Clinical Trials Abroad: The Marketable Ethics, Weak Protections and Vulnerable Subjects of EU Law

This chapter explores how the EU is a largely overlooked exporter of normative power through its facilitation and use of clinical trials data produced abroad for the marketing of safe pharmaceuticals at home; a move that helps to foster the growing resort to pharmaceuticals as a fix for public health problems. This is made possible by the EU’s (de)selection of international ethical frameworks in preference to the international technical standards it co-authors with other global regulators. Clinical trials abroad underscore how ethics are contingent and revisable in light of market needs, producing weak protections for the vulnerable subjects of EU law. I argue that these components and effects of the regime are ultimately about that which undergirds, shapes and directs regulatory design. That is, I point to the use, infiltration, perpetuation and extension of market-oriented ideas, values and rationalities into formally non-market domains like biomedical knowledge production and public health. I explain how these are central to efforts at producing and legitimating the EU, its related imagined socio-political order based on a more innovative, profitable and competitive pharmaceutical sector in order to foster economic growth, jobs and prosperity, and with them the project of European integration. ‘Bioethics as risk’ is highlighted as a way to reshape and redirect the regulatory regime in ways that are more consistent with the spirit and letter of the ethical standards (and through them the human rights) the EU claims to uphold.

Power, Pedagogy and Participation: ethics and pragmatics in research with young people

This article addresses issues of methodology and ethical reflexivity when attempting to investigate the opinions of young people. Drawing specifically on three studies of young people's understandings of citizenship and their views on topical issues, two from England and one from Lebanon, the authors present ways in which the ethical and practical challenges of such research can be met. While acknowledging the power relationship between researchers and informants, they suggest that what they call ‘pedagogical research approaches’ built on a participative methodology can open up a space where both parties benefit. They argue that, when working in schools, teacher educators can take advantage of this status to present themselves simultaneously as insiders and outsiders. The authors have devised what are intended to be non-exploitative research instruments that permit the gathering of useful qualitative data during a short encounter. They illustrate their approach with examples of classroom activities they have developed to provide simultaneously a valid learning experience and usable data.

An Inclusive Design Dialogue on Ethics and Aesthetics

One of the many definitions of inclusive design is that it is a user-led approach to design. To date its focus has been on ‘critical’ users, in particular disabled people. As such, there is pressure to design environments that meet the often urgent and complex demands of these users. Designers, uncertain of their knowledge, rely heavily on user input and guidance, often resulting in designs that are ‘solution’ driven (rather than solution seeking) and short term; users focus on what they need, not what they might need. This paper argues that design needs to reclaim an equal presence within inclusive design. It proposes that the ‘weakness’ of design lies in the uneasy and at times conflicting relationship between ethics and aesthetics. The paper itself is constructed around a dialogue between two academics, one concerned with critical user needs, the other with aesthetics, but both directed towards the support of design quality

Ethics in sexual behavior assessment and support for people with intellectual disability

Sexuality is an issue of equality, rights, and ethics, especially when it comes to the sexuality of people with intellectual and developmental disabilities. This paper offers a discussion of ethics related to the assessment and intervention supports of sexual behavior in people with intellectual and developmental disabilities. A brief history of sexuality and disability is presented. Issues of sexual abuse of people with intellectual and developmental disabilities and the laws related to sterilization, pornography, sexual rights, and consent are explored. Finally, specific ethical concerns related to intervention by behavior analysts in the realm of sexual behavior are examined.

L’éco-innovation : une opportunité du développement durable ? Quelques éléments de bilan et de prospective niveaux européen et international.

Ce texte se focalise sur le rôle que les éco-innovations peuvent jouer en matière de compétitivité,notamment pour l’économie et les entreprises européennes.Une première partie fait ressortir les grandes tendances internationales en émergence quant aux caractères des éco-innovations, afin d’identifier les leviers permettant d’accroître leur performance.Ensuite,une vision prospective de ce que seront les écoinnovations les plus probables à moyen et long terme permet de comprendre la place des différents pays dans leur développement ainsi que leurs principaux marchés et enjeux. Enfin, nous identifions les écueils à éviter et les précautions à prendre afin de s’assurer que l’éco-innovation ne soit pas guidée que par des considérations économiques et qu’elle obéisse également aux principes d’équité et d’acceptabilité sociétale, à la base du développement durable.

"Breaking the Silence: International conference on the Indian residential schools commission of Canada" ; "Briser le silence: Colloque international sur la commission de vérité et de réconciliation sur les pensionnats indiens".

This is the full audio recording of the "Breaking the silence : International conference on the Indian residential schools commission of Canada" that took place at the University of Montreal on September 26-27, 2008. Enregistrement audio complets du colloque "Briser le silence" sur la Commission de vérité et de réconciliation sur les pensionnats indiens, ayant eu lieu à Montréal les 26 et 27 septembre 2008.

Examining discourses on the ethics and public understanding of cognitive enhancement with methylphenidate

L’émergence de l’utilisation du méthylphénidate (MPH; Ritalin) par des étudiants universitaires afin d’améliorer leur concentration et leurs performances universitaires suscite l’intérêt du public et soulève d’importants débats éthiques auprès des spécialistes. Les différentes perspectives sur l’amélioration des performances cognitives représentent une dimension importante des défis sociaux et éthiques autour d’un tel phénomène et méritent d’être élucidées. Ce mémoire vise à examiner les discours présents dans les reportages internationaux de presse populaire, les discours en bioéthique et en en santé publique sur le thème de l’utilisation non médicale du méthylphénidate. Cette recherche a permis d’identifier et d’analyser des « lacunes » dans les perspectives éthiques, sociales et scientifiques de l’utilisation non médicale du méthylphénidate pour accroître la performance cognitive d’individus en santé. Une analyse systématique du contenu des discours sur l’utilisation non médicale du méthylphénidate pour accroître la performance cognitive a identifié des paradigmes divergents employés pour décrire l’utilisation non médicale du méthylphénidate et discuter ses conséquences éthiques. Les paradigmes « choix de mode de vie », « abus de médicament » et « amélioration de la cognition » sont présents dans les discours de la presse populaire, de la bioéthique et de la santé publique respectivement. Parmi les principales différences entre ces paradigmes, on retrouve : la description de l’utilisation non médicale d’agents neuropharmacologiques pour l’amélioration des performances, les risques et bénéfices qui y sont associés, la discussion d’enjeux éthiques et sociaux et des stratégies de prévention et les défis associés à l’augmentation de la prévalence de ce phénomène. La divergence de ces paradigmes reflète le pluralisme des perceptions de l’utilisation non médicale d’agents neuropharmacologiques Nos résultats suggèrent la nécessité de débats autour de l’amélioration neuropharmacologique afin de poursuivre l’identification des enjeux et de développer des approches de santé publique cohérentes.

La liberté républicaine et la démocratisation du régime international

L’idéal républicain de la liberté comme non-domination promu par P. Pettit possède un potentiel intéressant pour penser l’évolution de l’internationalisme. Cet article examine l’enjeu éthique et politique de l’application institutionnelle de la liberté comme non-domination à l’échelle supranationale. Il discute en particulier la thèse de J. Bohman, qui a récemment proposé une interprétation délibérative et cosmopolitique de la conception de la liberté républicaine. Mais le passage de la citoyenneté démocratique nationale à la citoyenneté cosmopolitique, tel que défendu par Bohman, nous semble reposer sur des conceptions trop exigeantes et compréhensives de l’impartialité et de la démocratie. En nous appuyant sur les travaux socio-historiques de S. Sassen et de C. Tilly, nous soutenons que des idéaux normatifs moins exigeants de l’impartialité et de la démocratie gagneraient en réalisme sociologique et en correspondance avec les mécanismes actuellement impliqués dans l’évolution de la coopération internationale et dans la démocratisation des sociétés.

Introduction: Working in Development Ethics – a tribute to Denis Goulet

Denis Goulet (1931-2006) was probably the main founder of work on ‘development ethics’ as a self-conscious field that treats the ethical and value questions posed by development theory, planning and practice. This overview of a selection of papers presented at a conference of the International Development Ethics Association (Uganda, 2006) surveys Goulet’s work and compares it with issues and approaches in the selected papers. Ideas raised by Goulet provide a framework for discussing the set of papers, which especially consider corruption, professional ethics and the rights to water and essential drugs. The papers in turn provide a basis for comparing Goulet’s ideas with actual directions of work on development ethics. Rather than as a separate sub-discipline, development ethics takes shape as an interdisciplinary meeting place, aided though by the profile and intellectual space that Goulet strikingly strove to build for it.

Uncomfortable Comparisons : The Canadian Truth And Reconciliation Commission In International Context

The Canadian Truth and Reconciliation Commission on Indian Residential Schools is a novel foray into a genre previously associated with so-called “transitional” democracies from the post-Communist world and the global South. This basic fact notwithstanding, a systematic comparison with the broader universe of truth commission-hosting countries reveals that the circumstances surrounding the Canadian TRC are not entirely novel. This article develops this argument by distilling from the transitional justice literature several bases of comparison designed to explain how a truth commission’s capacity to promote new cultures of justice and accountability in the wake of massive violations of human rights is affected by the socio-political context in which the commission occurs; the injustices it is asked to investigate; and the nature of its mandate. It concludes that these factors, compounded by considerations unique to the Canadian context, all militate against success. If Canadian citizens and policymakers fail to meet this profound ethIcal challenge, they will find themselves occupying the transition-wrecking role played more familiarly by the recalcitrant and unreformed military and security forces in the world’s more evidently authoritarian states.

Variance in Bioethics Services: Challenges and Opportunities in Canada with a Focus on In-house vs. Outsourced Health Care Ethics Consultations

Étude de cas / Case study

La Réserve fédérale, le régime monétaire international et la justice économique

Full Text / Article complet

An Ethic of Connectedness: Book Review of The Connected Self: The Ethics and Governance of the Genetic Individual

Compte-rendu / Review

A Synergistic Approach to Human Rights and Public Health Ethics: Effective or a Source of Conflict?

Commentaire / Commentary