biology, represent a notable development in science-society relations: deploying “ethics” programs as subsidiary components of larger technoscientific projects. This form of ethics corresponds neither to an academic field nor to rational reflection on the foundations of moral life but is a new governance tool built on the prior institutionalization of “bioethics” as a way to manage problems of moral ambiguity and disagreement in biomedicine. The ELS model, emphatically an interdisciplinary one, was also implicated in
changes in the social sciences, for example, by drawing scholars to the study of normative questions associated with major technoscientific initiatives. Over the years, many types of scholars have hitched their wagons to these programs and/or tried to push them in new directions. As a result, ELS programs have typically included a heterogeneous
collection of disciplines and diverse research agendas. Science and technology studies (STS) scholars have often been part of the mix. These programs have presented opportunities, not least by providing funding to STS researchers (ourselves included) and by making participation in these enterprises possible. STS scholars have engaged
with these programs in a variety of contributory and critical modes, which we will review below. Others again have worked to reshape these programs by bringing STS sensibilities under their remit. They have also participated in ELS work with the goal of inventing new roles for the social sciences in the governance of emerging technology. At other times, they have treated ELS activities as a site not only for investigating traditional topics of STS research, such as the construction of scientific facts and technology but also for symmetrical analysis of the interplay of knowledge and conceptions of public benefit, right reason, and democratic order.
Gene Editing, Law, and the Environment: Life Beyond the Human, edited by Irus Braverman, Routledge, 2017.., 2017
This paper--an Afterword commenting on the papers in the volume--examines the visions of governan... more This paper--an Afterword commenting on the papers in the volume--examines the visions of governance and modes of reasoning being used to think about the future of gene and genome editing using CRISPR and gene drive technologies.
GigaScience, 2016
In February 1996, the genome community met in Bermuda to formulate principles for circulating gen... more In February 1996, the genome community met in Bermuda to formulate principles for circulating genomic data. Although it is now 20 years since the Bermuda Principles were formulated, they continue to play a central role in shaping genomic and data-sharing practices. However, since 1996, "openness" has become an increasingly complex issue. This commentary seeks to articulate three core challenges data-sharing faces today.
International Encyclopedia of the Social and Behavioral Sciences, 2015
This article surveys the rise of biotechnology since the closing decades of the twentieth century... more This article surveys the rise of biotechnology since the closing decades of the twentieth century, examining both scientific developments and social and institutional change. As an area of science and technology with the explicit goal of intervening in the machinery of life, biotechnology often disrupts traditional ways of distinguishing “nature” from “culture,” calling into question settled social arrangements. As a result, biotechnology poses difficult challenges of governance. This article examines the rise of biotechnology and considers its technological and epistemic dimensions, then turns to its institutional aspects and problematic position in contemporary politics. The role of risk management and bioethics in legitimation are discussed.
"Capturing the Imaginary: Vanguards, Visions, and the Synthetic Biology Revolution," Chapter 3 in Hilgartner, S., Miller, C., and Hagendijk, R., eds., (2015) Science & Democracy" Making Knowledge and Making Power in the Biosciences and Beyond,“ Routledge.
The medialization concept was developed using differentiation theory and has been applied analyti... more The medialization concept was developed using differentiation theory and has been applied analytically at the level of systems. This chapter develops a complementary perspective for considering medialization that focuses on media orientation as it is expressed in interaction. How do individual scientists or science-intensive organizations manifest an orientation to the media? In what ways, and how intensely, does the media fit into their activities? To address these questions, the chapter develops a framework that conceptualizes media orientation as a specific form of what Erving Goffman calls “theatrical self-consciousness.” The tools of dramaturgical analysis are brought to the staging of science, providing a vocabulary for exploring science-media coupling not as connections between abstract systems but as strategic interaction. The focus on theatrical self-consciousness casts a spotlight on questions about precisely what actors seek to make visible to whom and when. An ethnographic study of genome research during the Human Genome Project provides data. The chapter examines interactions surrounding a specific episode: the announcement that a private firm, Celera Genomics, intended to sequence the human genome before the public project could. The analysis provides a look at the specific and varied ways in which members of a particular research community related to the media. The conclusion distinguishes among four facets of media orientation (the actor as performer, as audience, as commentator, and as builder of media relations infrastructure). Finally, it notes some possible methodological implications.
This paper argues that the field of risk communication should pay more attention to studying expe... more This paper argues that the field of risk communication should pay more attention to studying experts and the knowledge that they produce. In particular, I suggest that examining the social dimensions of expert knowledge about risk is worthwhile for both instrumental and theoretical reasons. From an instrumental point of view, understanding what shapes expert knowledge about risk could contribute to better risk management. In many risk areas, decision making involves complex negotiations about the strength of technical evidence—often in a context of scientific uncertainty, disagreement about the credibility of different types of expertise, and struggle among a variety of actors. Indeed, the social and political challenges of creating credible sources of expertise and credible knowledge often rank among the significant obstacles to policy making about risk (Jasanoff 1990; Hilgartner 2000). For this reason, society’s ability to address risk depends not only on sophisticated analytic methods and communication strategies, but also on a reflexive understanding of how our modes of knowing shape what we believe and what we do about risk.
Risk communication research should also make the analysis of expert knowledge more central for theoretical reasons. Given the importance of risk to the politics of our time, social analysts have good reasons to try to understand the role of risk assessment, management, and communication in the exercise of power and the maintenance of political legitimacy. [This is the English version of a paper originally published as: "Las dimensiones sociales del conocimiento experto del riesgo" in Moreno Castro, Carolina (Ed.) Comunicar los riesgos. Ciencia y tecnología en la sociedad de la información. Madrid: Biblioteca Nueva/OEI (2009), pp. 159-170.]
This paper argues that the field of risk communication should pay more attention to studying expe... more This paper argues that the field of risk communication should pay more attention to studying experts and the knowledge that they produce. In particular, I suggest that examining the social dimensions of expert knowledge about risk is worthwhile for both instrumental and theoretical reasons. From an instrumental point of view, understanding what shapes expert knowledge about risk could contribute to better risk management. In many risk areas, decision making involves complex negotiations about the strength of technical evidence — often in a context of scientific uncertainty, disagreement about the credibility of different types of expertise, and struggle among a variety of actors. Indeed, the social and political challenges of creating credible sources of expertise and credible knowledge often rank among the significant obstacles to policy making about risk. For this reason, society’s ability to address risk depends not only on sophisticated analytic methods and communication strategies, but also on a reflexive understanding of how our modes of knowing shape what we believe and what we do about risk.
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Books by Stephen Hilgartner
Key themes addressed include the way genomic based DNA technologies have become incorporated into diverse arenas of clinical practice and research whilst also extending beyond the clinic; the role of genomics in contemporary ‘bioeconomies’; how challenges in the governance of medical genomics can both reconfigure and stabilise regulatory processes and jurisdictional boundaries; how questions of diversity and justice are situated across different national and transnational terrains of genomic research; and how genomics informs – and is shaped by – developments in fields such as epigenetics, synthetic biology, stem cell, microbial and animal model research.
Presenting cutting edge research from leading social science scholars, the Handbook provides a unique and important contribution to the field. It brings a rich and varied cross disciplinary social science perspective that engages with both the history and contemporary context of genomics and ‘post-genomics’, and considers the now global and transnational terrain in which these developments are unfolding.
Drawing on real-time interviews and observations made during the HGP, Reordering Life describes the sociotechnical challenges and contentious issues that the genomics community faced throughout the project. Hilgartner analyzes how laboratories control access to data, biomaterials, plans, preliminary results, and rumors; compares conflicting visions of how to impose coordinating mechanisms; examines the repeated destabilization and restabilization of the regimes governing genome databases; and examines the fierce competition between the publicly funded HGP and the private company Celera Genomics. The result is at once a path-breaking study of a self-consciously revolutionary science, and a provocative analysis of how knowledge and control are reconfigured during transformative scientific change.
Building on new work in science and technology studies (STS), this book advances the systematic analysis of the coproduction of knowledge and power in contemporary societies. Using case studies in the new life sciences, supplemented with cases on informatics and other topics such as climate science, this book presents a theoretical framing of coproduction processes while also providing detailed empirical analyses and nuanced comparative work.
Contents: Introduction, Stephen Hilgartner, Clark A. Miller, and Rob Hagendijk 2. Biology Denatured: The public-private lives of lively things, David Winickoff 3. Imagining the Unimaginable: Making a synthetic biology revolution plausible, Stephen Hilgartner 4. Courting Innovation: The constitution(s) of Indian biomedicine, Kaushik Sunder Rajan 5. Co-Producing Knowledge and Political Legitimacy: Comparing life form patent controversies in Europe and the United States, Shobita Parthasarathy 6. Dispute Settlement and Legitimacy of the World Trade Organization: Adjudicating knowledge claims in the Brazil – USA cotton case, Arthur Daemmrich 7. Co-Production and Democratizing Global Environmental Expertise: The IPPC and adaptation to climate change, Silke Beck and Tim Forsyth 8. Governing Emerging Technologies – The need to think outside the (black) box, Pierre-Benoit Joly 9. To Bind or Not Bind? European Ethics as Soft Law, Mariachiara Tallacchini 10. Sociotechnical Imaginaries, Digital Health Information, and the Reimaging of the Citizen-Patients, Ulrike Felt 11. Knowledge and Democracy: The epistemics of self-governance, Clark A. Miller 12. Sense and Sensibility: Science, society, and politics as co-production, Rob Hagendijk.
Papers by Stephen Hilgartner
the genome mapping and sequencing project itself, advanced what became known as the “‘ELSI hypothesis’: that combining scientific research funding with adequate support for complementary research and public deliberation on the uses of new knowledge will help our social policies about science evolve in a well-informed way” (National Institutes of Health 1993, 48). As the words implications and uses imply, the U.S. ELSI program tended to focus on downstream “impacts” rather than on the shaping of genome knowledge and technology itself. The European counterpart to ELSI used the acronym ELSA, with the “A” denoting aspects , to avoid the deterministic and narrow connotations of the term implications . (Below, we will use the term “ELS programs” when referring to these programs as a category; specific programs will retain their original designation.)
The ELS “experiment” continues today; by 2013, the U.S. ELSI program had dispersed $317 million of research support (McEwen et al. 2014). In many other countries, ELS programs were established (more or less temporarily, as in the Austrian case) at national levels, including in Austria, Canada, Finland, Germany, the Netherlands, Norway, the United Kingdom, South Korea, and Switzerland, and also at the EU level
(Chadwick and Zwart 2013; Zwart, Landeweerd, and van Rooij 2014). 1 The influence of the ELS model extends far beyond genomics. It has served as a model in other fields of emerging science and technology, including nano and synthetic biology, where actors have sought to anticipate and manage societal issues, reassure publics, and maintain political legitimacy. 2 It has also been incorporated into methodologies of technology assessment and societal impact assessment (Kreissl, Fritz, and Ostermeier 2015). Advocates of these latter approaches often hasten to distinguish these programs from U.S. ELSI. But even if we treat these newer formations of engagement with societal, regulatory,
and ethical aspects of science and technology as genuinely new, the emergence of ELS programs in genomics nevertheless was a touchstone in their development. Moreover, ELS programs figure importantly in the governance of emerging science and technology, shaping scholarly fields on the one hand, and governance agendas on the other. As McEwen et al. (2014, 491) argue, “the most consequential impact of ELSI research” may consist of subtle yet significant changes in the cultural milieu in which
genomics research is conducted and implemented and in the use of scientific evidence in decision making.
The varied incarnations of the ELS model, including in such areas as nano and synthetic biology, represent a notable development in science-society relations: deploying “ethics” programs as subsidiary components of larger technoscientific projects. This form of ethics corresponds neither to an academic field nor to rational reflection on the foundations of moral life but is a new governance tool built on the prior institutionalization of “bioethics” as a way to manage problems of moral ambiguity and disagreement in biomedicine. The ELS model, emphatically an interdisciplinary one, was also implicated in
changes in the social sciences, for example, by drawing scholars to the study of normative questions associated with major technoscientific initiatives. Over the years, many types of scholars have hitched their wagons to these programs and/or tried to push them in new directions. As a result, ELS programs have typically included a heterogeneous
collection of disciplines and diverse research agendas. Science and technology studies (STS) scholars have often been part of the mix. These programs have presented opportunities, not least by providing funding to STS researchers (ourselves included) and by making participation in these enterprises possible. STS scholars have engaged
with these programs in a variety of contributory and critical modes, which we will review below. Others again have worked to reshape these programs by bringing STS sensibilities under their remit. They have also participated in ELS work with the goal of inventing new roles for the social sciences in the governance of emerging technology. At other times, they have treated ELS activities as a site not only for investigating traditional topics of STS research, such as the construction of scientific facts and technology but also for symmetrical analysis of the interplay of knowledge and conceptions of public benefit, right reason, and democratic order.
Full text: http://www.palgrave-journals.com/biosoc/journal/v7/n2/full/biosoc20125a.html
Risk communication research should also make the analysis of expert knowledge more central for theoretical reasons. Given the importance of risk to the politics of our time, social analysts have good reasons to try to understand the role of risk assessment, management, and communication in the exercise of power and the maintenance of political legitimacy. [This is the English version of a paper originally published as: "Las dimensiones sociales del conocimiento experto del riesgo" in Moreno Castro, Carolina (Ed.) Comunicar los riesgos. Ciencia y tecnología en la sociedad de la información. Madrid: Biblioteca Nueva/OEI (2009), pp. 159-170.]
Key themes addressed include the way genomic based DNA technologies have become incorporated into diverse arenas of clinical practice and research whilst also extending beyond the clinic; the role of genomics in contemporary ‘bioeconomies’; how challenges in the governance of medical genomics can both reconfigure and stabilise regulatory processes and jurisdictional boundaries; how questions of diversity and justice are situated across different national and transnational terrains of genomic research; and how genomics informs – and is shaped by – developments in fields such as epigenetics, synthetic biology, stem cell, microbial and animal model research.
Presenting cutting edge research from leading social science scholars, the Handbook provides a unique and important contribution to the field. It brings a rich and varied cross disciplinary social science perspective that engages with both the history and contemporary context of genomics and ‘post-genomics’, and considers the now global and transnational terrain in which these developments are unfolding.
Drawing on real-time interviews and observations made during the HGP, Reordering Life describes the sociotechnical challenges and contentious issues that the genomics community faced throughout the project. Hilgartner analyzes how laboratories control access to data, biomaterials, plans, preliminary results, and rumors; compares conflicting visions of how to impose coordinating mechanisms; examines the repeated destabilization and restabilization of the regimes governing genome databases; and examines the fierce competition between the publicly funded HGP and the private company Celera Genomics. The result is at once a path-breaking study of a self-consciously revolutionary science, and a provocative analysis of how knowledge and control are reconfigured during transformative scientific change.
Building on new work in science and technology studies (STS), this book advances the systematic analysis of the coproduction of knowledge and power in contemporary societies. Using case studies in the new life sciences, supplemented with cases on informatics and other topics such as climate science, this book presents a theoretical framing of coproduction processes while also providing detailed empirical analyses and nuanced comparative work.
Contents: Introduction, Stephen Hilgartner, Clark A. Miller, and Rob Hagendijk 2. Biology Denatured: The public-private lives of lively things, David Winickoff 3. Imagining the Unimaginable: Making a synthetic biology revolution plausible, Stephen Hilgartner 4. Courting Innovation: The constitution(s) of Indian biomedicine, Kaushik Sunder Rajan 5. Co-Producing Knowledge and Political Legitimacy: Comparing life form patent controversies in Europe and the United States, Shobita Parthasarathy 6. Dispute Settlement and Legitimacy of the World Trade Organization: Adjudicating knowledge claims in the Brazil – USA cotton case, Arthur Daemmrich 7. Co-Production and Democratizing Global Environmental Expertise: The IPPC and adaptation to climate change, Silke Beck and Tim Forsyth 8. Governing Emerging Technologies – The need to think outside the (black) box, Pierre-Benoit Joly 9. To Bind or Not Bind? European Ethics as Soft Law, Mariachiara Tallacchini 10. Sociotechnical Imaginaries, Digital Health Information, and the Reimaging of the Citizen-Patients, Ulrike Felt 11. Knowledge and Democracy: The epistemics of self-governance, Clark A. Miller 12. Sense and Sensibility: Science, society, and politics as co-production, Rob Hagendijk.
the genome mapping and sequencing project itself, advanced what became known as the “‘ELSI hypothesis’: that combining scientific research funding with adequate support for complementary research and public deliberation on the uses of new knowledge will help our social policies about science evolve in a well-informed way” (National Institutes of Health 1993, 48). As the words implications and uses imply, the U.S. ELSI program tended to focus on downstream “impacts” rather than on the shaping of genome knowledge and technology itself. The European counterpart to ELSI used the acronym ELSA, with the “A” denoting aspects , to avoid the deterministic and narrow connotations of the term implications . (Below, we will use the term “ELS programs” when referring to these programs as a category; specific programs will retain their original designation.)
The ELS “experiment” continues today; by 2013, the U.S. ELSI program had dispersed $317 million of research support (McEwen et al. 2014). In many other countries, ELS programs were established (more or less temporarily, as in the Austrian case) at national levels, including in Austria, Canada, Finland, Germany, the Netherlands, Norway, the United Kingdom, South Korea, and Switzerland, and also at the EU level
(Chadwick and Zwart 2013; Zwart, Landeweerd, and van Rooij 2014). 1 The influence of the ELS model extends far beyond genomics. It has served as a model in other fields of emerging science and technology, including nano and synthetic biology, where actors have sought to anticipate and manage societal issues, reassure publics, and maintain political legitimacy. 2 It has also been incorporated into methodologies of technology assessment and societal impact assessment (Kreissl, Fritz, and Ostermeier 2015). Advocates of these latter approaches often hasten to distinguish these programs from U.S. ELSI. But even if we treat these newer formations of engagement with societal, regulatory,
and ethical aspects of science and technology as genuinely new, the emergence of ELS programs in genomics nevertheless was a touchstone in their development. Moreover, ELS programs figure importantly in the governance of emerging science and technology, shaping scholarly fields on the one hand, and governance agendas on the other. As McEwen et al. (2014, 491) argue, “the most consequential impact of ELSI research” may consist of subtle yet significant changes in the cultural milieu in which
genomics research is conducted and implemented and in the use of scientific evidence in decision making.
The varied incarnations of the ELS model, including in such areas as nano and synthetic biology, represent a notable development in science-society relations: deploying “ethics” programs as subsidiary components of larger technoscientific projects. This form of ethics corresponds neither to an academic field nor to rational reflection on the foundations of moral life but is a new governance tool built on the prior institutionalization of “bioethics” as a way to manage problems of moral ambiguity and disagreement in biomedicine. The ELS model, emphatically an interdisciplinary one, was also implicated in
changes in the social sciences, for example, by drawing scholars to the study of normative questions associated with major technoscientific initiatives. Over the years, many types of scholars have hitched their wagons to these programs and/or tried to push them in new directions. As a result, ELS programs have typically included a heterogeneous
collection of disciplines and diverse research agendas. Science and technology studies (STS) scholars have often been part of the mix. These programs have presented opportunities, not least by providing funding to STS researchers (ourselves included) and by making participation in these enterprises possible. STS scholars have engaged
with these programs in a variety of contributory and critical modes, which we will review below. Others again have worked to reshape these programs by bringing STS sensibilities under their remit. They have also participated in ELS work with the goal of inventing new roles for the social sciences in the governance of emerging technology. At other times, they have treated ELS activities as a site not only for investigating traditional topics of STS research, such as the construction of scientific facts and technology but also for symmetrical analysis of the interplay of knowledge and conceptions of public benefit, right reason, and democratic order.
Full text: http://www.palgrave-journals.com/biosoc/journal/v7/n2/full/biosoc20125a.html
Risk communication research should also make the analysis of expert knowledge more central for theoretical reasons. Given the importance of risk to the politics of our time, social analysts have good reasons to try to understand the role of risk assessment, management, and communication in the exercise of power and the maintenance of political legitimacy. [This is the English version of a paper originally published as: "Las dimensiones sociales del conocimiento experto del riesgo" in Moreno Castro, Carolina (Ed.) Comunicar los riesgos. Ciencia y tecnología en la sociedad de la información. Madrid: Biblioteca Nueva/OEI (2009), pp. 159-170.]
order. This literature is diffuse and the interests and theoretical
perspectives of various authors differ, but the relevant work includes studies of knowledge-making in the aftermath of such failures as the Windscale nuclear accident, the Bhopal disaster, the Challenger explosion, the bovine spongiform encephalitis (BSE) episode, and the debacle of the Florida vote in the 2000 US Presidential election.1 To summarize (very briefly and admittedly inadequately) some major themes of this rich literature, I will list seven points. In the final section, I relate them to the Katrina case, and advance several tentative predictions.
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Democracy, edited by Bruno Latour and Peter Weibel. MIT Press, 2005.
If the 1970s was the decade of lost innocence about risk, then the 1990s was thedecade of lost innocence about intellectual property (IP). Until the early 1980s, decisions about IP captured relatively little public attention. The field attracted scant interest except among a narrow group of specialists who practiced in a doubly technical domain at the interface of arcane law and complex technology. Most legal scholars saw intellectual property as politically uninteresting, far removed from the exciting fields, such as constitutional law, where academic careers could be made. This is not to say that IP decisions went uncontested; indeed, vast fortunes sometimes turned on the outcomes of patent litigation. But most observers saw these battles as matters that concerned the immediate parties, not as issues that raised fundamental questions about public policy, democratic decision making, and global governance. This brief discussion paper outlines the sources of tension that animate these concerns and reflects on the capacity of existing institutions to reconcile them.
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