Debates about what constitutes benefits in human research continue to be less informed due to a lack of empirical evidence from the developing world. This study aimed to explore what constitutes benefits in HIV vaccine trials in Tanzania and examine inherent ethical implications. A qualitative case study design was deployed and a total of 29 purposively selected study participants comprising of experienced researchers, institutional review board members and community advisory board members were included. Collected data were analyzed by thematic analysis (...) aided by computer software: MAXQDA version 20.4.0. The study findings indicate that there is a growing appreciation of benefits beyond actual vaccines to include 1) capacity building at individual, community, institutional and regulatory levels; and 2) non‐capacity building related benefits such as strengthened collaborations, ancillary care and employment opportunities. So, as the struggle for viable HIV vaccines continues, other benefits that have accrued from such trials are not to be blindsided especially for developing countries like Tanzania. (shrink)

Institutional review boards and investigators are used to talking about risks of harm. Both low risks of great harm and high risks of small harm must be disclosed to prospective subjects and should be explained and categorized in ways that help potential subjects to understand and weigh them appropriately. Everyone on an IRB has probably spent time at meetings arguing over whether a three-page bulleted list of risk description is helpful or overkill for prospective subjects. Yet only a small fraction (...) of all the time and attention lavished on risk disclosure has been devoted to discussing whether and when potential benefit to subjects can reasonably be claimed and, if so, how it should be described in the consent form and process.Traditionally, IRBs and regulators have worked to ensure that clear lines can be drawn between research that, by definition, carries no potential for direct benefit — because it uses healthy volunteers or because it is not foreseeably focused on the development of treatments — and research that does have the development of effective treatments as its goal. (shrink)

This article outlines one element of the work carried out by a group of Canadian ethicists [Practicing Healthcare Ethicists Exploring Professionalization (PHEEP)]—to begin the deliberative development of a set of practice standards for the Canadian context. To provide a backdrop, this article considers the nature and purpose of practice standards as they are used by regulated professions and how they relate to other practice-defining texts such as competencies, codes of ethics and statements of scope of practice. A comparative review of (...) current practice-defining documents developed within the field of healthcare ethics practice suggests that practice standards are not yet among them. A review of the practice standards and related texts articulated by various other professions, both regulated and not yet regulated, indicates that while these groups of documents serve to define and clarify various dimensions of practice in individual disciplines, there is no clear standardized approach to the terminology, structure and content across these documents. It is suggested that this variability presents a degree of flexibility that ought to allay many of the anxieties that have been expressed about practice standards in healthcare ethics: practitioners, PHEs, are at liberty to define their practice as they see fit, albeit within reasonable parameters if regulation is sought. A proposal for a draft structure and potential content for Canadian healthcare ethics practice standards is offered. (shrink)

Objectives The study uses a qualitative empirical method to define Health Research for Development. This project explores the perspectives of stakeholders in an international health research partnership operating in Ghana and Tanzania. Methods We conducted 52 key informant interviews with major stakeholders in an international multicenter partnership between GlaxoSmithKline and the global health nonprofit organisation PATH and its Malaria Vaccine Initiative program,. The respondents included teams from four clinical research centres and various collaborating partners. This paper analyses responses to the (...) question: What is Health Research for Development? Results Based on the stakeholders’ experience the respondents offered many ways of defining Health Research for Development. The responses fell into four broad themes: i) Equitable Partnerships; ii) System Sustainability; iii) Addressing Local Health Targets, and iv) Regional Commitment to Benefit Sharing. Conclusion Through defining Health Research for Development six key learning points were generated from the four result themes: 1) Ensure there is local research leadership working with the collaborative partnership, and local healthcare system, to align the project agenda and activities with local research and health priorities; 2) Know the country-specific context - map the social, health, legislative and political setting; 3) Define an explicit development component and plan of action in a research project; 4) Address the barriers and opportunities to sustain system capacity. 5) Support decentralised health system decision-making to facilitate the translation pathway; 6) Govern, monitor and evaluate the development components of health research partnerships. Overall, equity and unity between partners are required to deliver health research for development. (shrink)

What mental disorder means is controversial. I attempt to solve that controversy by applying the method of defining a phenomenon in terms of the goals we have for demarcating that phenomenon from other phenomena to the case of mental disorder. I thus address the question about the nature of mental disorder by paying attention to the goals we have for demarcating mental disorder. I maintain that these goals, which embody the reasons why we consider mental disorder a significant phenomenon for (...) us, have a common denominator: they refer to psychological capacity for autonomy. I present a conceptual foundation for defining mental disorder on the basis of that psychological capacity and argue that this way of understanding the nature of mental disorder avoids the main problems of the central contemporary theories of mental disorder. Then I explain why this conception of the nature of mental disorder is not undermined by anti-psychiatric criticisms to the effect that mental illness does not exist, that the mentally ill should not be treated differently from others, and that seeing problems of the mentally disordered as psychiatric problems is unjustified medicalization. I conclude by suggesting that the presented conceptual foundation for defining mental disorder would benefit from being complemented by results of empirical psychology. (shrink)

What should be the content of a package of health care services that we would want to guarantee to all Americans? This question cannot be answered adequately apart from also addressing the issue of fair health care rationing. Consequently, as I argue in this essay, appeal to the language of "basic," "essential," "adequate," "minimally decent," or "medically necessary" for purposes of answering our question is unhelpful. All these notions are too vague to be useful. Cost matters. Effectiveness matters. The clinical (...) circumstances of a patient matters. But what we must ultimately determine is what we mutually agree are the just claims to needed health care of each American in a relatively complex range of clinical circumstances. Answering this question will require a public moral conversation, a fair process of rational democratic deliberation aimed at defining both just claims to needed health care and just limits. (shrink)

In Dobbs v. Jackson, the Supreme Court found that ‘the Constitution does not confer a right to abortion.’ Rather, individual states must determine whether a right to abortion exists. Following Dobbs, state abortion laws have diverged significantly. This has generated confusion over what the law permits. Consequently, some pregnant women reportedly have not received timely treatment for life-threatening conditions. Clear guidance on abortion policy is essential, therefore, since continued confusion risks lives. Sweeping calls to improve patient access to abortion will (...) not provide clear guidance, however, since ‘abortion’ is defined differently across jurisdictions. In fact, there are six variables to consider when defining ‘abortion’: (1) the definition of ‘pregnancy,’ (2) whether prescribing abortifacients counts as an abortion, (3) whether abortion successfully terminates pregnancy, (4) whether abortion has some characteristic intention, (5) whether providers must know that they likely will harm fetuses, and (6) whether providers must know that their patients are pregnant. States address each variable differently, so ‘abortion’ means different things across jurisdictions. One may respond that legislators are solely to blame for confusion here, since medical experts, by contrast, possesses a clear definition of ‘abortion.’ Not so. ‘Abortion’ is defined inconsistently throughout medical literature too. As such, both legal and medical domains would benefit from careful discussions of ‘abortion.’ Attending to the six variables identified here is a good starting place. In this essay, I suggest how best to think about each and I propose a definition of ‘abortion’ well-suited for developing clear abortion policy in a polarized society. (shrink)

It probably should not be surprising, in this time of soaring medical costs and proliferating technology, that an intense debate has arisen over the concept of medical futility. Should doctors be doing all the things they are doing? In particular, should they be attempting treatments that have little likelihood of achieving the goals of medicine? What are the goals of medicine? Can we agree when medical treatment fails to achieve such goals? What should the physician do and not do under (...) such circumstances? Exploring these issues has forced us to revisit the doctor-patient relationship and the relationship of the medical profession to society in a most fundamental way. Medical futility has both a quantitative and qualitative component. I maintain that medical futility is the unacceptable likelihood of achieving an effect that the patient has the capacity to appreciate as a benefit. Both emphasized terms are important. A patient is neither a collection of organs nor merely an individual with desires. Rather, a patient (from the word to suffer ) is a person who seeks the healing (meaning to make whole ) powers of the physician. The relationship between the two is central to the healing process and the goals of medicine. Medicine today has the capacity to achieve a multitude of effects, raising and lowering blood pressure, speeding, slowing, and even removing and replacing the heart, to name but a minuscule few. But none of these effects is a benefit unless the patient has at the very least the capacity to appreciate it. Sadly, in the futility debate wherein some critics have failed or refused to define medical futility an important area of medicine has in large part been neglected, not only in treatment decisions at the bedside, but in public discussions—comfort care—the physician’s obligation to alleviate suffering, enhance well being and support the dignity of the patient in the last few days of life. (shrink)

Background: Compassion has long been advocated as a fundamental element in nursing practice and education. However, defining and translating compassion into caring practice by nursing students who are new to the clinical practice environment as part of their educational journey remain unclear. Objectives: The aim of this study was to explore how Chinese baccalaureate nursing students define and characterize compassionate care as they participate in their clinical practice. Methods: A descriptive qualitative study design was used involving a semi-structured in-depth interview (...) method and qualitative content analysis. Twenty senior year baccalaureate nursing students were interviewed during their clinical practicum experience at four teaching hospitals. Ethical considerations: Permission to conduct the study was received from the Institutional Review Boards and the participating hospitals. Results: Baccalaureate nursing students defined and characterized compassionate care as a union of “empathy” related to a nurse’s desire to “alleviate patients’ suffering,” “address individualized care needs,” “use therapeutic communication,” and “promote mutual benefits with patients.” Students recognized that the “practice environment” was characterized by nurse leaders’ interpersonal relations, role modeling by nurses and workloads which influenced the practice of compassionate care by nursing personnel. Conclusion: Compassionate care is crucial for patients, nurses, and students in their professional development as well as the development of the nursing profession. In order to provide compassionate care, a positive practice environment promoted by hospital administrators is needed. This also includes having an adequate workforce of nurses who can role model compassionate care to students in their preceptor role while meeting the needs of their patients. (shrink)

Despite increasing interests and urgent needs for quality end-of-life care, there is no exact definition of what is the interval referred to as end of life or what end-of-life care is. The purpose of this article is to report our examination of terms related to end-of-life care and define end-of-life care from nursing ethics perspectives. Current terms related to end-of-life care, such as terminal care, hospice care, and palliative care, are based on a medical model and are restrictive in terms (...) of diagnosis and prognosis. Using codes of ethics for nurses as a framework, we attempt to identify people to whom nurses are responsible to provide end-of-life care and develop a definition of end-of-life care that is more inclusive and applicable to a broader range of people who would benefit from end-of-life care by nurses and other health-care providers. (shrink)

Nanotechnology, which involves manipulation of matter on a ‘nano’ scale, is considered to be a key enabling technology. Medical applications of nanotechnology are expected to significantly improve disease diagnostic and therapeutic modalities and subsequently reduce health care costs. However, there is no consensus on the definition of nanotechnology or nanomedicine, and this stems from the underlying debate on defining ‘nano’. This paper aims to present the diversity in the definition of nanomedicine and its impact on the translation of basic science (...) research in nanotechnology into clinical applications. We present the insights obtained from exploratory qualitative interviews with 46 stakeholders involved in translational nanomedicine from Europe and North America. The definition of nanomedicine has implications for many aspects of translational research including: fund allocation, patents, drug regulatory review processes and approvals, ethical review processes, clinical trials and public acceptance. Given the interdisciplinary nature of the field and common interest in developing effective clinical applications, it is important to have honest and transparent communication about nanomedicine, its benefits and potential harm. A clear and consistent definition of nanomedicine would significantly facilitate trust among various stakeholders including the general public while minimizing the risk of miscommunication and undue fear of nanotechnology and nanomedicine. (shrink)

This article discusses recent disagreements over the correct formulation of physicalism. Although there appears to be a consensus outside those who discuss the issue that physicalists believe that what exists is what is countenanced by physics, as we will see, this orthodoxy faces an important puzzle now frequently referred to as 'Hempel's Dilemma'. After surveying the historical trajectory from Enlightenment-era materialism to contemporary physicalism, I examine several mainstream approaches that respond to Hempel's dilemma, and the benefits and drawbacks of each.

In this paper we present a new proposal for defining actual causation, i.e., the problem of deciding if one event caused another. We do so within the popular counterfactual tradition initiated by Lewis, which is characterised by attributing a fundamental role to counterfactual dependence. Unlike the currently prominent definitions, our approach proceeds from the ground up: we start from basic principles, and construct a definition of causation that satisfies them. We define the concepts of counterfactual dependence and production, and put (...) forward principles such that dependence is an unnecessary but sufficient condition for causation, whereas production is an insufficient but necessary condition. The resulting definition of causation is a suitable compromise between dependence and production. Every principle is introduced by means of a paradigmatic example of causation. We illustrate some of the benefits of our approach with two examples that have spelled trouble for other accounts. We make all of this formally precise using structural equations, which we extend with a timing over all events. (shrink)

Until relatively recently, few democrats had much to say about the constitution of the ‘demos' that ought to rule. A number of recent writers have, however, argued that all those whose interests are affected must be enfranchised if decision-making is to be fully democratic. This article criticizes this approach, arguing that it misunderstands democracy. Democratic procedures are about the agency of the people so only agents can be enfranchised, yet not all bearers of interests are also agents. If we focus (...) on agency, rather than who is affected, then this leads us to focus on the permissible limits of action, rather than who makes the decision. Just as individual sovereignty is ordinarily limited by the requirement not to injure others, we may apply similar restrictions to what a demos can permissibly do. Thus, any collection of individuals may choose to regulate their affairs collectively for mutual benefit, but should be prohibited from imposing negative externalities on outsiders. On this view, the constitution or definition of the demos is arbitrary, from the democratic point of view. Moreover, democracy does not require the expansion of the franchise, unless injuries cannot be avoided. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy and Rhetoric 36.2 (2003) 103-108 [Access article in PDF] Defining, Using, and Challenging the Rhetorical Tradition Alisse Theodore Portnoy "What counts as 'the tradition'?" was the question that provoked this series of essays. Several of us attended a retreat sponsored by the Rhetoric Society of America, and we had dutifully split into smaller groups in an attempt to define or mark rhetoric as a discipline. Patricia Bizzell and (...) Bruce Herzberg had recently published the second edition of their The Rhetorical Tradition, and Michael Leff wanted to know what criteria Bizzell and Herzberg used as they revised the tradition. Bizzell was part of the group and responded. Jacqueline Jones Royster also responded to the opening question as the terrain shifted from defining to using and—quite naturally for everyone in the room—challenging the tradition. Maurice Charland soon entered into this Burkean parlor, despite his refusal to call rhetoric a discipline.One product of this ongoing conversation was a panel at the 2002 RSA biennial conference, from which the essays in this special issue of Philosophy & Rhetoric emerged. In their essays, Bizzell (English), Charland (Communication Studies), Leff (Communication Studies), and Royster (English) agree on several key points, the most basic of which are not only the existence but also the dynamic nature of a rhetorical tradition. The essayists agree that contemporary users of the tradition have agency in its constitution, and that texts by "performers" as well as by rhetorical theorists have a place in the tradition. But all of the essays have different starting points and offer us myriad ways to think about the rhetorical tradition.Patricia Bizzell writes with a unique perspective, having, as she says, edited the tradition—twice. In "Editing the Rhetorical Tradition," Bizzell takes stock and quickly accounts for us her sense of the "traditional tradition," or the tradition's blue chip stocks, and then offers tips on high risk and growth stocks. Playing with the stock market metaphor, Bizzell imagines [End Page 103] as high-risk stocks the texts or authors who have been marginal players, figures for whom presence is assured but reputation is not. Their reputations fluctuate depending on the ways "they can be made to serve the cultural preferences of those in power." Also contributing to what Bizzell calls "new traditions" are "thinkers who were practically unknown to traditional historians of rhetoric, sometimes because we did not have the methodological and pedagogical approaches necessary to construe their texts as rhetoric and sometimes because their work itself was hidden from scholarly view, fragmented, or lost." Bizzell outlines three ways these "growth stocks" enter into the tradition as she acknowledges the "whole new set of [scholarly] priorities" these texts often require.But just the novelty of these texts can pose challenges. Bizzell uses an exchange that occurred during the question period of the RSA session to suggest that texts might appear more abstract and philosophical, and therefore (mistakenly) more complex and valuable, simply "because we have the benefit of generations of scholarship and pedagogy assisting us to read these texts as rhetorical theory." Bizzell also argues that a metacritical awareness of the constraints upon language use makes a text theoretical even as it seems primarily "performative." In other words, more than a few "new tradition" texts count as contributing to rhetorical theory because they advocate non-traditional rhetorical practices or non-traditional access to conventional rhetorical spaces in the performance of the text.Bizzell reports the increased inclusion of these "growth stocks," the "thinkers who were practically unknown," even as she admits that reviewers for the second edition of The Rhetorical Tradition asked for more, not less, of the traditional tradition. And so as she concludes Bizzell refuses to see the composition of the tradition as a matter of contention or animosity. Rather, according to Bizzell, the tradition shifts "as our needs and interests change," based on choices "aris[ing] out of complex cultural factors relating to gender, race, social class, national identity, and more."Since anthologies like The Rhetorical Tradition play such a large part in the evolution of the rhetorical tradition, Bizzell claims some... (shrink)

It is becoming increasingly common for authoritarian regimes to leverage digital technologies to surveil, repress and manipulate their citizens. Experts typically refer to this practice as digital authoritarianism (DA). Existing definitions of DA consistently presuppose a politically repressive agent intentionally exploiting digital technologies to pursue authoritarian ends. I refer to this as the intention-based definition. This paper argues that this definition is untenable as a general description of DA. I begin by illustrating the current predominance of the intention-based definition (Section (...) 2). Section 3 then presents four counterexamples to this definition: benign surveillance; digital sovereignty; attention-harvesting algorithms; and tech-induced loneliness. In each case, we witness authoritarianism being promoted by digital technologies without any evidence of this being intentionally caused by politically repressive agents. Based on these observations, I contend that the intention-based definition is underinclusive and is therefore unsustainable. Section 4 outlines an improved definition of DA – what I call the promotion-based definition. Since this more expansive definition does not posit intentional, politically repressive agency as a precondition of DA, it can accommodate the counterexamples discussed in Section 3. Moreover, it enables us to catch a broader spectrum of cases of DA, such as tech-induced loneliness, which those adhering to the intention-based definition are prone to overlook. After outlining further practical benefits of the promotion-based definition, I argue that we still need to distinguish between intentional and unintentional forms of DA since they call for distinct types of remedial action. -/- . (shrink)

Recent discussions surrounding the conceptualising of disability has resulted in a stalemate between British sociologists and philosophers. The stagnation of theorizing that has occurred threatens not only academic pursuits and the advancement of theoretical interpretations within the Disability Studies community, but also how we educate and advocate politically, legally, and socially. More pointedly, many activists and theorists in the UK appear to believe the British social model is the only effective means of understanding and advocating on behalf of people with (...) disabilities. This model, largely reliant upon materialist research traditions, contends that disability is a form of social oppression and hence, is a phenomenon that should be conceptualised in social terms. Individual properties such as impairments are disregarded as they are viewed to be unimportant in the analysis of the social causes of disability. Concurrently, many bioethicists and philosophers have embraced what Tom Shakespeare has classified as an ‘Interactional Approach’ to disability—that “the experience of a disabled person results from the relationship between factors intrinsic to the individual, and the extrinsic factors arising from the wider context in which she finds herself”. I intend to demonstrate that the benefits of the British social model are now outweighed by its burdens. I suggest, as Jerome Bickenbach has, that while it may be somewhat churlish to critique the social model in light of its political success, taken literally, it implies that people with disabilities require no additional health resources by virtue of their impairments. Despite the eloquent arguments that have preceded me by interactional theorists, none have been accepted as evidence of fallacious reasoning by British social model theorists. This article is an attempt to clarify why it is that the types of arguments British social model theorists have been offering are misguided. I suggest that the British social model, unlike an interactional approach, is unable to provide a realistic account of the experience of disability, and subsequently, unable to be properly utilized to ensure justice for people with disabilities. (shrink)

Ever since the early decades of this century, there have emerged a number of competing schools of ecology that have attempted to weave the concepts underlying natural resource management and natural-historical traditions into a formal theoretical framework. It was widely believed that the discovery of the fundamental mechanisms underlying ecological phenomena would allow ecologists to articulate mathematically rigorous statements whose validity was not predicated on contingent factors. The formulation of such statements would elevate ecology to the standing of a rigorous (...) scientific discipline on a par with physics. However, there was no agreement as to the fundamental units of ecology. Systems ecologists sought to identify the fundamental organization that tied the physical and biological components of ecosystems into an irreducible unit: the ecosystem was their fundamental unit. Population ecologists sought, instead, to identify the biological mechanisms regulating the abundance and distribution of plant and animal species: to these ecologists, the individual organism was the fundamental unit of ecology, and the physical environment was nothing more than a stage upon which the play of individuals in perennial competition took place. As Joel Hagen has pointed out, the two schools were thus dividied by fundamentally different and irreconcilable assumptions about the nature of ecosystems.Notwithstanding these divisive efforts to elevate the image of ecology, the discipline remained in the shadows of American academia until the mid-1960s, when systems ecologists succeeded in projecting ecology onto the national scene. They did so by seeking closer involvement with practical problems: they argued before Congress that their approach to the theoretical problems of ecology was uniquely suited to the solution of the impending “environmental crisis.” With the establishment of the International Biological Program, they succeeded in attracting unprecedented levels of funding for systems ecology research. Theoretical population ecologists, on the other hand, found themselves consigned to the outer regions of this new institutional landscape. The systems ecologists' successful capture of the limelight and the purse brought the divisions between them and population ecologists into sharper relief — hence the hardening of the division of ecology observed by Hagen.45I have argued that the population biologist Richard Levins, prompted by these institutional developments, sought to challenge the social position of systems ecology, and to assert the intellectual priority of theoretical population ecology. He attempted to do so by articulating a nontrivial and rather carefully thought out classification of ecological models that led to the disqualification of systems analysis as a legitimate approach to the study of ecological phenomena. I have suggested that — ultimately —Levins's case against systems analysis in ecology rested on the view that an aspiration to realism and prediction was incompatible with an interest in theoretical issues, a concern that he equated with the search for generality. He sought to reinforce this argument by exploiting the fact that systems ecologists had staked their future on the provision of technical solutions to the problems of the “environmental crisis”: he associated systems ecologists' aspiration to realism and precision with a concern for practical issues, trading on the widely accepted view that practical imperatives are incompatible with the aims of scientific inquiry.46 These are plausible, but nonetheless questionable, claims which have now become an integral part of ecological knowledge. And finally, I hope to have shown how even the most abstract levels of scientific argument are shaped by political considerations, and how discussions of the conceptual development of modern ecology might benefit from a greater consideration of its historical and social dimensions.47. (shrink)

We argue that the current ethical and regulatory framework for permissible risk levels in pediatric research can be helpfully understood in terms of children’s moral right to adequate protection from harm. Our analysis provides a rationale for what we propose as the highest level of permissible risk in pediatric research without the prospect of direct benefit: what we call “relatively minor” risk. We clarify the justification behind the usual standards of “minimal risk” and “a minor increase over minimal risk” (...) and explain why it is permissible to impose any risks at all on child participants who do not stand to benefit directly from enrollment in research. Finally, we illuminate some aspects of the concept of “best interests.”. (shrink)

Cyberstalking is a significant challenge in the era of Internet and technology. When dealing with cyberstalking, institutions and governments struggle in how to manage it and where to allocate resources. Therefore, it is important to understand how individuals feel about the problem of cyberstalking and how it can be managed. In this paper, we use Nissenbaum’s :119–158, 2004) contextual integrity as a theoretical framework for applying Keeney’s value-focused thinking technique to develop actionable objectives aimed at the prevention of cyberstalking. By (...) systematically interviewing over 100 individuals, we extract 20 objectives based on the underlying norms of distribution and appropriateness relevant to the context of cyberstalking. The objectives ensure that contextual integrity is maintained and cyberstalking prevented. Organizations can benefit from the objectives developed in this research since they are a means for developing an ethical policy regarding cyberstalking. Therefore, they help to ensure an ethical engagement with society at large by organizations when dealing with cyberstalking. Researchers can use these objectives to explore the best means for their implementation by organizations and institutions. Additionally they can explore the network mapping of fundamental and means objectives to determine relationships and their strengths in the cyberstalking context. (shrink)

This article reports on qualitative research conducted in KwaZulu-Natal, South Africa, among researchers and gate-keepers of health facilities in the province. Results suggest disparate but not irreconcilable perceptions of the social value of research in provincial health facilities. This study found that researchers tended to emphasize the contribution of research to the generation of knowledge and to the health of future patients while gate-keepers of health facilities tended to emphasize its contribution to the healthcare system and to current patients. Furthermore, (...) relations between research stakeholders were perceived to be somewhat fragile, making it difficult for stakeholders to achieve consensus about the social value of research, as well as on ways to maximize value. Interventions to negotiate a shared perspective on the social value of research would appear to be warranted, and the findings of this study suggest some focus areas for such intervention. (shrink)

What does it mean that certain properties globally supervene on others? The paper criticises the now standard way of spelling out the notion in terms of 1–1 correlations between world-domains and proposes a modification that escapes the difficulties. The new definition can secure the additional benefit of resisting an argument to the effect that global supervenience is theoretically dispensable.

This work reviews and critically evaluates contemporary American Catholic moral theological reflections, both non-magisterial and magisterial, from 1975 to the present. It also considers relevant reflections from papal and papally related literature, and from the older tradition. It examines the following: criteria used in distinguishing between "ordinary" and "extraordinary" means, e.g., benefit and burden; miscellaneous elements employed in regard to these means, e.g., treatment and care; definitions given for these means. Based on the results of the foregoing, it proposes (...) original working definitions of these two main types of means. ;This work confirms the need, already recognized by some moral theologians, for a broad foundational criterion on which to base contemporary definitions of and distinctions between "ordinary" and "extraordinary" means. It finds the criteria offered thus far to be suggestive but flawed. Accordingly, its own working definitions are grounded in a foundational criterion of "integral human fulfillment in Jesus," a concept taken from the fundamental moral theological system developed by Germain Grisez. (shrink)

In this paper, first the term 'prioritarianism' is defined, with some mathematical precision, on the basis of intuitive conceptions of prioritarianism, especially the idea that "benefiting people matters more the worse off these people are". (The prioritarian weighting function is monotonously ascending and concave, while its first derivation is smoothly descending and convex but positive throughout.) Furthermore, (moderate welfare) egalitarianism is characterized. In particular a new symmetry condition is defended, i.e. that egalitarianism evaluates upper and lower deviations from the (...) social middle symmetrically and equally negatively (as do e.g. variance and Gini). Finally, it is shown that this feature distinguishes egalitarianism also extensionally from prioritarianism. (shrink)

The American Journal of Bioethics, Volume 11, Issue 7, Page 1-2, July 2011.

In (Re)Defining Racism, Alberto Urquidez argues that conflicting philosophical accounts over the definition of racism are at bottom linguistic confusions that would benefit from a Wittgensteinian-inspired approach. In this essay, I argue that such an approach would be helpful in disputes over the definition of metaphysically contested concepts, such as “race,” or semantically contested concepts, such as “racialization.” I disagree, however, that such insights would prove helpful or do very little for disputes concerning normatively contested concepts, such as “racism.”.

While pharmaceutical industry involvement in producing, interpreting, and regulating medical knowledge and practice is widely accepted and believed to promote medical innovation, industry-favouring biases may result in prioritizing corporate profit above public health. Using diabetes as our example, we review successive changes over forty years in screening, diagnosis, and treatment guidelines for type 2 diabetes and prediabetes, which have dramatically expanded the population prescribed diabetes drugs, generating a billion-dollar market. We argue that these guideline recommendations have emerged under pervasive industry (...) influence and persisted, despite weak evidence for their health benefits and indications of serious adverse effects associated with many of the drugs they recommend. We consider pharmaceutical industry conflicts of interest in some of the research and publications supporting these revisions, and in related standard-setting committees and oversight panels. We raise concern over the long-term impact of these multifaceted involvements. Rather than accept industry conflicts of interest as normal, needing only to be monitored and managed, we suggest challenging that normalcy, and ask: what are the real costs of tolerating such industry participation? We urge the development of a broader focus to fully understand and curtail the systemic nature of industry’s influence over medical knowledge and practice. (shrink)

Benefit sharing has been a recurrent theme in international debates for the past two decades. However, despite its prominence in law, medical ethics and political philosophy, the concept has never been satisfactorily defined. In this conceptual paper, a definition that combines current legal guidelines with input from ethics debates is developed. Philosophers like boxes; protective casings into which they can put concisely-defined concepts. Autonomy is the human capacity for self-determination; beneficence denotes the virtue of good deeds, coercion (...) is the intentional threat of harm and so on. What about benefit sharing? Does the concept have a box and are the contents clearly defined? The answer to this question has to be no. The concept of benefit sharing is almost unique in that various disciplines use it regularly without precise definitions. In this article, a definition for benefit sharing is provided, to eliminate unnecessary ambiguity. (shrink)

Specifically tailored industrial control systems attacks are becoming increasingly sophisticated, accentuating the need of ICS cyber security. The nature of these systems makes traditional IT security measures not suitable, requiring expressly developed security countermeasures. Within the past decades, research has been focused in network-based intrusion detection systems. With the appearance of software-defined networks, new opportunities and challenges have shown up in the research community. This paper describes the potential benefits of using SDNs in industrial networks with security purposes and (...) presents the set up and results of a pilot experiment carried out in a scaled physical implementation. The experimental set up consists in the detection of ICMP flood and packet payload alteration based on signature comparison. Results point to the potential viability of the technology for intrusion detection and the need of researching in architectural scalability. (shrink)

Collaborative research practices in the field of plant genetic resources must follow the principles of fairness and equity as defined in the Convention on Biological Diversity (CBD) and in the International Treaty on Plant Genetic Resources for Food and Agriculture (ITPGRFA). In this context the concepts of fairness and equity generally refer to the substantive and procedural dimensions associated with sharing the benefits of this research. But neither term is clearly defined by these international treaties, and the meanings (...) attributed to the concepts vary among different societies. This paper looks at the question of how to account for the diversity among value systems when conducting research that implicates diverse stakeholders and respects the requirements of fairness and equity. We incorporated an auto-ethnography method developed as part of a multi-stakeholder network involved in research projects on plant genetic resources in West Africa. A theatrical device was used as a framework for testing the principles of fairness and equity, helping us to collectively identify feelings of injustice, and explore the conditions for making collaborative research practices more ethical in ways that respect the perspectives of different stakeholders. In an environment of extensive political and socio-cognitive inequality, this approach makes it possible to explain the criteria relating to interactional justice and expectations in terms of socio-political and socio-emotional benefits. It also invites us to consider the principles of fairness and equity in a framework of ethical competence that goes beyond international directives. (shrink)

A response to pressures on pension finance caused by population ageing and economic turbulence has been a substantial move from traditional defined-benefit plans in which, at least in principle, all risk falls on the contributions side, to defined-contribution plans in which risk during accumulation all falls on the benefits side. This paper argues that both designs are ‘corner solutions’ and hence generally suboptimal, and goes on to set out a range of designs that offer different ways of (...) sharing risk among workers, employers, future pensioners and current pensioners. (shrink)

The author assures readers that Chris Matthew Sciabarra has met all Aristotelian requirements in full, providing not one but two definitions of “dialectics,” which, as the art of context-keeping, is indeed an essential part of Ayn Rand's philosophical method. He shows how Sciabarra's definitional process compares quite favorably in terms of timeliness, transparency, and benevolence to that of Rand and other Objectivists, and notes that Sciabarra's overriding concern, notwithstanding his obvious great respect for Rand's substantive philosophical achievements, has been to (...) identify and clarify the methods she and other thinkers have used to profound benefit. (shrink)

We describe a software system for the analysis of defined benefit actuarial plans. The system uses a recursive formulation of the actuarial stochastic processes to implement precise and efficient computations of individual and group cash flows.

Discussion of real cases encountered by medical students has been advocated as a component of medical ethics education. Suggested benefits include: a focus on the actual problems that medical students confront; active learner involvement; and facilitation of an exploration of the meaning of their own values in relation to professional behaviour. However, the approach may also carry risks: students may focus too narrowly on particular clinical topics or show a preference for discussing legal problems that may appear to have clearer (...) solutions. Teaching may therefore omit areas generally considered to be important components of the curriculum. In this paper, the authors present an analysis of the moral problems raised by medical students in response to a request to describe ethically problematic cases they had encountered during two clinical attachments, for the purpose of educational discussion at case-based seminars. We discuss the problems raised and compare the content of the cases to the UK Consensus Statement on core content of learning. The authors also describe the approaches that the students used to undertake an initial analysis of the problems raised, and consider possible implications for the development of medical ethics education. (shrink)

While triage protocols share a common goal—maximizing life by selecting patients who would most benefit from critical care—there are many variations in the selection of criterion to respond to situ...

There is an idea, extremely common among social contract theorists, that the primary function of social institutions is to secure some form of cooperative benefit. If individuals simply seek to satisfy their own preferences in a narrowly instrumental fashion, they will find themselves embroiled in collective action problems – interactions with an outcome that is worse for everyone involved than some other possible outcome. Thus they have reason to accept some form of constraint over their conduct, in order to (...) achieve this superior, but out-of-equilibrium outcome. A social institution can be defined as a set of norms that codify these constraints.1 Simplifying somewhat, one can then say that social institutions exist in order to secure gains in Pareto-efficiency. (shrink)

Each year, millions of individuals in the United States are treated for a variety of serious medical conditions with prescription drugs whose therapeutic benefits are well known. The vast majority of these medications are used to treat medical and psychiatric illnesses. Generally, they are used as prescribed, and contribute to a better quality of life for persons suffering from debilitating or life-threatening disorders.The fact that a small portion of these medications is diverted by those who seek their psychoactive effects raises (...) the important policy issue: how to make drugs easily available for medical use while limiting access for purposes of abuse.Such a responsibility poses challenges very different from those of the so-called “war” on illicit drugs, because this control must be achieved without impeding patients’ access to medical care. A rational public policy would attempt to achieve a balance between the need to minimize abuse and the need to provide relief. (shrink)

It is widely held that individuals who are unable to provide informed consent should be enrolled in clinical research only when the risks are low, or the research offers them the prospect of direct benefit. There is now a rich literature on when the risks of clinical research are low enough to enroll individuals who cannot consent. Much less attention has focused on which benefits of research participation count as ‘direct’, and the few existing accounts disagree over how this (...) crucial concept should be defined. This disagreement raises concern over whether those who cannot consent, including children and adults with severe dementia, are being adequately protected. The present paper attempts to address this concern by considering first what additional protections are needed for these vulnerable individuals. This analysis suggests that the extant definitions of direct benefits either provide insufficient protection for research subjects or pose excessive obstacles to appropriate research. This analysis also points to a modified definition of direct benefits with the potential to avoid these two extremes, protecting individuals who cannot consent without blocking appropriate research. (shrink)

Today, thanks to biomedical technologies advances, some persons with fertility issues can conceive. Transgender persons benefit also from these advances and can not only actualize their self-identified sexual identities but also experience parenthood. Based on clinical multidisciplinary seminars that gathered child psychiatrists and psychoanalysts interested in the fields of assisted reproduction technology and gender dysphoria, philosophers interested in bioethics, biologists interested in ART, and endocrinologists interested in pubertal suppression, we explore how new biotechnical advances, whether in gender transition or (...) procreation, could create new ways to conceive a child possible. After reviewing the various medical/surgical techniques for physical gender transition and the current ART options, we discuss how these new ways for persons to self-actualize and to experience parenthood can not only improve the condition of transgender persons but also introduce some elements of change in the habitual patterns of thinking especially in France. Finally, we discuss the ethical issues that accompany the arrival of these children and provide creative solutions to help society handle, accept, and support the advances made in this area. (shrink)

An individual's health, genetic, or environmental-exposure data, placed in an online repository, creates a valuable shared resource that can accelerate biomedical research and even open opportunities for crowd-sourcing discoveries by members of the public. But these data become “immortalized” in ways that may create lasting risk as well as benefit. Once shared on the Internet, the data are difficult or impossible to redact, and identities may be revealed by a process called data linkage, in which online data sets are (...) matched to each other. Reidentification, the process of associating an individual's name with data that were considered deidentified, poses risks such as insurance or employment discrimination, social stigma, and breach of the promises often made in informed-consent documents. At the same time, re-ID poses risks to researchers and indeed to the future of science, should re-ID end up undermining the trust and participation of potential research participants. The ethical challenges of online data sharing are heightened as so-called big data becomes an increasingly important research tool and driver of new research structures. Big data is shifting research to include large numbers of researchers and institutions as well as large numbers of participants providing diverse types of data, so the participants’ consent relationship is no longer with a person or even a research institution. In addition, consent is further transformed because big data analysis often begins with descriptive inquiry and generation of a hypothesis, and the research questions cannot be clearly defined at the outset and may be unforeseeable over the long term. In this article, we consider how expanded data sharing poses new challenges, illustrated by genomics and the transition to new models of consent. We draw on the experiences of participants in an open data platform—the Personal Genome Project—to allow study participants to contribute their voices to inform ethical consent practices and protocol reviews for big-data research. (shrink)

The allocation of any scarce health care resource, especially a lifesaving resource, can create profound ethical and legal challenges. Liver transplant allocation currently is based upon urgency, a sickest-first approach, and does not utilize capacity to benefit. While urgency can be described reasonably well with the MELD system, benefit encompasses multiple dimensions of patients’ well-being. Currently, the balance between both principles is ill-defined. This survey with 502 participants examines how urgency and benefit are weighted by different (...) stakeholders. Liver transplant patients favored the sickest-first allocation, although all other groups tended to favor benefit. Criteria of a successful transplantation were a minimum survival of at least 1 year and recovery of functional status to being ambulatory and capable of all self-care. An individual delisting decision was accepted when the 1-year survival probability would fall below 50%. Benefit was found to be a critical variable that may also trigger the willingness to donate organs. The strong interest of stakeholder for successful liver transplants is inadequately translated into current allocation rules. (shrink)

“Fair and equitable benefit-sharing” is one of the objectives of the UN Convention on Biological Diversity and the FAO International Treaty on Plant Genetic Resources for Food and Agriculture. In essence, benefit-sharing holds that countries, farmers, and indigenous communities that grant access to their plant genetic resources and/or traditional knowledge should share in the benefits that users derive from these resources. But what exactly is understood by “fair” and “equitable” in this context? Neither term is defined in (...) the international treaties. A complicating factor, furthermore, is that different motivations and perspectives exist with respect to the notion of benefit-sharing itself. This paper looks at six different approaches to benefit-sharing that can be extracted from the current debates on “Access and Benefit-Sharing.” These approaches form the basis of a philosophical reflection in which the different connotations of “fair and equitable” are considered, by analyzing the main principles of justice involved. Finally, the various principles are brought together in order to draw some conclusions as to how a fair and equitable benefit-sharing mechanism might best be realized. This results in several recommendations for policymakers. (shrink)

In 1986 David Gauthier proposed an arbitration scheme for two player cardinal bargaining games based on interpersonal comparisons of players’ relative concessions. In Gauthier’s original arbitration scheme, players’ relative concessions are defined in terms of Raiffa-normalized cardinal utility gains, and so it cannot be directly applied to ordinal bargaining problems. In this paper I propose a relative benefit equilibrating bargaining solution for two and n-player ordinal and quasiconvex ordinal bargaining problems with finite sets of feasible basic agreements based (...) on the measure of players’ ordinal relative individual advantage gains. I provide an axiomatic characterization of this bargaining solution and discuss the conceptual relationship between RBEBS and ordinal egalitarian bargaining solution proposed by Conley and Wilkie. I show the relationship between the measurement procedure for ordinal relative individual advantage gains and the measurement procedure for players’ ordinal relative concessions, and argue that the proposed arbitration scheme for ordinal games can be interpreted as an ordinal version of Gauthier’s arbitration scheme. (shrink)

ABSTRACT Most pharmaceutical research carried out today is focused on the treatment and management of the lifestyle diseases of the developed world. Diseases that affect mainly poor people are neglected in research advancements in treatment because they cannot generate large financial returns on research and development costs. Benefit sharing arrangements for the use of indigenous resources and genetic research could only marginally address this gap in research and development in diseases that affect the poor. Benefit sharing as a (...) strategy is conceptually problematic, even if one, as we do, agrees that impoverished indigenous communities should not be exploited and that they should be assisted in improving their living conditions. The accepted concept of intellectual property protection envisages clearly defined originators and owners of knowledge, whereas the concept of community membership is fluid and indigenous knowledge is, by its very nature, open, with the originator(s) lost in the mists of time. The delineation of ‘community’ presents serious conceptual and practical difficulties as few communities form discrete, easily discernable groups, and most have problematic leadership structures. Benefit sharing is no substitute for governments’ responsibility to uplift impoverished communities. Benefit sharing arrangements may be fraught with difficulties but considerations of respect and equity demand that prior informed consent and consultation around commercialisation of knowledge take place with the source community and their government.1. (shrink)

The return of individual research results and incidental findings from biobanking research is a much debated ethical issue globally but has extensive relevance in India where the burden of out of pocket health care expenses is high for the majority. The views of 21 ethics committee (EC) members and 22 researchers from Bengaluru, India, concerning the ethics of biobanking research were sought through in‐depth interviews using an unfolding case vignette with probes. A shared view among most was that individual research (...) results which are ‘actionable’ or have ‘clinical significance’ should be returned to the sample contributors through their treating physicians. This was seen as an ethical obligation and a moral duty on the side of the researcher to “give back” to the person who contributed to the research. The challenges foreseen were that of resources, both financial and personnel, for the time and counseling needed to accompany the disclosure of results. Perceptions of ‘ownership’ appear to influence the concept of benefit sharing. While benefit sharing in financial terms was considered ethically challenging, certain researchers and ethics committee members made a case for “two way altruism” where the researcher in return for the altruistic ‘valuable contribution’, shares with the contributor/ community, benefits of the research which could include research findings, improved patient care, and more affordable access to the new diagnostic tests or products arising from the research. This defines the emerging ethic of “giving back” which goes beyond individual rights and ensures reciprocity and distributive justice. (shrink)

The 2013 Ebola virus outbreak in West Africa, as of writing, is declining in reported human cases and mortalities. The resulting devastation caused highlights how health systems, in particular in West Africa, and in terms of global pandemic planning, are ill prepared to react to zoonotic pathogens. In this paper we propose One Health as a strategy to prevent zoonotic outbreaks as a shared goal: that human and Great Ape vaccine trials could benefit both species. Only recently have two (...) phase 2/3 Ebola human vaccine trials been started in West Africa. This paper argues for a conceptual change in pandemic preparedness. We first discuss the ethics of One Health. Next, we focus on the current Ebola outbreak and defines its victims. Third, we present the notion of a ‘shared benefit’ approach, grounded in One Health, and argue for the vaccination of wild apes in order to protect both apes and humans. We believe that a creation of such inter-species immunity is an exemplar of One Health, and that it is worth pursuing as a coextensive public health approach. (shrink)

Risks and benefit evaluation for controlled human infection studies, where healthy volunteers are deliberately exposed to infectious agents to evaluate vaccine efficacy, should be explicit, systematic, thorough, and non‐arbitrary. Decision analysis promotes these qualities using four steps: (1) determining explicit criteria and measures for evaluation, (2) identifying alternatives to the study, (3) defining the models used to estimate the measures for each alternative, and (4) running the models to produce the estimates and compare the alternatives. In this paper, we (...) describe how decision analysis might be applied by funders and regulators, as well as by others contemplating the use of novel controlled human infection studies for vaccine development and evaluation. (shrink)

Benefit-cost analysis is typically defined as an implementation of the potential Pareto criterion, which requires inclusion of any impact for which individuals have willingness to pay. This definition is incompatible with the exclusion of impacts such as rights and distributional concerns, for which individuals do have WTP. I propose a new definition: BCA should include only impacts for which consumer sovereignty should govern. This is because WTP implicitly preserves consumer sovereignty, and is thus only appropriate for ‘sovereignty-warranting’ impacts. (...) I compare the high cost of including non-sovereignty-warranting impacts to the relatively low cost of excluding sovereignty-warranting impacts. (shrink)

This article focuses on key roles that the ill-defined concept of ‘public benefit’ plays in accessing the public health data held by the UK’s National Health Service. Using the concept of the ‘trade-off fallacy’, this article argues that current data access and governance structures, based on particular construals of public benefit in the context of public health data, largely negate the possibility of effective control by individuals over future uses of personal health data. This generates a health (...) data version of the trade-off fallacy that enables widespread involvement of commercial actors in personal data, despite public concerns over commercial involvement in, and potential exploitation of, public health data. The article suggests that, despite ostensibly robust regulatory and governance structures, this publicly held data is potentially subject to similar logics of accumulation as seen elsewhere in the digital economy, highlighting the inadequacies of current data regulatory frameworks in the digital era. (shrink)