A discourse-theoretic perspective on the bioethical-legal framework of genetic counseling

The reflexive nature of reason and the unique relationship reason shares with autonomy in Kant's philosophy is the theoretical basis of this dissertation. The principle of respect for autonomy undergirds the two main legal and ethical tenets of genetic counseling, an emerging profession trying to accommodate the sweeping changes that have occurred in clinical genetics, clinical ethics, and case law applicable to medicine. These two tenets of the counseling profession, informed consent and nondirectiveness, both share a principlist interpretation of autonomy that I argue is flawed due to its connection to: instrumental forms of reasoning, empirical theories of action supporting rational choice, and a liberal paradigm of law. I offer an alternative bioethical-legal framework that is based in the Kantian tradition in law and ethics through the complex theories of Jurgen Habermas. Following Habermas's reconstruction of the mutually constituting notions of private and public autonomy, I will argue for a richer conceptualization of autonomy that can have significant implications for the legal and bioethical concepts supporting the profession of genetic counseling, and which can ultimately change counseling practice. ^

A discourse-theoretic approach to negotiated rulemaking

In 1996 and in 1997, Congress ordered the Secretary of Health and Human Services to undertake a process of negotiated rulemaking, which is authorized under the Negotiated Rulemaking Act of 1990, on three separate rulemaking matters. Other Federal agencies, including the Environmental Protection Agency and the Occupational Health and Safety Administration, have also made use of this procedure. As part of the program to reinvent government, President Clinton has issued an executive order requiring federal agencies to engage in some negotiated rulemaking procedures. I present an analytic, interpretative and critical approach to looking at the statutory and regulatory provisions for negotiated rulemaking as related to issues of democratic governance surrounding the problem of delegation of legislative power. The paradigm of law delineated by Jürgen Habermas, which sets law the task of achieving social or value integration as well as integration of systems, provides the background theory for a critique of such processes. My research questions are two. First, why should a citizen obey a regulation which is the result of negotiation by directly interested parties? Second, what is the potential effect of negotiated rulemaking on other institutions for deliberative democracy? For the internal critique I argue that the procedures for negotiated rulemaking will not produce among the participants the agreement and cooperation which is the legislative intent. For the external critique I argue that negotiated rulemaking will not result in democratically-legitimated regulation. In addition, the practice of negotiated rulemaking will further weaken the functioning of the public sphere, as Habermas theorizes it, as the central institution of deliberative democracy. The primary implication is the need to mitigate further development of administrative agencies as isolated, self-regulating systems, which have been loosened from the controls of democratic governance, through the development of a robust public sphere in which affected persons may achieve mutual understanding. ^

The New Concept of Universal Service in a Digital Networked Communications Environment

Digitization, sophisticated fiber-optic networks and the resultant convergence of the media, communications and information technology industries have completely transformed the communications ecosystem in the last couple of decades. New contingent business and social models were created that have been mirrored in the amended communications regimes. Yet, despite an overhaul of the communications regulation paradigm, the status of and the rules on universal service have remained surprisingly intact, both during and after the liberalization exercise. The present paper looks into this paradox and examines the sustainability of the existing concept of universal service. It suggests that there is a need for a novel concept of universal service in the digital networked communications environment, whose objectives go beyond the conventional internalizing and redistributional rationales and concentrate on communication and information networks as a public good, where not only access to infrastructure but also access to content may be essential.

Intellectual Property and Traditional Cultural Expressions in a Digital Environment. Preface

In the face of increasing globalisation, there is a pressing need for innovative trans-disciplinary analyses of the value of traditional cultural expressions (TCE) that also suggest appropriate protection mechanisms for them. The book to which this preface belongs combines approaches from history, philosophy, anthropology, sociology and law, and charts previously untravelled paths for developing new policy tools and legal designs that go beyond conventional copyright models. It reflects also upon the specific features of the digital environment, which, despite enhancing the risks of misappropriation of traditional knowledge and creativity, may equally offer some opportunities for revitalising indigenous peoples' values and provide for the sustainability of TCE.

Does culture really matter in sports participation? The impact of socio-cultural factors on sports behaviour in Switzerland

The physical activity of the Swiss population differs considerably depending on the linguistic region. German speakers are more often physically active than people living in the French or Italian-speaking part of Switzerland (Stamm & Lamprecht, 2011). This study analyses how socio-cultural factors correlate with sports participation for adolescents and young adults. In order to analyse this research question, Bourdieu’s concept of habitus (1984) has been adapted and used as a theoretical background. This sport-related concept of habitus considers culturally determined values, the attribution of meaning and patterns of action such as the understanding of sports, the importance of sports, body, health or leisure. On this basis, the sport-related habitus and the practical relevance of sports participation has been empirically reconstructed for adolescents and young adults aged 15 to 25 through a qualitative study including guideline-based interviews with German (n=6) and French (n=4) speaking adolescents and young adults, as well as a quantitative survey in a German (n=106) and a French (n=99) speaking commune of Switzerland. Initial findings reveal that young German speakers associate sports with self-discipline (χ²(1, N=205)= 8.223, p<.005, V=.200) and fitness (χ²(1, N=205)= 21.989, p<.005, V=.328) whereas young French speakers are more likely to relate health (χ²(1, N=205)= 9.455, p<.005, V=.215), effort and perspiration (χ²(1, N=205)= 18.835, p<.005, V=.303) to sports. Similarly, the understanding of body and health as well as the attitude towards leisure differs between the German and French speaking parts of Switzerland. This study illustrates that the concept of sports habitus is culturally shaped and therefore may be fruitful in further analyses. Bourdieu, P. (1984). Distinction. A Social Critique of the Judgement of Taste. Cambridge: Harvard University Press. Stamm, H. & Lamprecht, M. (2008). Swiss sports participation in an international perspective. European Journal for Sport and Society, 8 (1+2), 15-29.

Hybrid bodies in cyborg sports? The case of Oscar Pistorius

The capabilities of postmodern biotechnology inevitably lead to questioning if it is morally acceptable to use all possibilities offered by technology. In sport, this very complex issue is dealt with by drawing clear boundaries between naturalness and artificiality. Currently, new biotechnology is constantly being produced and with this, boundaries between naturalness and artificiality, between normal and abnormal, human and hybrid are constantly shifting . “Human enhancement” is a fascinating prism that reflects contemporary questions of participation, justice, equality and the autonomy of the subject in all social fields. The area of elite sports is particularly affected by “human enhancement”, according to the principle of exceeding what has come before, of aiming higher, faster and further. This paper analyses the postulated “naturalness” in the regulative and normalising function in the area of elite sports, in connection with Foucault’s theory of governmentality. The example of the South African sprinter Oscar Pistorius appears to be particularly suited to illustrate current definition difficulties in the area of disabled and non-disabled people in differentiated competitive sports. His is a vivid example of a multifaceted body-sociological analysis of current sport culture and the construction of reality or naturalness in the framework of the discourse of drafting and negotiating the accreditation for sprint competitions of non-disabled athletes, most recently in the London Olympics 2012. Using the case study of Oscar Pistorius, the negotiating processes in relation to the argumentation logic, dynamics and resistance in shifting distinctions are presented in detail using the fundamental documents of the IOC, IPC, CAS and IAAF. Represented through the inclusion and exclusion processes are hierarchies of the body that are (re)consolidated and transformed. The central question emerges as to how the worth of equal opportunity and fairness in regard to “naturalness” can be reconsolidated or transformed.