The authors of the ELSIcon special issue have advanced the conversation on ethics and genetics. Nevertheless, we have some concerns. Here, we respond specifically to Conley et al. (2023). We choose...

It is generally recognised that public health problems in the developing world are dire and that the rest of the world has a moral commitment to provide assistance. Yet many of the world’s poor are unable to access essential pharmaceuticals simply because products that are under patent are too expensive and cheaper generics are not available. One of the proposed solutions to this problem is to allow domestic manufacture of generic products in response to public health crises. However, this solution (...) will provide no assistance in countries that lack the capacity to manufacture pharmaceuticals. This article discusses the extensive international negotiations occurring during the last couple of years that seek to provide an appropriate balance between access rights and patent rights. (shrink)

_BMC Medical Ethics_ is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies. _BMC __Medical Ethics _is part of the _BMC_ series which publishes subject-specific journals focused on the needs of individual research communities across all areas of biology and medicine. We do not make editorial decisions on the basis of the interest of a study or (...) its likely impact. Studies must be scientifically valid; for research articles this includes a scientifically sound research question, the use of suitable methods and analysis, and following community-agreed standards relevant to the research field. Specific criteria for other article types can be found in the submission guidelines. _BMC series - open, inclusive and trusted_. (shrink)

Genomics is increasingly becoming an integral component of health research and clinical care. The perceived difficulties associated with genetic research involving Aboriginal and Torres Strait Islander people mean that they have largely been excluded as research participants. This limits the applicability of research findings for Aboriginal and Torres Strait Islander patients. Emergent use of genomic technologies and personalised medicine therefore risk contributing to an increase in existing health disparities unless urgent action is taken. To allow the potential benefits of genomics (...) to be more equitably distributed, and minimise potential harms, we recommend five actions: ensure diversity of participants by implementing appropriate protocols at the study design stage; target diseases that disproportionately affect disadvantaged groups; prioritise capacity building to promote Indigenous leadership across research professions; develop resources for consenting patients or participants from different cultural and linguistic backgrounds; and integrate awareness of issues relating to Indigenous people into the governance structures, formal reviews, data collection protocols and analytical pipelines of health services and research projects. (shrink)

International transfers of human biological material (biospecimens) and data are increasing, and commentators are starting to raise concerns about how donor wishes are protected in such circumstances. These exchanges are generally made under contractual material transfer agreements (MTAs). This paper asks what role, if any, should research ethics committees (RECs) play in ensuring legal and ethical conduct in such exchanges. It is recommended that RECs should play a more active role in the future development of best practice MTAs involving exchange (...) of biospecimens and data and in monitoring compliance. (shrink)

This book is a rich blend of analyses by leading experts from various cultures and disciplines. A compact introduction to a complex field, it illustrates biotechnology's profound impact upon the environment and society. Moreover, it underscores the vital relevance of cultural values. This book empowers readers to more critically assess biotechnology's value and effectiveness within both specific cultural and global contexts.

Women face extraordinary difficulty in seeking sterilization as physicians routinely deny them the procedure. Physicians defend such denials by citing the possibility of future regret, a well‐studied phenomenon in women’s sterilization literature. Regret is, however, a problematic emotion upon which to deny reproductive freedom as regret is neither satisfactorily defined and measured, nor is it centered in analogous cases regarding men’s decision to undergo sterilization or the decision of women to undergo fertility treatment. Why then is regret such a concern (...) in the voluntary sterilization of women? I argue that regret is centered in women’s voluntary sterilization due to pronatalism or expectations that womanhood means motherhood. Women seeking voluntary sterilization are regarded as a deviant identity that rejects what is taken to be their essential role of motherhood and they are thus seen as vulnerable to regret. (shrink)

This conversation between two scholars of international law focuses on the contemporary realities of feminist analysis of international law and on current and future spaces of resistance. It notes that feminism has moved from the margin towards the centre, but that this has also come at a cost. As the language of women’s rights and gender equality has travelled into the international policy worlds of crisis management and peace and security, feminist scholars need to become more careful in their analysis (...) and find new ways of resistance. While noting that we live in dangerous times, this is also a hopeful discussion. (shrink)

We suggest edits to Part Four of the Ethical and Religious Directives (ERDs) to help the US bishops address and clarify essential Church teachings on specific beginning-of-life issues facing Catholic health care today. As a teaching tool, Part Four must be updated so that Catholic health care professionals and the lay faithful can understand and apply Church teachings to new ethical challenges. Further, more direction and clarity from the ERDs is needed in applying general principles to assisted procreative technologies, pre- (...) and post-viability induction of labor, ectopic pregnancies, genetic screening and diagnosis, and contraception. Catholic health care clinicians and administrators also need to receive ongoing instruction on the ERDs’ teachings as well as the theological and philosophical rationales that undergird them. (shrink)

This book presents an overview of these studies and attempts to clarify apparently disparate results by placing them in a coherent theoretical framework.

The figure of Donna Haraway’s cyborg continues to loom large over contemporary feminist engagements with questions of technology. Across a range of analytical projects ranging from cosmetic surgery to employment practices it has come to be one of the defining figurations through which the social and discursive construction of bodies in a technological age are theorized. Indeed, it has become a widely accepted and largely unquestioned orthodoxy of postmodern feminist thinking. Not only has the cyborg offered a theoretical framework for (...) exploring the feminist possibilities of technologies, it has provided a focus for situating questions of technology and bodies into broader feminist theoretical considerations of the structures of knowledge, particularly those of binary oppositions and the logic of identity. While a productive and influential intervention into feminist theorizing, the cyborg is not without limitations. One of these is pointed out by Kirby (1997) as a failure to break convincingly with the logic ofidentity in the way Haraway theorizes the intersection of bodies and technologies in the fabrication of the cyborg. This article examines that criticism and then explores the possibilities which Deleuze and Guattari’s concept of assemblageoffers as a mean of thinking the meetings of bodies and technologies beyond binary oppositions. (shrink)

The micro-regional focus of bioregionalism is a small unit of physical space, typically a watershed region. In bioregional discourse, natural systems become metaphors for cultural coherence. However, when we look for laws embedded in the natural world, those that are found do not then reveal themselves as principles which apply to systems of culture. Further, within most individuals, the sense of regional identity spans several scales because our past narratives and present affiliations span several localities. Humans are not immersed in (...) singular niches, nor is the bioregionalist an existential, primordial localist, for his or her choice has been crafted. (shrink)

Many opponents of BIG programs believe that receiving guaranteed subsistence income would act as a strong disincentive to work. In contrast, various areas of empirical research in psychology suggest that a BIG would not lead to meaningful reductions in work. To test these competing predictions, a comprehensive review of BIG outcome studies reporting data on adult labor responses was conducted. The results indicate that 93 % of reported outcomes support the prediction of no meaningful work reductions when the criterion for (...) support is set at less than a 5 % decrease in either average hours worked per week or the rate of labor participation. Overall, these results indicate that adult labor responses would show no substantial impact following a BIG intervention. (shrink)

The 'business judgement rule ' requires corporate directors only to act with honesty and reasonable care in the interest of shareholders. A stronger ' fiduciary ' duty is required where one party requires protection from another. This paper argues that where corporations take risks with the environment, directors are fiduciaries. Stakeholders are in that case the general public, future generations and other species, which have not voluntarily accepted risk and cannot limit liability. Recognition of fiduciary duty in such cases is (...) consistent with recent trends in the law of equity. It would require all economic activities to move from open to closed systems. (shrink)

The endoplasmic reticulum (ER) organelle is the key intracellular site of both protein and lipid biosynthesis. ER dysfunction, termed ER stress, can result in protein accretion within the ER and cell death; a pathophysiological process contributing to a range of metabolic diseases and cancers. ER stress leads to the activation of a protective signalling cascade termed the Unfolded Protein Response (UPR). However, chronic UPR activation can ultimately result in cellular apoptosis. Emerging evidence suggests that cells undergoing ER stress and UPR (...) activation can release extracellular signals that can propagate UPR activation to target tissues in a cell non‐autonomous signalling mechanism. Separately, studies have determined that the UPR plays a key regulatory role in the biosynthesis of bioactive signalling lipids including sphingolipids and ceramides. Here we weigh the evidence to combine these concepts and propose that during ER stress, UPR activation drives the biosynthesis of ceramide lipids, which are exported and function as cell non‐autonomous signals to propagate UPR activation in target cells and tissues. (shrink)

This study aims to address how and when retailers’ sustainability efforts translate into positive consumer responses. Hypotheses are developed and tested through a scenario-based experiment among 672 consumers. Retailers’ assortment sustainability and distribution sustainability are manipulated. Retailers’ sustainability efforts lead to positive consumer responses via two underlying mechanisms: consumers’ identification with the store and store legitimacy. The effects of sustainability efforts are strengthened if consumers have personal norms favoring shopping at environmentally friendly stores. Remarkably, when controlling for moderation by personal (...) norms, social norms weaken the effects. The findings show that traditional marketing mix elements provide opportunities for retailers to improve their organizations’ bottom line and positively affect consumer well-being. This study helps retailers decide whether or not to invest in and communicate about sustainability. Past research has shown the clear potential for positive consumer responses to firms’ sustainability efforts, but little is known about the underlying mechanisms and the conditions under which such responses take place. This study advances theory by examining personal and social factors as mediators and moderators of the retailers’ sustainability efforts–consumer responses relationship. (shrink)

Conserving the vitality of suffering: addressing family constraints to illness conversationsWhen persons are confronted with life‐threatening or chronic illness, there is always a possibility that family members other than the person experiencing the illness also suffer as they attempt to manage their own distress. This paper describes exemplars from a hermeneutic study that explored therapeutic conversations between nurses and families who were living with a member experiencing ischaemic heart disease. These conversations uncovered the complexity of both individual and family suffering (...) following acute cardiac illness events, and called attention to nursing practices that addressed some of the ways that family members were constrained from having conversations about the illness. When spaces were created for these conversations to occur, possibilities for making sense of illness and suffering were revealed as vital. These understandings support the efforts of family members to sustain and conserve family relationships in the face of illness and suffering, and inform both the professional and personal lives of nurses. (shrink)

Implicit learning is said to occur when a person learns about a complex stimulus without necessarily intending to do so, and in such a way that the resulting knowledge is difficult to express. Over the last 30 years, a number of studies have claimed to show evidence of implicit learning. In more recent years, however, considerable debate has arisen over the extent to which cognitive tasks can in fact be learned implicitly. Much of the debate has centred on the questions (...) of how unconscious, and how abstract, is implicitly acquired knowledge? The aim of this book is to provide students and researchers with a self-contained and balanced summary of the various theoretical and empirical positions that are currently shaping this exciting area of research. (shrink)

Issues of sexual orientation elicit ethical debates in schools and society. In jurisdictions where a legal right has not yet been established, one argument commonly rests on whether schools ought to address issues of same-sex relationships and marriage on the basis of civil equality, or whether such controversial issues ought to remain in the private sphere. Drawing upon an antiperfectionist liberal framework, Dianne Gereluk argues that schools have an obligation to educate students in two important ways. First, students must (...) develop an awareness and understanding of the range of acceptable and permissible ways of life that may lead to human flourishing. Second, students must understand the requisite protections and recognition afforded to individuals in a pluralist society. (shrink)

The diagnosis was Turn-to-Stone disease. None of us had heard of it and rushed to Google. Her body calcified itself, painfully turning tissue to bone. She planned her funeral; turning stone to ashes.Meanwhile Viagra four times a day took blood to her hands and feet. “Viagra!” she’d joke, “you’d think I was hard..

Set within the socio-political context of standards-based education reform, this article explores the constitutive role of teaching standards in the production of the practice and identity of the ‘accomplished’ teacher. It contrasts two idioms for thinking about and studying these standards, the representational and the performative. Utilising the material-semiotic approach of actor-network theory, it addresses the issue of how the representational idiom of teaching standards has become so authoritative that it readily eclipses other ways to think and ‘do’ them. In (...) tracing the development of a specific set of teaching standards as part of a national research project, the argument is made that standards should be understood as performative knowledge and identity practices. And, accounting them should also be performative. Accordingly, attention is given to key locales in which this development is taking place. Teaching standards emerge as ontologically variable and it is struggles around this variability that can create conditions for a renewed practice and politics of education reform. (shrink)

The aim of this article is to explore the worth of a materialist/posthumanist approach to ethics, specifically affirmative ethics, within the field of education. I work empirical material that ‘does’ this ethics in classrooms and draw on Deleuze’s ethically guided materialism as taken up by Braidotti, to gain purchase on it. Defined as a relational matter of human and non-human powers of acting in pursuit of affirmative values, affirmative ethics focuses up relations, forces and affects. It poses considerable challenges to (...) a normalised construction of ethics as located solely within a constituted human subject with moral intentionality as its core. Affirmative ethics presents empirically as an emergent property of relational assemblages of human and more than human elements that bring ethical subjectivity into effect. Pedagogy and curriculum perform a constitutive role in these assemblages, as does pedagogic affect, showing how this ethics can be activated. A materialist affirmative ethics makes for a multi-faceted and generative practice of ethics. Oriented to collectivity and with relationality ‘built-in’, it has the potential to play a significant role in the reconstitution of individualised subjectivity which neoliberal modes of governance continue to advance in education. (shrink)

How to live at multiple scales? Immersed in infrastructure, economics and politics functioning at a scale beyond our immediate experience, our capacities for reason and abstraction have led to the geological era of the Anthropocene. Yet it is also these capacities that mean we are the singular planetary species with any chance of developing systems that can assure less rather than more devastation as a result of these planetary shifts. This essay explores the ways in which we can use our (...) capacity for reason, abstraction, to design what a future ought to be: open to regular revision in response to our practical behaviours given the persistent contingency of the conditions in which we are immersed. (shrink)

Sixteen Canadian men and women, part of eight intact couples who had experienced severe and recurrent wife assault, were interviewed individually regarding their worst experience of violence. The self-reports of both spouses of one of these couples is presented and analyzed with a view towards isolating the emerging constituents of their narratives. Additionally, preliminary findings resulting from the analysis of all of the couple's self-reports are presented in the second part of the paper. A gendered reconstruction of their narratives emerges (...) that mirrors the different positions men and women hold in experiences of wife assault. Finally, the main constituents derived from all the participant's selfreports are analyzed and discussed. (shrink)

What does peace mean in today’s world of endless wars? Why has the project of ‘universal peace’, so ardently hoped for by the drafters of the UN Charter in 1945, failed so profoundly? I reflect on these questions through three stories of peace. The first is told by a series of four stained-glass windows in the Peace Palace in The Hague; the second is of the world’s demilitarised zones; and the third of a peace community in Colombia. These stories provide (...) a springboard to reflect on how we might rethink peace in the context of today’s world, drawing on feminist, queer and postcolonial analyses. My discussion exposes the limits of the UN Charter’s approach to peace, and the impossibility of its methods ever achieving ‘universal peace’. The Charter’s reliance on militarism and collective enforcement, as well as its commitment to peace as an evolutionary process, maintain rather than dismantle global hierarchies of domination. I also question the dualism of war and peace, which obscures much of the violence of what we call peace. The task of rethinking peace is urgent. To do so we need to go beyond the worlds we know, beyond the confines of law and the inevitability of quotidian hierarchies of gender, sexuality and race, to invent new methods of peace-making, outside the ‘frames of war’. (shrink)

This essay uses the phenomenal advent of women's climbing as a paradigm case for integrating feminism and phenomenology, and for analyzing how women experience and evolve free movement and existence. In contrast to the paradigm set by Iris Marion Young's “Throwing like a Girl,” it stresses the category of the lived body over the category of gender, and it reveals how women, by employing and cultivating the body's motility and spatiality, engage and transcend the limits of crux situations.

Research ethics principles and regulations typically have been applied to the protection of individual human subjects. Yet, new paradigms of research that include the place-based community and cultural groups as partners or participants of environmental research interventions, in particular, require attention to place-based identities and geographical contexts. This paper argues the importance of respecting “place” within human subjects protections applied to communities and cultural groups as part of a critical need for research ethics and cultural competence training for graduate research (...) students. These protections and benefits are extensions of the Belmont Principles and have been included in recent recommendations from research regulatory committees. (shrink)

Self-protection can have psychological and behavioral implications. We contrast them with the implications of a self-enhancement strategy. Both self-enhancement and self-protection have costs and benefits as survival strategies, and we identify some of the emotional, cognitive, and behavioral tradeoffs associated with the differential preferences for each strategy. New analyses on a large existing data set confirm the target article's hypothesis that women are more attuned than men to potential negative consequences of innovations.

This article investigates differences in pragmatic abilities between children who have cochlear implants and their hearing peers. Recordings of 10-minute conversations between 10 children with cochlear implants and a hearing peer were transcribed. Conversation analysis provides insights into interactional troubles not evident in broader measures of number of turns, requests for clarification, topic initiation and so on used in earlier studies. How the children go about repair proves of particular interest; other-initiated repair that prompts the speaker to repeat the prior (...) utterance is, not surprisingly, more commonly produced by the children who have cochlear implants. The key contribution of this article, however, is to detail examples where children with cochlear implants choose not to initiate repair of an error made by their hearing friend. The discussion not only highlights the interactional cost of initiating repair, but also demonstrates that not doing repair can cause a breakdown in conversation. (shrink)