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Reframing Rights

Reframing Rights: Bioconstitutionalism in the Genetic Age

Edited by Sheila Jasanoff
Series: Basic Bioethics
Copyright Date: 2011
Published by: MIT Press
Pages: 320
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  • Book Info
    Reframing Rights
    Book Description:

    Legal texts have been with us since the dawn of human history. Beginning in 1953, life too became textual. The discovery of the structure of DNA made it possible to represent the basic matter of life with permutations and combinations of four letters of the alphabet, A, T, C, and G. Since then, the biological and legal conceptions of life have been in constant, mutually constitutive interplay--the former focusing on life's definition, the latter on life's entitlements. Reframing Rights argues that this period of transformative change in law and the life sciences should be considered "bioconstitutional."Reframing Rights explores the evolving relationship of biology, biotechnology, and law through a series of national and cross-national case studies. Sheila Jasanoff maps out the conceptual territory in a substantive editorial introduction, after which the contributors offer "snapshots" of developments at the frontiers of biotechnology and the law. Chapters examine such topics as national cloning and xenotransplant policies; the politics of stem cell research in Britain, Germany, and Italy; DNA profiling and DNA databases in criminal law; clinical trials in India and the United States; the GM crop controversy in Britain; and precautionary policymaking in the European Union. These cases demonstrate changes of constitutional significance in the relations among human bodies, selves, science, and the state.

    eISBN: 978-0-262-29866-7
    Subjects: Biological Sciences, General Science

Table of Contents

  1. Front Matter
    (pp. i-iv)
  2. Table of Contents
    (pp. v-vi)
  3. Series Foreword
    (pp. vii-viii)
    Arthur Caplan

    Glenn McGee and I developed the Basic Bioethics series and collaborated as series coeditors from 1998 to 2008. In fall 2008 and spring 2009 the series was reconstituted, with a new editorial board, under my sole editor-ship. I am pleased to present the twenty-ninth book in the series.

    The Basic Bioethics series makes innovative works in bioethics available to a broad audience and introduces seminal scholarly manuscripts, state-of-the-art reference works, and textbooks. Topics engaged include the philosophy of medicine, advancing genetics and biotechnology, end-of-life care, health and social policy, and the empirical study of biomedical life. Interdisciplinary work is encouraged....

  4. Acknowledgments
    (pp. ix-x)
  5. 1 Introduction: Rewriting Life, Reframing Rights
    (pp. 1-28)
    Sheila Jasanoff

    Two encyclopedic bodies of writing—one social, the other scientific—define the meaning of life in our era. Encompassing, respectively, law and biology, these intertwined, mutually supporting, indeed coproducing textual projects frame the possibilities, limits, rights, and responsibilities of being alive—most especially for the species we call human.¹

    Law from ancient times has been a matter of wording. “In the beginning was the word”: first God’s word and then our own secular texts, collectively agreed on. Legal writing makes visible the rules of action and behavior that human societies accept as controlling; it is the legibility of the law,...

  6. 2 States of Eugenics: Institutions and Practices of Compulsory Sterilization in California
    (pp. 29-58)
    Alex Wellerstein

    Between 1909 and the early 1950s, the state of California sterilized over twenty thousand patients in government institutions for the mentally ill and mentally deficient. Of the many states that had compulsory sterilization programs, California’s was by far the largest in terms of patients sterilized, affecting nearly as many people as the sum of the totals from the next four top-sterilizing states combined (figure 2.1).¹ The motivation for these sterilizations has traditionally been associated with the concept of eugenics: the desire to improve the human gene pool by discouraging the reproduction of the “unfit.” These mass sterilizations have generally been...

  7. 3 Making the Facts of Life
    (pp. 59-84)
    Sheila Jasanoff

    On August 9, 2001, nine months after taking office and one month before the terrorist attacks that changed the course of his administration, U.S. president George W. Bush held his first nationally televised news conference. The subject was not Osama Bin Laden or Al Qaeda, news of which had already percolated into America’s intelligence services, but a surprisingly partisan issue on the frontiers of biomedical science. The topic was research with human embryonic stem cells (hESCs). That August evening, from a monthlong working holiday at his Texas ranch, the president announced that he would permit federal funds to be used...

  8. 4 More than Just a Nucleus: Cloning and the Alignment of Scientific and Political Rationalities
    (pp. 85-104)
    Giuseppe Testa

    “It’s so scary to me that this guy I don’t even know can do that. It’s like he’s killing me” (Maienschein 2003, 6). Tessa Wick, an American girl affected with diabetes, is talking about Senator Brownback’s proposal to outlaw reproductive and therapeutic cloning. She is arguing that she can use one of her skin cells and make it into “something” (a cloned embryo, for example) from which to derive cells that could one day cure her disease. Somatic cell nuclear transfer (SCNT), the technology that generated Dolly (Wilmut 1997), entails the transfer of the nucleus from a somatic cell into...

  9. 5 Between Church and State: Stem Cells, Embryos, and Citizens in Italian Politics
    (pp. 105-124)
    Ingrid Metzler

    By the evening of June 13, 2005, Cardinal Camillo Ruini, then head of the Italian Bishops’ Conference (Conferenza Episcopale Italiana), appeared deeply satisfied.¹ It was the evening following a national referendum in which the Italian electorate had voted on the relaxation of Italy’s “norms in matter of medically assisted procreation” (norme in materia di procreazione medicalmente assistita) (Repubblica Italiana 2004). The results, as the cardinal explained on the evening news, had “exceeded all [his] expectations” (La 2005). The referendum was the first test of the law that had moved Italy from the unregulated and permissive end of the regulatory...

  10. 6 Certainty vs. Finality: Constitutional Rights to Postconviction DNA Testing
    (pp. 125-146)
    Jay D. Aronson

    At least in theory, the American criminal justice system is designed to ensure that innocent men and women are not wrongfully convicted for crimes that they did not commit. Constitutional and procedural safeguards abound. American citizens enjoy the right to a jury trial, the right to remain silent upon questioning by the state, the right to legal counsel, the right to examine all of the state’s evidence before trial, the right to cross-examine opposing witnesses, as well as an overarching right to due process. Convicted prisoners also have the right to challenge a conviction if any constitutional rights were denied...

  11. 7 Judicial Imaginaries of Technology: Constitutional Law and the Forensic DNA Databases
    (pp. 147-168)
    David E. Winickoff

    As two powerful epistemic institutions, law and technoscience work together in sustaining models of the individual and society and in producing ruling classifications and categories (Jasanoff 2008). An important case in point concerns new technologies of surveillance and their encounters with the Fourth Amendment of the U.S. Constitution. This “right of the people to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures” has steadily evolved through confrontations between civil liberties claims and advances in wiretapping, aerial photography, and increasingly sensitive microphones (Power 1989). Although STS scholars have closely tracked the bumpy process of bringing...

  12. 8 Risks and Rights in Xenotransplantation
    (pp. 169-192)
    Mariachiara Tallacchini

    Started as a form of experimental surgery and advertised since the 1960s as a solution to the shortage of human organs, xenotransplantation (XT), the transplant of cells, tissues, or organs between different species, moved toward clinical application during the 1990s, when developments in genetic engineering made transgenic animals available for this purpose. The major technical obstacle to performing transplants from one species to another, the hyperacute rejection (HAR) of the transplanted organ or tissue—also existing, but in a weaker form, in human-to-human transplantation—was at least partially overcome when pig tissues and organs (the species of choice for this...

  13. 9 Two Tales of Genomics: Capital, Epistemology, and Global Constitutions of the Biomedical Subject
    (pp. 193-216)
    Kaushik Sunder Rajan

    In this essay, I present two case studies of how genome science emerged and touched down in the early 2000s. One case is from the United States and the other from India (Sunder Rajan 2006). I develop these cases in the context of this volume in the hope that their juxtaposition to the other contributions will bring to light certain questions about rights, subjectivity, and subject-constitution in the life sciences. I am particularly interested in two questions:

    How might we complicate an understanding of subjectivity as it emerges and comes to be at stake in contemporary global biomedicine?

    What does...

  14. 10 Human Population Genomics and the Dilemma of Difference
    (pp. 217-238)
    Jenny Reardon

    The first decade of the twenty-first century witnessed significant institutional changes in the governance of human population genomics. Gone are the days when, for a few bottles of medicine, or some salt and beads, a population geneticist could go to the “remote corners” of the earth to sample human genetic material thought to contain the secrets of human evolution (Cavalli-Sforza, Menozzi, and Piazzi 1994). Today, those who traverse the globe with syringes, dry ice, and Eppendorf tubes to collect human DNA also need lengthy informed consent forms, protocols for community engagements, and a relatively new, yet necessary, class of expert...

  15. 11 Despotism and Democracy in the United Kingdom: Experiments in Reframing Citizenship
    (pp. 239-262)
    Robert Doubleday and Brian Wynne

    At the turn of the millennium, a series of fiascos over scientific advice to government challenged the peculiarly British ways in which such advice had been procured, framed, and used. Prominent episodes included controversy over decommissioning the Brent Spar offshore oil facility, resulting in Greenpeace’s victory over the UK government and Shell in 1994; and the crisis over the UK government’s handling of BSE (bovine spongiform encephalopathy, or mad cow disease) which came to a head in 1996 (Grove-White 1997; van Zwanenberg and Millstone 2005). Such challenges to the presumptive authority of scientific advice over public policy and public life...

  16. 12 Representing Europe with the Precautionary Principle
    (pp. 263-286)
    Jim Dratwa

    The text in this chapter’s epigraph displays the precautionary principle as a taken-for-granted policy instrument for dealing with the scientific uncertainties surrounding the regulation of biotechnology. It associates the principle with European governance and highlights U.S. skepticism toward its application. But what is the precautionary principle and how did it come to represent Europe?

    In this chapter, I trace the formulation of the precautionary principle as a critical hinge in the governance of life sciences and technologies in Europe. I aim to show that “precaution” plays a constitutional role in two respects: as a means of legitimating regulation affecting human...

  17. 13 Conclusion
    (pp. 287-296)
    Sheila Jasanoff

    Revolutionary changes in the scientific representation and technological malleability of living matter in the twentieth century entailed equally farreaching changes in the accommodation of life, especially human life, within the legal cultures of nation states. This book’s principal objective has been to trace some of the most significant shifts, from disparate but complementary perspectives and with a diversity of methods, showing how they fit within a framework that we call bioconstitutionalism. The cases recounted here represent on one level snapshots of transformations still in progress. Each chapter analyzes the responses of a particular kind of institution—hospital, ethics committee, court,...

  18. Series List
    (pp. 297-298)
  19. List of Contributors
    (pp. 299-302)
  20. Index
    (pp. 303-310)