Genetic testing has become a vehicle through which basic constitutional relationships between citizens and the state are revisited, reaffirmed, or rearticulated. The interplay between the is of genetic knowledge and the ought of government unfolds in the context of diverse imaginaries of the forms of human well-being, freedom, and flourishing that states have a duty to support. This article examines how the United Kingdom, Germany, and the United States governed testing for Alzheimer’s disease, and how they diverged in defining potential (...) harms, benefits, and objects of regulation. Comparison before and after the arrival of direct-to-consumer genetic tests reveals differences in national understandings of what it means to protect life and citizenship: in the United Kingdom, ensuring physical wellness through clinical utility; in the United States, protecting both citizens’ physical well-being and freedom to choose through a framework of consumer protection; and in Germany, emphasizing individual flourishing and an unburdened sense of human development that is expressed in genetic testing law and policy as a commitment to the stewardship of personhood. Operating with their own visions of what it means to protect life and citizenship, these three states arrived at settlements that coproduced substantially different bioconstitutional regimes around Alzheimer’s testing. (shrink)

The ability to make direct genetic changes to the DNA of future children poses profound challenges for governance: should it be done? For what purposes and subject to what limitations? And, no less importantly, who should decide? As a resolution pending in the US Senate rightly states, the prospect of editing the germline "touches on all of humanity". Given this, how should we as a human community guide and govern this emerging technology?The question of how human genome editing should be (...) governed—and by whom—has been at the heart of the debates that have unfolded over the course of the last five years.... (shrink)

Why do laws and regulations marking boundaries between humans and other animals proliferate amid widespread proclamations of the waning of the species concept and the consensus that life is a continuum? Here I consider a recent spate of new guidelines and regulations in the United Kingdom and United States that work to estrange human bodies from other animals in biomedicine. Using the idea of a bioconstitutional moment to understand how state institutions deliberate over “human–animal chimeras,” I address how nations differently (...) establish separations between humans and other animals. New chimeric entities, containing human hereditary material, have consecrated regulatory ground and signify increased attention to fields of research that have long used interspecies mixing. Regulators and policy makers now find themselves in a curious position. On the one hand, they continue to regulate the estrangement between humans and other animals, but on the other, they support the creation of chimeric life––a form of life that draws into question the very basis of such separations. (shrink)

Institutional ethics consultation services for biomedical scientists have begun to proliferate, especially for clinical researchers. We discuss several models of ethics consultation and describe a team-based approach used at Stanford University in the context of these models. As research ethics consultation services expand, there are many unresolved questions that need to be addressed, including what the scope, composition, and purpose of such services should be, whether core competencies for consultants can and should be defined, and how conflicts of interest should (...) be mitigated. We make preliminary recommendations for the structure and process of research ethics consultation, based on our initial experiences in a pilot program. (shrink)

In the past twenty years, the field of science and technology studies (S&TS) has made considerable progress toward illuminating the relationship between scientific knowledge and political power. These insights have not yet been synthesized or presented in a form that systematically highlights the connections between S&TS and other social sciences. This timely collection of essays by some of the leading scholars in the field attempts to fill that gap. The book develops the theme of "co-production", showing how scientific knowledge both (...) embeds and is embedded in social identities, institutions, representations and discourses. Accordingly, the authors argue, ways of knowing the world are inseparably linked to the ways in which people seek to organize and control it. Through studies of emerging knowledges, research practices and political institutions, the authors demonstrate that the idiom of co-production importantly extends the vocabulary of the traditional social sciences, offering fresh analytic perspectiveson the nexus of science, power and culture. (shrink)

Science and Democracy in Europe and the United States Sheila Jasanoff. Lippmann, Walter. The Phantom Public. New Brunswick: Transaction Publishers, 1993 [1925]. Litfin, Karen . Ozone Discourses: Science and Politics in Global ...

Recent developments in biotechnology and genetic research are raising complex ethical questions concerning the legitimate scope and limits of genetic intervention. As we begin to contemplate the possibility of intervening in the human genome to prevent diseases, we cannot help but feel that the human species might soon be able to take its biological evolution in its own hands. 'Playing God' is the metaphor commonly used for this self-transformation of the species, which, it seems, might soon be within our grasp. (...) In this important new book, Jurgen Habermas - the most influential philosopher and social thinker in Germany today - takes up the question of genetic engineering and its ethical implications and subjects it to careful philosophical scrutiny. His analysis is guided by the view that genetic manipulation is bound up with the identity and self-understanding of the species. We cannot rule out the possibility that knowledge of one's own hereditary factors may prove to be restrictive for the choice of an individual's way of life and may undermine the symmetrical relations between free and equal human beings. In the concluding chapter - which was delivered as a lecture on receiving the Peace Prize of the German Book Trade for 2001 - Habermas broadens the discussion to examine the tension between science and religion in the modern world, a tension which exploded, with such tragic violence, on September 11th. (shrink)