This case is about a study of burn patients that included a request to the IRB for a waiver of consent for perianal specimen collection–a request which ultimately was not approved by a reviewing IR...

Abstract The use of photo research methods is influenced by underlying ontological and epistemological assumptions. Variant assumptions about reality and knowledge converge to conceive a relationship between the knower and what can be known. These assumptions provide the rationale for decided ways of engaging participants in the process of scientific inquiry. In this paper, we examine how perspectives of realism and relativism may shape epistemological understandings and influence type and use of photo methods in qualitative research. Based on deliberations about (...) underlying ontological and epistemological assumptions and related strengths and challenges of photo methods, we assert that photo methods contribute to the development of knowledge that both matters to participants and informs nursing practice. (shrink)

This chapter contains sections titled: Metaphysical Approaches Metaphysical Problems References.

This essay series attempts to stimulate the debate about the moral challenges that internationalisation confronts us with, both in the Netherlands and abroad, and in particular for Artist-in-Residencies (AIRs). The publication is a reflection on how the crisis is reconsidering our international ambitions, starting from a post-COVID society. Internationalisation is an inevitable reality, inherent to the art landscape. The current time calls for a critical reflection on major issues such as climate inequality, plurality and the Western-dominant canon. 0With contributions and (...) critical insights by Jeanne van Heeswijk, Jack Segbars, Erik Hagoort, Pascal Gielen, Cecilia Bengtsson, Merlijn Twaalfhoven, Hicham Khalidi, reinaart vanhoe and Suzanne van der Beek. Thanks to Jan van Eyck Academie, Mondriaan Fonds, Prins Bernhard Cultuurfonds en het Amsterdams Fonds voor de Kunst for their support. (shrink)

The case (Dawson et al. 2024) raises tensions between the ethical demands of respect for patient autonomy, patients’ clinical needs, and research to improve clinical care. Given burn patients’ urge...

Emergency nurses apply specialist knowledge to the practice of emergency care. This paper discusses the ways in which three emergency nurses understand the nature of their care from their own frames of reference and experiences and presents some of the data collected in a larger study. Various discourses, which compete to inform emergency nurses' understandings of practice, are linked with the notion of nurses as subjects; that is, each discourse may inform, shape and constitute the practice of the nurse and, (...) in turn, the ways in which the patient comes to be known and understood. I will examine the ways in which emergency nurses come to experience or position themselves vis‐à‐vis extant forms of knowledge of emergency care and the extent to which they articulate new or distinctive formulations of emergency care. This paper illuminates the commonalities that constitute the discourses of emergency nursing care, and also analyse nurses' language which demonstrates that within each discourse variations, contradictions and resistances exist. Emergency nursing care occurs in a context of a biomedical discourse that dominates, or tends to dominate, the work of the emergency setting and so to determine acceptable or possible practices. Nevertheless, nurses contest in various ways the ‘truths' that they understand to underpin their practice. Challenges to biomedical discourses are revealed, to some extent, by drawing attention to specific situations and particular struggles encountered in emergency nurses' everyday practice. (shrink)

Methodologies of poststructuralist theory and critical social theory may be appropriated for nursing research and practice. Researchers using either methodology employ an analysis of power to explore experiences in various fields, and raise issues diat are highly relevant to nursing. However, the two methodologies differ and, often, die respective dieories are sharply opposed. In diis paper, die differences bodi from widiin and between each approach are explored, showing dieir tensions and limits. I contend that a reflexive approach to discourse analysis (...) provides insight into some of die methodological challenges diat arise in die context of bodi dieories. It is argued diat die differences between poststructuralism and critical social dieory seem likely to be mellowed by encounters diat treat each other with respect. To some extent, such encounters may tend to converge die two positions. (shrink)

There is little information about the content of ethics consultations in pediatrics. We sought to describe the reasons for consultation and ethical principles addressed during EC in pediatrics through retrospective review and directed content analysis of EC records at St. Jude Children's Research Hospital. Patient-based EC were highly complex and often involved evaluation of parental decision making, particularly consideration of the risks and benefits of a proposed medical intervention, and the physician's fiduciary responsibility to the patient. Nonpatient consultations provided guidance (...) in the development of institutional policies that would broadly affect patients and families. This is one of the few existing reviews of the content of pediatric EC and indicates that the distribution of ethical issues and reasons for moral distress are different than with adults. Pediatric EC often facilitates complex decision making among multiple stakeholders, and further prospective research is need.. (shrink)

This paper examines how three Dutch political parties employ the Internet as a tool to enhance ‘digital democracy’. The potential of digital democracy is considered to be strongest in the sphere of collective action outside the domain of political institutions. In this article, however, attention is given to how institutionalized channels might be supportive of digital democracy. Three components of the democratic process – information provision, deliberation, and political decision-making – are examined in the content and user assessments of the (...) web sites of the Socialist Party, the Christian Democratic Party and the Green Party. Minor differences were found in the party web sites regarding information provision; substantial differences were found regarding the degree and nature of political deliberation available on the sites. Indicators of the third component, political decision-making, were least evident on all three web sites. User assessments of the sites and opportunities for political deliberation followed, more or less, the general public images of the related political parties. (shrink)

Despite recent advances in HIV prevention and treatment, high HIV incidence persists among people who inject drugs. Difficult legal and political environments and lack of services for PWID likely contribute to high HIV incidence. Some advocates question whether any HIV prevention research is ethically justified in settings where healthcare system fails to provide basic services to PWID and where implementation of research findings is fraught with political barriers. Ethical challenges in research with PWID include concern about whether research evidence will (...) be translated into practice; concerns that research might exacerbate background risks; and ethical challenges regarding the standard of HIV prevention in research. While these questions arise in other research settings, for research with PWID, these questions are especially controversial. This paper analyses four ethical questions in determining whether research could be ethically acceptable: Can researchers ensure that research does not add to the burden of social harms and poor health experienced by PWID? Should research be conducted in settings where it is uncertain whether research findings will be translated into practice? When best practices in prevention and care are not locally available, what standard of care and prevention is ethically appropriate? Does the conduct of research in settings with oppressive policies constitute complicity? We outline specific criteria to address these four ethical challenges. We also urge researchers to join the call to action for policy change to provide proven safe and effective HIV prevention and harm reduction interventions for PWID around the world. (shrink)

Despite recent advances in HIV prevention and treatment, high HIV incidence persists among people who inject drugs. Difficult legal and political environments and lack of services for PWID likely contribute to high HIV incidence. Some advocates question whether any HIV prevention research is ethically justified in settings where healthcare system fails to provide basic services to PWID and where implementation of research findings is fraught with political barriers. Ethical challenges in research with PWID include concern about whether research evidence will (...) be translated into practice; concerns that research might exacerbate background risks; and ethical challenges regarding the standard of HIV prevention in research. While these questions arise in other research settings, for research with PWID, these questions are especially controversial. This paper analyses four ethical questions in determining whether research could be ethically acceptable: Can researchers ensure that research does not add to the burden of social harms and poor health experienced by PWID? Should research be conducted in settings where it is uncertain whether research findings will be translated into practice? When best practices in prevention and care are not locally available, what standard of care and prevention is ethically appropriate? Does the conduct of research in settings with oppressive policies constitute complicity? We outline specific criteria to address these four ethical challenges. We also urge researchers to join the call to action for policy change to provide proven safe and effective HIV prevention and harm reduction interventions for PWID around the world. (shrink)

Eyal et al have recently argued that researchers should consider conducting severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) human challenge studies to hasten vaccine development. We have conducted (J. L.) and overseen (L. D.) human challenge studies and agree that they can be useful in developing anti-infective agents. We also agree that adults can autonomously choose to undergo risks with no prospect of direct benefit to themselves. However, we disagree that SARS-CoV-2 challenge studies are ethically appropriate at this time, for (...) 3 reasons: (1) current scientific knowledge of SARS-CoV-2 infection is insufficient to manage risks; (2) autonomous decision making, while necessary, does not override concerns about risk; and (3) undertaking challenge studies now would imperil confidence in the research enterprise, potentially undermining the global response to the coronavirus disease 2019 (COVID-19) pandemic. (shrink)

Genomic sequencing is becoming more common both in clinical practice and as a routine aspect of much research. Over the last 15 years there has been ongoing discussion about the implications of gen...

The ‘managed care’ idea: implications for health service systems in Australia The growth of corporatism in health‐care in the US, and the consequences arising from US models of health‐care delivery systems provide an enormously valuable point of comparison with health systems of other developed economies, such as Australia. If lessons are to be learnt from the US, then an analysis of the structure and performance of the US health‐care system provides important background for understanding and assessing contemporary policy changes to (...) administrative and organizational designs and techniques for patient care in Australia. (shrink)

This article studies the conceptions of social justice of women active in transnational migrant politics over a period of roughly 20 years in the Netherlands. The novel focus on migrant women reveals that transnational politics is almost completely male-dominated and -directed. Two of the exceptions found in this article include a leftist and a Kurdish women organization supporting the communist cause in the 1980s and the Kurdish struggle in the 1990s in Turkey, respectively. In both organizations gender equality was subordinated (...) to broader ideologies of political parties in their homeland. Leftist activists in the cold war era supported a narrow definition of the "politics of redistribution," while and Kurdish activists, combined classical features of the latter with those of traditional identity politics. (shrink)

Volume 19, Issue 10, October 2019, Page 97-98.

As medicine and science advance, new ethical questions emerge. Over time, deliberation and analysis result in a somewhat settled approach to a problem. Often the settled approach is based on group...

As part of the regulatory review process, both the Food and Drug Administration and Office for Human Research Protections (U.S. Department of Health and Human Services [HHS]...

Dans les stations de tourisme de montagne, les intersaisons correspondent à des creux d’activité durant lesquels les offres d’emploi alternatives sont peu nombreuses. Les saisonniers se trouvent donc confrontés à une période de chômage cyclique. Cette situation « intermédiaire », réunissant une forme d’incertitude de la relation d’emploi ainsi qu’une relative prévisibilité des périodes de recrutement n’est pas sans susciter certaines controverses. Dans ce contexte, comment sont vécues les phases de chômage saisonnier dans ces territoires? Ces séquences temporelles correspondent-elles à (...) un « temps mort » ou à un temps pluriel? Comment se négocie le temps pour soi dans le cadre d’embauches à contre-rythmes des temps sociaux dominants? Dans le cadre de cette forme d’emploi intermittente, le temps de chômage peut-il être conçu comme un temps de construction de la carrière professionnelle? Cet article s’intéresse aux formes d’adaptation aux rythmes d’emploi et de chômage des saisonniers en montagne et montre comment ces périodes hors-emploi participent de l’intériorisation de rythmicités spécifiques. (shrink)

Narrative has proven itself a continuous as well as adaptable means for environmentally oriented expression. Its role goes beyond the mediation of pre-existing knowledge imported into the realm of storytelling from other domains; rather, influential models of the natural world tend to circulate as storyworlds. This special issue of SubStance proceeds from the premise that narratives are not only a sequence of signs encoding a story but also “invisible, elusive representations that exist only in the mind”. Narrative forms generate and (...) transfer environmental knowledge; moreover, any specifically narrative concerns are important contributing factors to the models of agency, change... (shrink)

Volume 20, Issue 10, October 2020, Page 39-41.

Volume 20, Issue 10, October 2020, Page 82-83.

Volume 20, Issue 4, May 2020, Page 111-113.

ABSTRACT In recent years there has been intense debate regarding the level of medical care provided to ‘standard care’ control groups in clinical trials in developing countries, particularly when the research sponsors come from wealthier countries. The debate revolves around the issue of how to define a standard of medical care in a country in which many people are not receiving the best methods of medical care available in other settings. In this paper, we argue that additional dimensions of the (...) standard of care have been hitherto neglected, namely, the structure and efficiency of the national health system. The health system affects locally available medical care in two important ways: first, the system may be structured to provide different levels of care at different sites with referral mechanisms to direct patients to the appropriate level of care. Second, inefficiencies in this system may influence what care is available in a particular locale. As a result of these two factors locally available care cannot be equated with a national ‘standard’. A reasonable approach is to define the national standard of care as the level of care that ought to be delivered under conditions of appropriate and efficient referral in a national system. This standard is the minimum level of care that ought to be provided to a control group. There may be additional moral arguments for higher levels of care in some circumstances. This health system analysis may be helpful to researchers and ethics committees in designing and reviewing research involving standard care control groups in developing country research. (shrink)

The American Journal of Bioethics, Volume 12, Issue 6, Page 33-34, June 2012.

En este trabajo discuto los criterios que se han postulado para establecer una distinción entre los estados doxásticos y los subdoxásticos; a saber: accesibilidad a la conciencia, integración inferencial y conceptualización. Esta discusión se realiza a través del análisis de los argumentos propuestos por Davies. Mi tesis es que si bien habría una distinción intuitiva entre ciertas clases de estados mentales, estos criterios, según las dos lecturas posibles de lo que el mismo Davies propone para que un criterio constituya una (...) distinción de principio, no parecen establecer la distinción deseada. /// In this paper I discuss the criteria that have been postulated for a principled distinction between doxastic states and subdoxastic states, namely: accesibility to consciousness, inferential integration, and conceptualization. The discussion set off from the analysis of the arguments put forward by Davies. My claim is that although there would be an intuitive distinction among certain kinds of mental states, according to two plausible readings of what Davies himself proposes as a principled criterion, such criteria do not seem to establish it. (shrink)

Volume 19, Issue 11, November 2019, Page 39-41.

This article seeks to advance ethical dialogue on choosing standards of prevention in clinical trials testing improved biomedical prevention methods for HIV. The stakes in this area of research are high, given the continued high rates of infection in many countries and the budget limitations that have constrained efforts to expand treatment for all who are currently HIV-infected. New prevention methods are still needed; at the same time, some existing prevention and treatment interventions have been proven effective but are not (...) yet widely available in the countries where they most urgently needed. The ethical tensions in this field of clinical research are well known and have been the subject of extensive debate. There is no single clinical trial design that can optimize all the ethically important goals and commitments involved in research. Several recent articles have described the current ethical difficulties in designing HIV prevention trials, especially in resource limited settings; however, there is no consensus on how to handle clinical trial design decisions, and existing international ethical guidelines offer conflicting advice. This article acknowledges these deep ethical dilemmas and moves beyond a simple descriptive approach to advance an organized method for considering what clinical trial designs will be ethically acceptable for HIV prevention trials, balancing the relevant criteria and providing justification for specific design decisions. (shrink)

We report on the deliberations of an interdisciplinary group of experts in science, law, and philosophy who convened to discuss novel ethical and policy challenges in stem cell research. In this report we discuss the ethical and policy implications of safety concerns in the transition from basic laboratory research to clinical applications of cell-based therapies derived from stem cells. Although many features of this transition from lab to clinic are common to other therapies, three aspects of stem cell biology pose (...) unique challenges. First, tension regarding the use of human embryos may complicate the scientific development of safe and effective cell lines. Second, because human stem cells were not developed in the laboratory until 1998, few safety questions relating to human applications have been addressed in animal research. Third, preclinical and clinical testing of biologic agents, particularly those as inherently complex as mammalian cells, present formidable challenges, such as the need to develop suitable standardized assays and the difficulty of selecting appropriate patient populations for early phase trials. We recommend that scientists, policy makers, and the public discuss these issues responsibly, and further, that a national advisory committee to oversee human trials of cell therapies be established. **NB we did not reccommend a NAC, we think it might be appropriate**. (shrink)

Informed Consent: What Must Be Disclosed and What Must Be Understood seeks to challenge the “standard view” of consent. It seeks to do so by segregating the “disclosure function” from the “understa...

In crafting our paper on addressing the ethical challenges in HIV prevention research with people who inject drugs,1 we had hoped to stimulate further discussion and deliberation about the topic. We are pleased that three commentaries on our paper have begun this process.2 3 4 The commentaries rightly bring up important issues relating to community engagement and problems in translating research into practice in the fraught environments in which PWID face multiple risks. These risks include acquisition of HIV as well (...) as criminalisation, stigma and lack of access to needed healthcare, prevention and social services. We take this opportunity to respond to the excellent points raised by the commentators. All of the commentaries support our emphasis on robust community engagement with PWID and other stakeholders in designing and conducting HIV prevention research, but urge us to go farther. Wolfe highlights the difficulty of even engaging with community members in oppressive settings, where authorities severely restrict civil liberties of PWID so that even discussing issues related to drug use and enforcement may place individuals at risk. To overcome such limitations, he appropriately suggests interviewing confidentially those who have previously been detained in closed settings as part of the community engagement process. Similarly, Wolfe observes that critical issues can be overlooked with a narrow focus on study procedures if contextual factors before, during or after a study are ignored. For example, he cites the risk of overdose for study participants who have been abstinent during a study and subsequently resume injecting when the study concludes. These kinds of risks may not be obvious …. (shrink)