Justice in human research ethics : a conceptual and practical guide

One of the core values to be applied by a body reviewing the ethics of human research is justice. The inclusion of justice as a requirement in the ethical review of human research is relatively recent and its utility had been largely unexamined until debates arose about the conduct of international biomedical research in the late 1990s. The subsequent amendment of authoritative documents in ways that appeared to shift the meaning of conceptions of justice generated a deal of controversy. Another difficulty has been that both the theory and the substance of justice that are applied by researchers or reviewers can be frequently seen to be subjective. Both the concept of justice – whether distributive or commutative - and what counts as a just distribution or exchange – are given different weight and meanings by different people. In this paper, the origins and more recent debates about the requirement to consider justice as a criterion in the ethical review of human research are traced, relevant conceptions of justice are distinguished and the manner in which they can be applied meaningfully in the ethical review all human research is identified. The way that these concepts are articulated in, and the intent and function of, specific paragraphs of the National Statement on Ethical Conduct in Human Research (NHMRC, ARC, UA, 2007) (National Statement) is explained. The National Statement identifies a number of issues that should be considered when a human research ethics committee is reviewing the justice aspects of an application. It also provides guidance to researchers as to how they can show that there is a fair distribution of burdens and benefits in the participant experience and the research outcomes. It also provides practical guidance to researchers on how to think through issues of justice so that they can demonstrate that the design of their research projects meets this ethical requirement is also provided

Introduction - research ethics : women, sex, and gender in biomedical research

The ethical governance of biomedical research is an area of intense international debate. Scholars argue about who should regulate and how, the appropriate role for ethics committees, what kind of research should be included, and who should be involved in monitoring compliance. A particular aspect of these debates concerns the inclusion of women as research participants and the efforts to ensure that researchers consistently investigate questions of sex and gender in health research. There is increasing evidence of the role of sex in the manifestation and course of some illnesses and their treatment. Moreover, evidence suggests that gendered expectations also affect health outcomes. This special issue investigates how researchers are addressing these issues and debates the appropriate roles of policy makers, ethicists, and lawyers in ensuring that sex and gender differences are taken into account in the development, conduct, and reporting of health research.

The value of respect in human research ethics: A conceptual analysis and a practical guide

In order to continue to maintain public trust and confidence in human research, participants must be treated with respect. Researchers and Human Research Ethics Committee members need to be aware that modern considerations of this value include: the need for a valid consenting process, the protection of participants who have their capacity for consent compromised; the promotion of dignity for participants; and the effects that human research may have on cultures and communities. This paper explains the prominence of respect as a value when considering the ethics of human research and provides practical advice for both researchers and Human Research Ethics Committee members in developing respectful research practices.

Review: "Measuring and evaluating sustainability : ethics in sustainability indexes" by Sarah E. Fredericks, New York, Routledge, Routledge Studies in Sustainable Development, 2014

The concept of ‘sustainability’ has been pushed to the forefront of policy-making and politics as the world wakes up to the impacts of climate change and the effects of the rapid urbanisation and modern urban lifestyles (Yigitcanlar and Teriman 2014). Climate change and fossil fuel-based energy policy have emerged as the biggest challenges for our planet, threatening both built and natural systems with long-term consequences. However, the threats are not limited to the impacts of climate change and unsustainable energy system only – e.g., impacts of rapid urbanisation, socioeconomic crises and governance hiccups are just to name a few (Yigitcanlar 2010a). Along with these challenges, successfully coping with the enormous transformations that our cities, societies and the environment have been going through during the last few decades, and their...

More than just friends? Facebook, disclosive ethics and the morality of technology

Social networking sites have become increasingly popular destinations for people wishing to chat, play games, make new friends or simply stay in touch. Furthermore, many organizations have been quick to grasp the potential they offer for marketing, recruitment and economic activities. Nevertheless, counterclaims depict such spaces as arenas where deception, social grooming and the posting of defamatory content flourish. Much research in this area has focused on the ends to which people deploy the technology, and the consequences arising, with a view to making policy recommendations and ethical interventions. In this paper, we argue that tracing where morality lies is more complex than these efforts suggest. Using the case of a popular social networking site, and concepts about the morality of technology, we disclose the ethics of Facebook as diffuse and multiple. In our conclusions we provide some reflections on the possibilities for action in light of this disclosure.

The ethics, aesthetics and practical politics of ownership in co-creative media

What is ‘best practice’ when it comes to managing intellectual property rights in participatory media content? As commercial media and entertainment business models have increasingly come to rely upon the networked productivity of end-users (Banks and Humphreys 2008) this question has been framed as a problem of creative labour made all the more precarious by changing employment patterns and work cultures of knowledge-intensive societies and globalising economies (Banks, Gill and Taylor 2014). This paper considers how the problems of ownership are addressed in non-commercial, community-based arts and media contexts. Problems of labour are also manifest in these contexts (for example, reliance on volunteer labour and uncertain economic reward for creative excellence). Nonetheless, managing intellectual property rights in collaborative creative works that are created in community media and arts contexts is no less challenging or complex than in commercial contexts. This paper takes as its focus a particular participatory media practice known as ‘digital storytelling’. The digital storytelling method, formalised by the Centre for Digital Storytelling (CDS) from the mid-1990s, has been internationally adopted and adapted for use in an open-ended variety of community arts, education, health and allied services settings (Hartley and McWilliam 2009; Lambert 2013; Lundby 2008; Thumin 2012). It provides a useful point of departure for thinking about a range of collaborative media production practices that seek to address participation ‘gaps’ (Jenkins 2006). However the outputs of these activities, including digital stories, cannot be fully understood or accurately described as user-generated content. For this reason, digital storytelling is taken here to belong to a category of participatory media activity that has been described as ‘co-creative’ media (Spurgeon 2013) in order to improve understanding of the conditions of mediated and mediatized participation (Couldry 2008). This paper reports on a survey of the actual copyrighting practices of cultural institutions and community-based media arts practitioners that work with digital storytelling and similar participatory content creation methods. This survey finds that although there is a preference for Creative Commons licensing a great variety of approaches are taken to managing intellectual property rights in co-creative media. These range from the use of Creative Commons licences (for example, Lambert 2013, p.193) to retention of full copyrights by storytellers, to retention of certain rights by facilitating organisations (for example, broadcast rights by community radio stations and public service broadcasters), and a range of other shared rights arrangements between professional creative practitioners, the individual storytellers and communities with which they collaborate, media outlets, exhibitors and funders. This paper also considers how aesthetic and ethical considerations shape responses to questions of intellectual property rights in community media arts contexts. For example, embedded in the CDS digital storytelling method is ‘a critique of power and the numerous ways that rank is unconsciously expressed in engagements between classes, races and gender’ (Lambert 117). The CDS method privileges the interests of the storyteller and, through a transformative workshop process, aims to generate original individual stories that, in turn, reflect self-awareness of ‘how much the way we live is scripted by history, by social and cultural norms, by our own unique journey through a contradictory, and at times hostile, world’ (Lambert 118). Such a critical approach is characteristic of co-creative media practices. It extends to a heightened awareness of the risks of ‘story theft’ and the challenges of ownership and informs ideas of ‘best practice’ amongst creative practitioners, teaching artists and community media producers, along with commitments to achieving equitable solutions for all participants in co-creative media practice (for example, Lyons-Reid and Kuddell nd.). Yet, there is surprisingly little written about the challenges of managing intellectual property produced in co-creative media activities. A dialogic sense of ownership in stories has been identified as an indicator of successful digital storytelling practice (Hayes and Matusov 2005) and is helpful to grounding the more abstract claims of empowerment for social participation that are associated with co-creative methods. Contrary to the ‘change from below’ philosophy that underpins much thinking about co-creative media, however, discussions of intellectual property usually focus on how methods such as digital storytelling contribute to the formation of copyright law-compliant subjects, particularly when used in educational settings (for example, Ohler nd.). This also exposes the reliance of co-creative methods on the creative assets storytellers (rather than on the copyrighted materials of the media cultures of storytellers) as a pragmatic response to the constraints that intellectual property right laws impose on the entire category of participatory media. At the level of practical politics, it also becomes apparent that co-creative media practitioners and storytellers located in copyright jurisdictions governed by ‘fair use’ principles have much greater creative flexibility than those located in jurisdictions governed by ‘fair dealing’ principles.

Fossil free Stanford: Universities, climate ethics, and fossil fuel divestment

There has been an international movement led by 350.org, Bill McKibben, and student groups to encourage schools, universities, and educational institutions to divest their endowments of fossil fuel stocks. The decision of Stanford University on coal divestment should an inspiration for elite universities around the world.

That’s Not For Our Kids: The strange death of philosophy and ethics in a low socioeconomic secondary school

This article reflects on the successes and failures of a new Philosophy and Ethics course in a low socioeconomic context in Perth, Western Australia, with the eventual demise of the subject in the school at the end of 2010. We frame this reflection within Deleuzian notions of geophilosophy to advocate for a Philosophy and Ethics that is informed by nomadic thought, as this offers a critical freedom for students to transform themselves and their society and suggests practical ways both of overcoming the prejudices which led to its demise and of student reluctance to engage in open discussion in class. We consider the demise of the course a ‘missed opportunity’ because it had so much potential to be transformative of student subjectivities in schools.

Saviour Siblings and the Regulation of Assisted Reproductive Technology: Harm, Ethics and Law

Advances in the field of Assisted Reproductive Technology (ART) have been revolutionary. This book focuses on the use of ARTs in the context of families who seek to conceive a matching sibling donor as a source of tissue to treat an existing sick child. Such children have been referred to as ‘saviour siblings’. Considering the legal and regulatory frameworks that impact on the accessibility of this technology in Australia and the UK, the work analyses the ethical and moral issues that arise from the use of the technology for this specific purpose. The author claims the only justification for limiting a family’s reproductive liberty in this context is where the exercise of reproductive decision-making results in harm to others. It is argued that the harm principle is the underlying feature of legislative action in Western democratic society, and as such, this principle provides the grounds upon which a strong and persuasive argument is made for a less-restrictive regulatory approach in the context of ‘saviour siblings’.

Literacy leadership and accountability practices: Holding onto ethics in ways that count

Despite the rhetoric of schools serving the needs of specific communities, it is evident that the work of teachers and principals is shaped by government imperatives to demonstrate success according to a set of standard ‘benchmarks’. In this chapter, we draw from our current study of new forms of educational leadership emerging in South Australian public primary schools to explore the ways in which test-based accountability requirements are being mediated by principals in schools that serve high poverty communities. Taking an institutional ethnography approach we focus on the everyday work of a principal and a literacy leader in one suburban primary school to show the complexity of the impact of national testing on practices of literacy leadership. We elaborate on the inescapable textual framings and tasks faced by the principal and literacy leader, and those that they create and modify – such as a common literacy agreement and ‘literacy chats’ between a literacy leader and classroom teacher – in order to ‘hold on to ethics’. We argue that while leaders’ and teachers’ everyday work is regulated by ‘ruling relations’ (Smith, 1999), it is also organic and responsive to the local context. We conclude with a reflection on the important situated work that school leaders do in mediating trans-local policies that might otherwise close down possibilities for engaging ethically with students and their learning in a particular school.

Guest editorial: End of life law, ethics, policy and practice

The International Conference on End of Life: Law, Ethics, Policy and Practice was held at Queensland University of Technology, Brisbane, Australia in August 2014. It was co-hosted by the Australian Centre for Health Law Research, the Dalhousie Health Law Institute (Canada) and the Tsinghua Health Law Research Center (China). The conference attracted almost 350 delegates from 26 countries and included representation from over a dozen different disciplines with an interest in end of life care.

The law and ethics of ‘self-quantified’ health information: An Australian perspective

This exploratory article examines the phenomenon of the ‘Quantified Self’—until recently, a subculture of enthusiasts who aim to discover knowledge about themselves and their bodies through self-tracking, usually using wearable devices to do so—and its implications for laws concerned with regulating and protecting health information. Quantified Self techniques and the ‘wearable devices’ and software that facilitate them—in which large transnational technology corporations are now involved—often involve the gathering of what would be considered ‘health information’ according to legal definitions, yet may occur outside the provision of traditional health services (including ‘e-health’) and the regulatory frameworks that govern them. This article explores the legal and regulatory framework for self-quantified health information and wearable devices in Australia and determines the extent to which this framework addresses privacy and other concerns that these techniques engender, along with suggestions for reform.