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.

From gendered organizations to compassionate borderspaces: Reading corporeal ethics with Bracha Ettinger

In this article, we propose a new way of approaching the topic of ethics for management and organization theory. We build on recent developments within critical organization studies that focus on the question of what kind of ethics is possible in organizational contexts that are inevitably beset by difference. Addressing this ‘ethics of difference’, we propose a turn to feminist theory, in which the topic has long been debated but which has been underutilized in organization theory until very recently. Specifically, we draw on the work of Bracha Ettinger to re-think and extend existing understandings. Inspired by gender studies, psychoanalysis, philosophy and art, Ettinger’s work has been celebrated for its revolutionary re-theorization of subjectivity. Drawing on a feminist ethics of the body inspired by psychoanalysis, she presents a concept of ‘trans-subjectivity’. In this, subjectivity is defined by connectedness, co-existence and compassion towards the other, and is grounded in what Ettinger terms the ‘matrixial borderspace’. An ethics of organization derived from the concept of the matrixial suggests that a different kind of ethical relation with the Other is possible. In this article, we demonstrate this through examining the issue of gender in the workplace. We conclude by outlining the implications of this perspective for rethinking ethics, embodiment and gender, and in particular for the development of a corporeal ethics for organization studies.

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.

On Being Let Loose in the Field: The Execution of Professional Ethics

In recent years concerns over litigation and the trend towards close monitoring of academic activity has seen the effective hijacking of research ethics by university managers and bureaucrats. This can effectively curtail cutting edge research as perceived ‘safe’ research strategies are encouraged. However, ethics is about more than research governance. Ultimately, it seeks to avoid harm and to increase benefits to society. Rural development debate is fairly quiet on the question of ethics, leaving guidance to professional bodies. This study draws on empirical research that examined the lives of migrant communities in Northern Ireland. This context of increasingly diverse rural development actors provides a backdrop for the way in which the researcher navigates through ethical issues as they unfold in the field. The analysis seeks to relocate ethics from being an annoying bureaucratic requirement to one where it is inherent to rigorous and professional research and practice. It reveals how attention to professional ethics can contribute to effective, situated and reflexive practice, thus transforming ethics to become an asset to professional researchers.

Doing Focus Groups and Interviews with Recent Migrants to Northern Ireland: A Dynamic Interplay of Ethics, Language and Access

This case describes a qualitative social science research project that was conducted in 2009 and that examined the experiences of recent migrants to Northern Ireland. While background to the research and key findings are presented, the topic forms a backdrop to the case. The following aspects of the study are presented: the theoretical context; formulating the research question, design and methodology; key methodological issues; data collection and analysis; project dissemination; and research funding and reporting. The case pays particular attention to the needs and impact of different groups including the researcher, the funding body, the researcher’s employer and the researched. The significance of access, language and ethics to this study are examined. Finally, the way in which the research unfolded in an often-unpredictable way throughout the implementation process is highlighted in the narrative.

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

Research Ethics in Divided and Violent Societies: Seizing the Ethical Opportunity

This chapter explores how to conduct social research in divided and violent societies by developing the concept of the ‘ethical opportunity’. The ‘ethical opportunity’ is situated in a brief discussion of ‘action’ and feminist approaches to research. It argues that seizing the ethical opportunity requires researchers to: plan for their personal safety, plan for participants’ personal safety and plan how they will communicate and disseminate their results. It draws on the author’s personal experience researching in South Africa, Zimbabwe and Northern Ireland, concluding that it is in the communication and dissemination phase that researchers’ hopes for ‘making a difference’ may be realised or dashed. It cautions would-be researchers to manage their own – and research participants’ – expectations about what social research can achieve. Its effects may not often be as transforming and liberating as idealistic researchers hope for, but that should not dissuade them from striving towards those ends.

“How Can a Woman Who Has Been Raped Be Believed?”: Andrea Dworkin, Sexual Violence and the Ethics of Belief

In June 2000, Andrea Dworkin, an American feminist activist and author, published an account of being raped in a Paris hotel room a year earlier. The story was met with widespread disbelief, including from feminist readers. This article explores the reasons for this disbelief, asking how and why narratives of rape are granted – or denied – truth status by their readers. The article argues for understanding the conferral of belief as a narrative transaction involving the actions of both narrator and reader. It posits that Dworkin was widely seen as an unreliable narrator but argues that for ideologically charged narratives such as rape narratives judgements of reliability and belief inevitably draw upon the normative standpoint of the reader. I suggest that there are opposing criteria for establishing the truth of rape narratives; a ‘factual’ or legal model, which sees rape narratives as requiring scrutiny, and an ‘experiential’ model, located within certain strands of feminist politics, which emphasises the ethical importance of believing women’s narratives. The article finishes with a consideration of the place of belief within an ethics of reading and reception of rape narratives.

Reasoning Rights: Comparative judicial engagement

This edited book is about comparative reasoning in human rights cases, exploring the questions: How is it that notionally universal norms are reasoned by courts in such dramatically different ways? What is the shape of this reasoning? What techniques are common across the transnational jurisprudence? What techniques are diverse? With contributions by a team of world-leading human rights scholars, the book moves beyond simply addressing the institutional questions concerning courts and human rights, which too often dominate discussions of this kind. Instead, it seeks a deeper examination of the similarities and divergence in the content of reasons being developed by different courts when addressing comparable human rights questions. These differences, while partly influenced by institutional issues, cannot be attributable to them alone. The book explores the diverse and rich underlying spectrum of human rights reasoning, as a distinctive and particular form of legal reasoning, evident in the case studies across the selected jurisdictions. It is a fascinating study for all those interested in human rights law and legal reasoning.

Finding Merit in Judicial Appointments: NIJAC and the Search for a New Judiciary in Northern Ireland

The post-Agreement constitutional architecture has produced a new legal space in Northern Ireland. While the court structure has largely endured in a recognisable format there are perhaps now new expectations of how it will function in the next stage of Northern Ireland’s transition from a society in conflict. These expectations come into focus around the nature and role of the judiciary that is to oversee this new legal space. At the same time there are other, wider forces pressing upon the judiciary across the United Kingdom and these are being acted out in the various appointment commissions and regimes that have been created to modernise the judiciary. This all contributes to establishing a dynamic context for considering whether and/or how the judiciary in Northern Ireland is changing, and the forces that may be conditioning any change. This chapter looks at some of the expectations that might arise for the judiciary. It focuses both on some ideas about what might be the role of a judge in a transitional context, and the debate about how judges generally should be appointed across the United Kingdom where the idea of “merit” emerges as governing concept. Next consideration is given to how this idea of merit plays out in the Northern Ireland context and, in particular, how it impacts on the appointment of women to senior judicial roles which has emerged as the central concern in the new dispensation. Here the chapter draws on two pieces of research: the first looking at the issues surrounding judicial appointments and attitudes towards seeking such posts in the Northern Ireland context, and a second project where the idea of “merit” as a governing factor in judicial appointment was further explored in focus groups and interviews. Finally the chapter looks ahead at the challenges around judicial appointment that remain and suggests that notion of ‘merit’ has not provided the robust foundation which its proponents imagined it would.

Can Consent Training End Sexual Violence On Campus?: Students, Consent and Sexual Ethics

The ongoing, potentially worsening problem of sexual violence and harassment on university campuses has emerged in the last few years as an area of concern. Female students have been identified as one of the most likely groups to experience sexual violence and this violence is exacerbated by contemporary student cultures around alcohol consumption and gendered and sexual norms. University campuses have also become central to prevention efforts in many countries due to their relatively accessible populations and an ability to implement social policies at an institutional level.
Many of these measures are based around promoting or educating students about sexual consent, and particularly notions of affirmative consent, expressed as ‘Yes means Yes’. However, there exists little research around sexual ethics with students exploring whether consent is in fact the best way to tackle cultural problems of sexual violence on campus. This paper makes use of existing literature on sexual ethics and focus group research undertaken with Australian university students to argue for an approach to the problem of sexual ethics on campus that is broader than simply focusing on training programs in sexual consent. It identifies a number of limitations to the consent framework and argues that prevention efforts need to more seriously engage with broader cultural norms around heterosexuality and gendered relationships.