Consent processes for clinical trials involving HIV prevention research have generated considerable debate globally over the past three decades. HIV cure/eradication research is scientifically more complex and consequently, consent processes for clinical trials in this field are likely to pose a significant challenge. Given that research efforts are now moving toward HIV eradication, stakeholder engagement to inform appropriate ethics oversight of such research is timely. This study sought to establish the perspectives of a wide range of stakeholders in HIV treatment (...) and research to inform consent processes for cure research. In total, 68 South African stakeholders participated in two qualitative research modalities. In-depth interviews were conducted with a purposive sample of 42 individuals - audiotaped with consent. Twenty-six stakeholders participated in three focus group discussions. Thematic analysis of transcribed IDIs and FGDs was conducted. The majority of respondents indicated that there could be unique challenges in HIV cure research requiring special attention. In particular, given the complexity of cure science, translation of concepts into lay language would be critical for potential participants to adequately appreciate risks and benefits in early phase research with experimental interventions. Furthermore, to aid understanding of risks and benefits against a background of desperation for a cure, specially trained facilitators would be required to assist with a psychological assessment prior to consent to avoid curative misconceptions. Long-term participant engagement to assess durability of a cure would mean that the consent process would be prolonged, necessitating annual re-consent. Building trust to maintain such long-term relationships would be critical to retain study participants. Unique consent requirements for cure research in South Africa would include significant efforts to maximise understanding of trial procedures, risks and the need for long-term follow-up. However, the psychological dimension of cure must not be underestimated. Beyond an understanding of cure science, the emotional impact of HIV cure advances the discourse from cure to healing. Consequently, the consent process for cure research would need to be enhanced to include psychological support and counselling. This has several important implications for research ethics review requirements for consent in HIV cure research. (shrink)

Laspro et al. (2024) present an insightful survey of ethical issues emerging in first-in-human whole eye transplants (WET). Their discussion is applicable to a broad range of first-in-human surgica...

New fetal therapies offer important prospects for improving health. However, having to consider both the fetus and the pregnant woman makes the risk–benefit analysis of fetal therapy trials challenging. Regulatory guidance is limited, and proposed ethical frameworks are overly restrictive or permissive. We propose a new ethical framework for fetal therapy research. First, we argue that considering only biomedical benefits fails to capture all relevant interests. Thus, we endorse expanding the considered benefits to include evidence-based psychosocial effects of fetal therapies. (...) Second, we reject the commonly proposed categorical risk and/or benefit thresholds for assessing fetal therapy research. Instead, we propose that the individual risks for the pregnant woman and the fetus should be justified by the benefits for them and the study’s social value. Studies that meet this overall proportionality criterion but have mildly unfavorable risk–benefit ratios for pregnant women and/or fetuses may be acceptable. (shrink)

Here we discuss the challenge posed by self-organization to the Darwinian conception of evolution. As we point out, natural selection can only be the major creative agency in evolution if all or most of the adaptive complexity manifest in living organisms is built up over many generations by the cumulative selection of naturally occurring small, random mutations or variants, i.e., additive, incremental steps over an extended period of time. Biological self-organization—witnessed classically in the folding of a protein, or in the (...) formation of the cell membrane—is a fundamentally different means of generating complexity. We agree that self-organizing systems may be fine-tuned by selection and that self-organization may be therefore considered a complementary mechanism to natural selection as a causal agency in the evolution of life. But we argue that if self-organization proves to be a common mechanism for the generation of adaptive order from the molecular to the organismic level, then this will greatly undermine the Darwinian claim that natural selection is the major creative agency in evolution. We also point out that although complex self-organizing systems are easy to create in the electronic realm of cellular automata, to date translating in silico simulations into real material structures that self-organize into complex forms from local interactions between their constituents has not proved easy. This suggests that self-organizing systems analogous to those utilized by biological systems are at least rare and may indeed represent, as pre-Darwinists believed, a unique ascending hierarchy of natural forms. Such a unique adaptive hierarchy would pose another major challenge to the current Darwinian view of evolution, as it would mean the basic forms of life are necessary features of the order of nature and that the major pathways of evolution are determined by physical law, or more specifically by the self-organizing properties of biomatter, rather than natural selection. (shrink)

Background The broad topic of research ethics is one which has been relatively well-investigated and discussed. Unique ethical issues have been identified for such populations as pediatrics, where the issues of consent and assent have received much attention, and obstetrics, with concerns such as the potential for research to cause harm to the fetus. However, little has been written about ethical concerns which are relatively unique to the population of patients seen by the practitioner of rehabilitation medicine. Discussion (...) This paper reviews unique ethical concerns in conducting research in this population, including decision-making capacity, communication, the potential for subject overuse, the timing of recruitment, hope for a cure and therapeutic misconception and the nature of the health care provider-research subject relationship. Summary Researchers in the area of rehabilitation medicine should be aware of some of the unique ethical challenges posed by this patient population and should take steps to address any potential concerns in order to optimize subject safety and ensure that studies meet current ethical guidelines and standards. (shrink)

Three ethical conflicts in particular are paradigmatic of what we define as “clerkship ethics.” First, a distinction that differentiates the clerkship student from the practicing physician involves the student’s principal role as a learner. The clerkship student must skillfully balance her commitment to her own education against her commitment to patient care in a fashion that may compromise patient care. While the practicing physician can often resolve the tension between these two goods when they come into conflict, the clerkship student (...) is left with a more ambiguous set of choices. Second, evaluative scrutiny during clinical clerkships often forces medical students to balance doing what is morally fitting against the perceived expectations of the medical teams in which they work. Third and finally, a deeply entrenched culture of medical hierarchy presents a particular challenge to innovation and improvement in ethics education during the clerkship years. Students regard faculty as exemplars, but are not provided with the tools to assess when technical medical competence is not matched by moral competence; moreover, these faculty are unlikely to have experienced the ethics education in which students are asked to demonstrate mastery. (shrink)

In “Brain Data in Context: Are New Rights the Way to Mental and Brain Privacy?” Daniel Susser and Laura Cabrera (2024) make a compelling case as to why the greater availability of neural data itsel...

In 2018, the remarkable rescue of twelve young boys and their football coach trapped in a flooded cave in Thailand captured worldwide attention. The rescue required the boys to be dived out of the cave system while fully anaesthetized which presented unique practical and ethical challenges for the rescue team. Major departures from normal anaesthetic practice were required. Taking anaesthetized children underwater was unprecedented, complex, and dangerous. To do this underground in a flooded cave meant the risks were (...) extreme. Using a principlist approach, this essay will outline the rescue plan highlighting the ethical dilemmas faced by the rescue team. Informed consent and full disclosure of information are justifiably waived in emergency disaster scenarios. Beneficence as a guiding principle becomes a major challenge when all rescue options appear destined to cause likely fatalities of healthy young boys. Importantly, virtues and virtue ethics also have a vital role to play when confronting and dealing with ethical challenges in disaster scenarios—this will be discussed with particular reference to the cave rescue. (shrink)

In recent years, permissivism—the claim that a body of evidence can rationalize more than one response—has enjoyed somewhat of a revival. But it is once again being threatened, this time by a host of new and interesting arguments that, at their core, are challenging the permissivist to explain why rationality matters. A version of the challenge that I am especially interested in is this: if permissivism is true, why should we expect the rational credences to be more accurate than the (...) irrational ones? My aim is to turn this challenge on its head and argue that, actually, those who deny permissivism will have a harder time responding to such a challenge than those who accept it. (shrink)

In recent years, dozens of human rights non-governmental organizations (NGOs) across the globe have begun to advocate for economic and social rights, which represents a significant expansion of the human rights movement. This article investigates a central strategy that NGOs have pursued to realize these rights: legalization. Legalization involves specifying rights as valid legal rules and enforcing them through judicial or quasi-judicial processes. After documenting some of the progress made toward legalization, the article analyzes five unique challenges involved (...) in legalizing economic and social rights. It is important to identify these challenges because they must be overcome if the human rights movement wishes to refute the notion that economic and social rights are inherently non-justiciable (and therefore, to some, invalid as rights). These challenges also point to the possibility that legalization is not the only, or even the best, strategic pathway to realize economic and social rights effectively. (shrink)

Genetic research into ageing, longevity and late-onset disease is becoming increasingly common. Yet, there is a paucity of knowledge related to clinical actionability and the return of pathogenic variants to otherwise healthy elderly individuals. Whether or not genetic research in the elderly should be managed differently from standard practices adapted for younger populations has not yet been defined. In this article, we provide an overview of ethical and practical challenges in preparing for a genetic study of over 14 000 (...) healthy Australians aged 70 years or older enrolled in the ASPirin in Reducing Events in the Elderly Healthy Ageing Biobank. At the time of consent, all participants in this study were free of life-threatening illness, cardiovascular disease or cognitive impairment. ASPREE is thus a cohort of healthy elderly individuals with seemingly minimal burden of genetic disease recruited without ascertainment bias. The cohort presents a unique opportunity to address the penetrance of known pathogenic variants in a population without disease symptoms; however, it also raises a number of ethical concerns regarding the interpretation and disclosure of variants with known clinical actionability. Some of the challenges include how to manage the interpretation, disclosure and actioning of pathogenic variants found in otherwise healthy elderly adults without disease symptoms, whether or not to disclose findings for the benefit of family members rather than elderly consented donors themselves, how to manage the return of genetic findings to the elderly individuals who are now in severe cognitive decline or terminal illness, how to ensure quality of information and clinical service upon disclosure of results to this demographic and how to prepare for the insurance implications of disclosing genetic information under Australian law. We discuss these and other dilemmas and propose a defensible plan of management. Trial registration number ISRCTN83772183. (shrink)

Fetal alcohol spectrum disorder is a multifaceted disability, characterized not only by brain- and body-based challenges, but also high rates of environmental adversity, lifelong difficulties with daily living, and distinct sociocultural considerations. FASD is one of the most common neurodevelopmental disabilities in the Western world and associated with significant social and economic costs. It is important to understand the complexities of FASD and the ways in which FASD requires unique consideration in research, practice, and policy. In this article, (...) we discuss our perspectives on factors that distinguish FASD from other disabilities in terms of complexity, co-occurrence, and magnitude. We provide an overview of select literature related to FASD as a socially rooted disability with intergenerational impacts and multiple layers of stigma. These social issues are intertwined with notable experiences of adversity across the lifespan and high rates of co-occurring health concerns for individuals with FASD, all of which present unique challenges for individuals, caregivers, families, service providers, and policy makers. Understanding these factors is the first step in developing and implementing specialized initiatives in support of positive outcomes for individuals with FASD and their families. Future directions are proposed for advancing research, practice, and policy, and responding to the unique complexities of FASD. (shrink)

Two theses figure centrally in work on the epistemology of disagreement: Equal Weight (‘EW’) and Uniqueness (‘U’). According to EW, you should give precisely as much weight to the attitude of a disagreeing epistemic peer as you give to your own attitude. U has it that, for any given proposition and total body of evidence, some doxastic attitude is the one the evidence makes rational (justifies) toward that proposition. Although EW has received considerable discussion, the case for U has not (...) been critically evaluated. Endorsing U, we argue, commits one to the highly controversial thesis that whatever fixes your rational attitudes can do so only by fixing what evidence you have. This commitment imposes a relatively demanding requirement on justified belief in U, one that we argue is not satisfied by what is currently the strongest available case for U, due to Roger White [2005]. Our challenge to U makes more trouble for its proponents than do the worries about U expressed by Gideon Rosen [2001] and Thomas Kelly [2010]. Moreover, if Kelly [2010] is correct in thinking that EW “carries with it a commitment to” U—a claim which we accept for reasons similar to Kelly’s but is beyond this paper’s scope (but see Ballantyne and Coffman [forthcoming])—then our challenge to U bears importantly on EW: to the extent that our challenge to U succeeds, EW also suffers. (shrink)

This study argues the thesis that a set of guidelines ‐ firmly rooted in a particular interpretation of African moral theory, specifically, Ubuntu – will do a better job than current medical ethics frameworks, in addressing ethical challenges around misattributed parentage within the clinical context. Incidental information such as information with significant personal/health implications raises unique challenges for medical professionals. For example, withholding information of misattributed paternity accidentally discovered in clinical interactions may be seen by a patient (...) as a violation of his/her right‐to‐know. Contrarily, disclosure where a patient has not requested information – or where establishing paternity is not the purpose of clinical visit/interaction – may be taken by the patient as a violation of his/her right ‘not‐to‐know’. Resolving these challenges remain a herculean task. African moral theory contains an under‐emphasized value for addressing such ethical challenges around misattributed parentage in the field of transplant. I seek to contribute this knowledge; and enhance clinician‐patient relationship. This study builds off three completed systematic reviews, which aimed to answer the following questions: “what are the ethical challenges regarding information health professionals face within the clinical contest?” and “what core aspects (or common themes) of Ubuntu can be identified in existing literature describing the same?” In this present study, I applied the definition of Ubuntu which captures the core aspects of the theory in ethical literature on the same, to address ethical issues around unsought information of misattributed parentage in the field of transplant. (shrink)

Most people would agree that adoption is a good thing for children in need of a family. Yet adoption is often considered a second best or even last resort for parents in making their families. Against this assumption, I explore the unique value of adoption for prospective parents. I begin with a criticism of the selective focus on the value of adoption for only those people using assisted reproductive technologies. I focus on the value of adoption for all prospective (...) parents, reflecting on non-relative, non-procreative adoptions. First, adoption can meet the important need that a child has for a family, whereas procreation creates rather than meets needs. Second, adoption provides a morally noble opportunity to extend to a stranger benefits usually withheld for one's genetic kin. As such, adoption offers a unique possibility in which impartial concern for an other can be the starting point for a lifetime of love and care. Finally, adoptions can have transformative power over adoptive parents’ conception of family and self. In highlighting the unique value of adoption, I aim to challenge the widespread assumption that adoption has second best status to procreation. Indeed adoption can exemplify the human potential for moral compassion and impartial concern for the needs of others. (shrink)

This paper explores the often-overlooked role of teaching assistants (TAs) in engineering ethics courses, and a particular challenge that TAs face in these roles. TAs not only undertake tasks like instructors, which include teaching, guiding, and evaluating courses, but they also assume the roles of “intermediaries between instructors and students” and “learners becoming teachers.” These distinct roles present TAs with unique challenges, one of which we call the neutrality problem. This problem pertains to whether TAs can and should (...) maintain a neutral stance in the classroom, particularly when students articulate ideas that deviate from the values promoted in the course or held by the TAs. Using a real-life teaching experience as illustrative, we claim that it is challenging and, at times, undesirable for TAs to achieve pedagogical neutrality, primarily due to their pre-existing understanding of ethics and the actual situation of the students. Nevertheless, we posit that TAs should strive to foster an environment where students are encouraged to improve their ethical awareness. Through the underrepresented lens of TAs, we aim to initiate a multi-faceted dialogue on the teaching philosophy and goal of engineering ethics. (shrink)

The contemporary historical situation suggests fascinating parallels with that period of the 13th/7th century when the massive destruction of the Mongol invasions opened the way for popular new forms of Islamic life and practice that eventually spread Islam throughout Asia. Today, as in earlier periods of dramatic upheaval, we can witness those processes of inspiration and awakening that give rise to the spiritual pathways of future centuries, through each soul’s gradual discovery of its unique challenges and demands of (...) ihsan. One way of describing this transformation, to use the Qur’anic language adapted by Ibn ‘Arabi, is in the terms of the process of spiritual realization by which people discover their guiding inner relationship to those divine qualities or “Names” that eventually come to define the meaning and purpose of their lives. Through our life long movement of service to the “Lord” constituted by each divine Name, the transformation of the soul follows a familiar, naturally ascending trajectory. It begins with a curiosity drawing us toward some particular dimension of the Real ; then a compelling striving leading to heightened discipline and awareness; and ultimately to the creative manifestation of that devotion through the appropriate means of teaching, communication, and new communities of fellow- seekers—the Qur’anic “servants of the All-Merciful”—that slowly emerge from this shared spiritual work of devotion, discovery and creative response. Here we point to some ways this process of civilizational renewal is unfolding around the world, focusing on three of the most far-reaching of those divine Names: the “servants of the All-Wise”, in their exploring and deciphering the infinite Signs of God’s Wisdom “on the horizons”, in all of the sciences of nature and society; to those muhsinūn and “servants of the Beautiful” whose creative acts of beauty help awaken that love and awe which mark the beginnings of each spiritual journey; or to those “servants of the Subtly-Gracious” whose lives are dedicated to deepening our understanding of the presence and meaning of each of the divine Signs “in our souls,” in the emerging science of spirituality. These “servants of the all- Merciful” and their communities are themselves the first seeds of an emerging global civilization. (shrink)

Philosophy, I know, is philosophia perennis . A “dated” philosophy, therefore, would appear almost to amount to a contradiction in terms. In this sense the “challenge” implied by the title of this paper seems out of place. A challenge to philosophers—well, perhaps. But a challenge to philosophers in the atomic age —no! In general such an objection is well taken. But we are, of course, never confronted with a situation “in general,” but always with a very specific—and to-day, moreover, with (...) a unique —situation. It is a situation which has changed radically even since the close of official hostilities at the so-called end of World War II. True enough, the history of the two world-wars had already brought home to us the fact that, with the accelerating development of applied science and technology, wars were rapidly approaching a tremendous scale of destructive power. Thus it became difficult to imagine any possibilities of still more powerful implements of devastation. (shrink)

With its wealth of readily and often publicly available information about Web users’ lives, the Web has created new opportunities for conducting online research. Although digital data are easily accessible, ethical guidelines are inconsistent about how researchers should use them. Some academics claim that traditional ethical principles are sufficient and applicable to online research. However, the Web poses new challenges that compel researchers to reconsider concerns of consent, privacy and anonymity. Based on doctoral research into the investigation of online (...) medicine purchasing, this article presents a case study involving online forums, and reviews the existing ethical guidance surrounding the Web. The suggestion is that new ethical guidelines, particularly in relation to informed consent and participants’ own perceptions of what is public or private, are needed owing to the unique challenges of online research. (shrink)

Linkage of population-based administrative data is a valuable tool for combining detailed individual-level information from different sources for research. While not a substitute for classical studies based on primary data collection, analyses of linked administrative data can answer questions that require large sample sizes or detailed data on hard-to-reach populations, and generate evidence with a high level of external validity and applicability for policy making. There are unique challenges in the appropriate research use of linked administrative data, for (...) example with respect to bias from linkage errors where records cannot be linked or are linked together incorrectly. For confidentiality and other reasons, the separation of data linkage processes and analysis of linked data is generally regarded as best practice. However, the ‘black box’ of data linkage can make it difficult for researchers to judge the reliability of the resulting linked data for their required purposes. This article aims to provide an overview of challenges in linking administrative data for research. We aim to increase understanding of the implications of the data linkage environment and privacy preservation; the linkage process itself and linkage quality and potential bias in linked data. We draw on examples from a number of countries to illustrate a range of approaches for data linkage in different contexts. (shrink)

Background: Clinical investigation is a growing field employing increasing numbers of nurses. This has created a new specialty practice defined by aspects unique to nursing in a clinical research context: the objectives (to implement research protocols and advance science), setting (research facilities), and nature of the nurse–participant relationship. The clinical research nurse role may give rise to feelings of ethical conflict between aspects of protocol implementation and the duty of patient advocacy, a primary nursing responsibility. Little is known about (...) whether research nurses experience unique ethical challenges distinct from those experienced by nurses in traditional patient-care settings. Research objectives: The purpose of the study was to describe the nature of ethical challenges experienced by clinical research nurses within the context of their practice. Research design: The study utilized a qualitative descriptive design with individual interviews. Participants and research context: Participating nurses (N = 12) self-identified as having experienced ethical challenges during screening. The majority were Caucasian (90%), female (83%), and worked in outpatient settings (67%). Approximately 50% had > 10 years of research experience. Ethical considerations: The human subjects review board approved the study. Written informed consent was obtained. Findings: Predominant themes were revealed: (1) the inability to provide a probable good, or/do no harm, and (2) dual obligations (identity as a nurse vs a research nurse). The following patterns and subthemes emerged: conflicted allegiances between protocol implementation, needs of the participant, desire to advance science, and tension between the nurse–patient therapeutic relationship versus the research relationship. Discussion: Participants described ethical challenges specific to the research role. The issues are central to the nurse–participant relationship, patient advocacy, the nurse’s role in implementing protocols, and/or advancing science. Conclusion: Ethical challenges related to the specialized role of clinical research nurses were identified. More research is warranted to fully understand their nature and frequency and to identify support systems for resolution. (shrink)

This paper challenges two main arguments often presented to show that cloning a human being would be morally wrong per se. These arguments are that human cloning would be intrinsically wrong 1) because it involves manufacturing a person rather than creating or reproducing one, and 2) because it violates some claim or right that individuals have to be biologically unique. I argue that while cloning may involve genetic selection, it need not always be a decision to select for (...) a certain type of individual. Furthermore, I contend that the notion of biological uniqueness is inadequate to ground either the idea that biologically non‐unique individuals are morally worse off than unique ones or that biological uniqueness itself constitutes a criterion of moral value or status. (shrink)

This article investigates the challenges posed by the reliability of knowledge in neurophenomenology and its connection to reality. Neurophenomenological research seeks to understand the intricate relationship between human consciousness, cognition, and the underlying neural processes. However, the subjective nature of conscious experiences presents unique epistemic challenges in determining the reliability of the knowledge generated in this research. Personal factors such as beliefs, emotions, and cultural backgrounds influence subjective experiences, which vary from individual to individual. On the other (...) hand, scientific knowledge aims to uncover universal truths based on empirical observations and objective principles. Reconciling the subjective and objective realms presents a significant challenge in determining the reliability of knowledge generated through neurophenomenological research. This article aims to examine the inherent limitations and challenges of neurophenomenological research to shed light on the complexities involved in understanding the nature of knowledge itself. This article highlights that the ontological implications of the reliability of knowledge in neurophenomenology arise from the question of how subjective experiences relate to objective reality. Understanding the neural correlates and mechanisms behind subjective experiences can provide insight into the underlying ontological nature of consciousness. (shrink)

Does the establishment of a permanent InternationalWar Crimes Tribunal (International Criminal Court - ICC) constitute a challenge to national sovereignty? According to previous US governments and several American observers, the answer is yes. Establishing a world court that acts independently of the states that gave birth to it renders the idea of sovereignty meaningless. This article analyzes the American objections to the ICC and the conception of sovereignty and international law underlying these objections. It first considers the structure and intent (...) behind the criminal court and attempts to unveil the logic hiding behind the idea of ‘America’s historical uniqueness.’ It touches on the diverging US and European conceptions of sovereignty and ends up arguing that governments that stick to traditional conceptions of sovereignty and international law in the employment of their foreign policy may lose the moral legitimacy that has proven increasingly important for winning the sympathy of allies and regaining world leadership. Keywords: The ICC; US opposition to the court; sovereignty; international law; exceptionalism (Published: 19 May 2009) Citation: Ethics & Global Politics, Vol. 2, No. 2, 2009, pp. 83-108. DOI: 10.3402/egp.v2i2.1973. (shrink)

Background In the course of the COVID-19 pandemic, the biomedical research community’s attempt to focus the attention on fighting COVID-19, led to several challenges within the field of research ethics. However, we know little about the practical relevance of these challenges for Research Ethics Committees. Methods We conducted a qualitative survey across all 52 German RECs on the challenges and potential solutions with reviewing proposals for COVID-19 studies. We de-identified the answers and applied thematic text analysis for (...) the extraction and synthesis of challenges and potential solutions that we grouped under established principles for clinical research ethics. Results We received an overall response rate of 42%. The 22 responding RECs reported that they had assessed a total of 441 study proposals on COVID-19 until 21 April 2020. For the review of these proposals the RECs indicated a broad spectrum of challenges regarding social value, scientific validity, favourable risk–benefit ratio, informed consent, independent review, fair selection of trial participants, and respect for study participants. Mentioned solutions ranged from improved local/national coordination, over guidance on modified consent procedures, to priority setting across clinical studies. Conclusions RECs are facing a broad spectrum of pressing challenges in reviewing COVID-19 studies. Some challenges for consent procedures are well known from research in intensive care settings but are further aggravated by infection measures. Other challenges such as reviewing several clinical studies at the same time that potentially compete for the recruitment of in-house COVID-19 patients are unique to the current situation. For some of the challenges the proposed solutions in our survey could relatively easy be translated into practice. Others need further conceptual and empirical research. Our findings together with the increasing body of literature on COVID-19 research ethics, and further stakeholder engagement should inform the development of hands-on guidance for researchers, funders, RECs, and further oversight bodies. (shrink)

The transplantation of non-human organs into humans, or xenotransplantation (XTx), has recently garnered new attention and is being developed to help address the problem of organ scarcity in transplantation. Ethical issues surrounding XTx have been studied since initial interest arose decades ago and have experienced renewed discussion in the literature. However, the distinct and relevant differences when applied to children has largely been overlooked with few groups attending to the concerns that XTx in children raises. In this paper, we explore (...) ethical challenges to be expected in paediatric XTx, in particular exploring organ sizing concerns, infectious risks, psychological burdens, and issues of moral hazard. We review these domains with the aim of highlighting the implications of pursuing paediatric XTx and the cross-disciplinary approach needed to solve these issues. Children require a unique analysis from a bioethical perspective to best prepare for the issues XTx presents. (shrink)

ABSTRACT The current study is a qualitative investigation aimed at exploring the lived experiences of Tibetan youth who had escaped to India as unaccompanied minors and since then have been living as refugees in India without their parents. The study attempts to explore the challenges, struggles and coping of this unique population of youth refugees growing up in exile in India without the support of parents. Ten Tibetan refugee youth now studying at university level were interviewed in depth. (...) Interpretative phenomenological analysis was used to analyse their narratives. Major findings included the unique sociocultural, political and emotional challenges they faced related to acclimatisation, status of their own political identity, difficulties pertaining to retaining their Tibetan culture in a host country, and loneliness. Their adaptation in the host country was perceived to be facilitated by their unique Buddhist spiritual and cultural beliefs, strong faith in the Dalai Lama, community bonding and peer support and the use of social media to communicate with family in Tibet. The Tibetan refugee youth derived a sense of growth from their adversities related to appreciating the value of family, personal growth in the form of self-reliance, and finding meaning in life by feeling part of a larger purpose related to the Tibetan cause. Implications for practice: The study highlights the unique psychosocial issues of Tibetan refugee youth in exile in India. Culturally sensitive psychosocial support and an understanding of traditional spiritual and religious coping mechanisms may be integrated into health services for the Tibetan refugees who lack family support and may not be familiar with the Western constructs of mental health. (shrink)

BackgroundImplementation science research, especially when using participatory and co-design approaches, raises unique challenges for research ethics committees. Such challenges may be poorly addressed by approval and governance mechanisms that were developed for more traditional research approaches such as randomised controlled trials.DiscussionImplementation science commonly involves the partnership of researchers and stakeholders, attempting to understand and encourage uptake of completed or piloted research. A co-creation approach involves collaboration between researchers and end users from the onset, in question framing, research (...) design and delivery, and influencing strategy, with implementation and broader dissemination strategies part of its design from gestation. A defining feature of co-creation is its emergent and adaptive nature, making detailed pre-specification of interventions and outcome measures impossible. This methodology sits oddly with ethics committee protocols that require precise pre-definition of interventions, mode of delivery, outcome measurements, and the role of study participants. But the strict requirements of ethics committees were developed for a purpose – to protect participants from harm and help ensure the rigour and transparency of studies. We propose some guiding principles to help square this circle. First, ethics committees should acknowledge and celebrate the diversity of research approaches, both formally and informally ; without active support, their members may not understand or value participatory designs. Second, ground rules should be established for co-design applications and communicated to committee members and stakeholders. Third, the benefits of power-sharing should be recognised and credit given to measures likely to support this important goal, especially in research with vulnerable communities. Co-design is considered best practice, for example, in research involving indigenous peoples in New Zealand, Australia and Canada. (shrink)

Pascal Engel (2008) has insisted that a number of notable strategies for rejecting the knowledge norm of assertion are put forward on the basis of the wrong kinds of reasons. A central aim of this paper will be to establish the contrast point: I argue that one very familiar strategy for defending the knowledge norm of assertion—viz., that it is claimed to do better in various respects than its competitors (e.g. the justification and the truth norms)— relies on a presupposition (...) that is shown to be ultimately under motivated. That presupposition is the uniqueness thesis—that there is a unique epistemic rule for assertion, and that such a rule will govern assertions uniformly. In particular, the strategy I shall take here will be to challenge the sufficiency leg of the knowledge norm in a way that at the same time counts against Williamson’s (2000) own rationale for the uniqueness thesis. However, rather than to challenge the sufficiency leg of the knowledge norm via the familiar style of ‘expert opinion’ and, more generally, ‘second-hand knowledge’ cases (e.g. Lackey (2008)), a strategy that has recently been called into question by Benton (2014), I’ll instead advance a very different line of argument against the sufficiency thesis, one which turns on a phenomenon I call epistemic hypocrisy. (shrink)

The media attention and subsequent scientific backlash engendered by the claim, announced by spokespeople for the Encyclopedia of DNA Elements project, that 80% of the human genome has a “biochemical function” highlights the need for a clearer understanding of function concepts in biology. This article provides an overview of two major function concepts that have been developed in the philosophy of science – the “causal role” concept and the “selected effects” concept – and their relevance to ENCODE. Unlike some previous (...) critiques, the ENCODE project is not considered problematic because it employed a causal role definition of function, but because of how this concept was misused. In addition, several unique challenges that arise when dealing with transposable elements, but which were ignored by ENCODE, are highlighted. These include issues surrounding TE-level versus organism-level selection, the origins versus the persistence of elements, and accidental versus functional organism-level benefits. Finally, some key questions are presented that should be addressed in any studies aiming to ascribe functions to major portions of large eukaryotic genomes, the majority of which is made up of transposable elements. (shrink)

It is widely agreed that hypocrisy can undermine one’s moral standing to blame. According to the Nonhypocrisy Condition on standing, R has the standing to blame some other agent S for a violation of some norm N only if R is not hypocritical with respect to blame for violations of N. Yet this condition is seldom argued for. Macalester Bell points out that the fact that hypocrisy is a moral fault does not yet explain why hypocritical blame is standingless blame. (...) She raises a challenge: one must explain what is distinct about hypocritical blame such that the hypocritical blamer lacks the standing to blame, even if the arrogant or petty blamer does not. Of those writing on hypocrisy, only we offer a direct response to Bell’s challenge. Recently, however, our account has come under criticism. We argue here that (1) our account can handle these criticisms and that (2) no other rival account adequately addresses Bell’s challenge of explaining what is uniquely objectionable about hypocritical blame. Because answering Bell’s challenge is a necessary component of any plausible account of the relationship between hypocrisy and standing, our account remains the best on offer. (shrink)

Mr. Wellman’s highly original contribution to the relatively new field of justification in ethics consists of characterizing the different ways in which ethical statements can be challenged and showing how each sort of challenge can be met by an appropriate response, enabling reasonable men to appropriately discuss or reflect on ethical issues. In developing his unique, systematic, methodology of ethics, Mr. Wellman has, first, rigorously reviewed and refuted the main arguments for the view of the nature of all reasoning (...) as deductive and, second, convincingly presented arguments for the existence of nondeductive evidences in ethics. Mr. Wellman’s broad definition of reasoning and his rejection of the identification of justification with reasoning reveals new dimensions of justification which will have wide implications in other areas of human speculation. (shrink)

This article parallels a debate similar to the one in Canada and elsewhere where researchers whose work involves humans now operate under a single ethics policy, with a strong biomedical emphasis. The institution of research ethics committees for humanities and social sciences in South Africa are relatively recent, posing unique challenges to researchers and academicians. These factors contribute to the complexity of conducting ethically sound research in the humanities and social sciences. The article explores this specific context and (...) how a research ethics committee in the humanities and social sciences can meet the challenge of the unique South African context. (shrink)

The paper addresses the epistemological and theoretical assumptions that underpin the concept of Work and Organizational Psychology as idiographic, situated, and transformative social science. Positioning the connection between uniqueness and generalization inside the debate around organization studies as applied approaches, the contribution highlights the ontological, gnoseological, and methodological implications at stake. The use of practical instead of scientific rationality is explored, through the perspective of a hermeneutic lens, underlining the main features connected to the adoption of an epistemology of practice. (...) Specifically, the contribution depicts the configuration of the applied research as a relational practice, embedded in the unfolding process of generating knowledge dealing with concrete social contexts and particular social objects. The discussion of a case study regarding a field research project allows one to point out challenges and constraints connected to the enactment of the research process as a social accomplishment. (shrink)

This study investigates the characteristics of posttraumatic growth (PTG) and academic burnout among adolescents in an ethnic minority area in China during the COVID-19 pandemic, and examines the moderating role of core belief challenge on the association between PTG and academic burnout. This study surveyed 941 secondary school students in Wenchuan using the posttraumatic growth inventory, adolescent academic burnout inventory, core beliefs inventory, and a self-designed demographic questionnaire. The results showed that: (1) Five months after the COVID-19 outbreak in China, (...) the level of PTG among adolescents in the Wenchuan area was high and its prevalence was 32.3%. Among them, the dimension of perceived changes in self was the highest, and the PTG level of junior high school students was higher than that of high school students. The academic burnout level of adolescents, particularly emotional exhaustion, was also high. The academic burnout level of the high school students was higher than that of junior high school students. (2) There was a significant negative correlation between PTG and academic burnout among adolescents. (3) Core belief challenge moderated the relationship between PTG and academic burnout. PTG had a significant negative predictive effect on adolescents’ academic burnout only when the core belief challenge was above a moderate level. These results showed the uniqueness of PTG and psychological behavioral problems of adolescents in ethnic minority areas during the COVID-19 pandemic. They also emphasized the key role of core belief challenge in the process of PTG in reducing adolescents’ academic burnout. Based on these results, recommendations are provided to alleviate academic burnout among adolescents in Wenchuan against the background of the COVID-19 pandemic. While providing full play to ethnic minority cultural characteristics to promote posttraumatic growth, guiding adolescents’ value reflection and cognitive reconstruction should be focused on. (shrink)

Purpose: The purpose of the study was to assess the socio-economic challenges faced by CoG-Kenya in poverty alleviation in Emuhaya District, Western Kenya.Methodology: This study was a cross-sectional research that sought to give an examining and descriptive scrutiny of the CoG-K’s activities in Emuhaya District of Western Kenya. This study sampled a total of 312 respondents (1 Bishop, 1 General Secretary, 1 General Assembly Trustee, 1 General Assembly Treasurer, 16 Directors, 282 Pastors, and 10 Elders) through purposive sampling method. (...) Oral interviews, questionnaire methods and focus group discussion were used to collect data from the respondents. Observation method was used to validate the information obtained through oral interviews and questionnaires. Secondary data was sourced from published and unpublished literature. Data was analyzed using the theological method of induction (TMI).Results: The study concludes that as much as the CoG-K has made concerted attempts towards development in Emuhaya District by influencing the peoples thinking on legitimacy of wealth and education, and on the moral value of saving and investing. However some of its programs and ceremonial functions like ordination, baptism, marriage and weddings tend to retard these efforts of alleviating poverty. Although such programs and celebrations serve the poor at the grassroots level, they delay change in behavioural and institutional transformation capable of sustaining economic growth.Unique contribution to theory, practice and policy: There is a need to change cultural practises that tend to retard development among the adherents of the CoG-K in Emuhaya District. The study posits that cultural practices surrounding marriage and death that are repugnant and detrimental to change should be discarded if development is to take place. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Aristophanes' Thesmophoriazousai and the Challenges of Comic Translation:The Case of William Arrowsmith's Euripides AgonistesElizabeth ScharffenbergerThesmophoriazousai is conspicuously absent from the well-known and widely used series of Aristophanes translations that, under the editorial supervision of William Arrowsmith, was published originally by the University of Michigan Press and then taken up by New American Library. This is not to say, however, that a translation of the comedy was never composed (...) for this series. Arrowsmith took the task upon himself and began his translation of Thesmophoriazousai some time before 1960 when the Aristophanes series was at the height of its production; in later years, he revised his text at least once, and the evidence points to 1968-1973 as the principal period during which the translation was reworked. The cover page on the manuscript that he sent me in 1991 indicates that an introduction and notes (standard in this series) were to accompany the translation, but the package I received contained only the translated text, and I have no idea whether the notes and commentary were ever composed or finished. The text of the translation has a handful of typographical errors and minor inconsistencies in the directions on costuming and staging, which seem to mark the project as an arrested work in progress.The unpublished creation of a renowned classicist who was also a prolific and respected translator, Arrowsmith's Thesmophoriazousai — titled on the manuscript's cover page, Euripides Agonistes (Thesmophoriazousae)— provides an exciting venue for exploring the challenges involved in translating Aristophanes for contemporary English-speaking audiences. My purposes in this paper are thus twofold. I want to examine selected aspects of Arrowsmith's version of this comedy and also advance some general ideas about the challenges involved in translating the plays of Aristophanes and, for that matter, any comic work. My endeavor on both scores will be both preliminary and cursory; there is no way to do justice to every feature of this translation in a few pages or to [End Page 429] produce a complete theory of comic translation. But I hope that I can suggest a reasonably systematized foundation for analyzing the choices Arrowsmith made in his rendering of Thesmophoriazousai and, at the same time, present a set of criteria that might have broader use to people who rely on all kinds of comic translations.The "Frames" of Comic TranslationThere are very few works that treat, from either practical or theoretical perspectives, the translation of comic works and comic devices such as parodies and puns. These works include an essay on translating Ari-stophanes published in 1960 by Arrowsmith, titled "The Lively Conventions of Translation," as well as Douglass Parker's 1992-93 Arion essay in Arrowsmith's memory and André Lefevere's Translating Literature: Practice and Theory in a Comparative Literature Context. Their consensus is that translating comedy, especially Aristophanic comedy, poses formidable and unique challenges.1The most obvious challenge is the topicality of jokes and comic scenarios. According to Arrowsmith, "It is initially the hard facts of culture that most torment the translator of Greek comedy.... Tragedy... keeps a decent distance from common life, but comedy dumps into the translator's lap an intolerable profusion of things—odd bits of clothing, alien cuisine... unfamiliar currency, etc." (1960, 123). Thesmophoriazousai bears out this observation; it overflows with difficult "things" and "hard facts" to translate, beginning with the many props and elements of costume that come into play in the prologue with the appearance of Agathon and the dressing of the Kinsman, and including such crucial items as Mica's wineskin "baby." The problem of "translating" these objects is compounded by the challenges involved in making intelligible the comedy's preoccupation with Euripides and its many-layered engagement with Euripidean tragedy, which give rise to the parodies of Telephus, Palamedes, Helen, and Andromeda. These parodies go hand in hand with countless theatrical in-jokes and self-conscious references to local Athenian theatrical practices. Then there are the play's festal performance context (the Dionysia) and festal setting (the Thesmophoria), its allusions to local forensic and judicial procedures, and its caricatures of figures such as Agathon and Cleisthenes who, like Euripides, would have... (shrink)

Nonnaturalist realism is the view that normative properties are unique kind of stance-independent properties. It has been argued that such views fail to explain why two actions that are exactly alike otherwise must also have the same normative properties. Mark Schroeder and Knut Olav Skarsaune have recently suggested that nonnaturalist realists can respond to this supervenience challenge by taking the primary bearers of normative properties to be action kinds. This paper develops their response in two ways. First, it provides (...) additional motivation for the previous claim about the bearers of normative properties by drawing from the work of H. A. Prichard. Second, and more importantly, it formulates a plausible metaphysical framework based on the contemporary trope theory to explain why action kinds would have their second-order properties, including their normative properties, necessarily. (shrink)

The extant literature on comparative Corporate Social Responsibility often assumes functioning and enabling institutional arrangements, such as strong government, market and civil society, as a necessary condition for responsible business practices. Setting aside this dominant assumption and drawing insights from a case study of Fidelity Bank, Nigeria, we explore why and how firms still pursue and enact responsible business practices in what could be described as challenging and non-enabling institutional contexts for CSR. Our findings suggest that responsible business practices in (...) such contexts are often anchored on some CSR adaptive mechanisms. These mechanisms uniquely complement themselves and inform CSR strategies. The CSR adaptive mechanisms and strategies, in combination and in complementarity, then act as an institutional buffer, which enables firms to successfully engage in responsible practices irrespective of their weak institutional settings. We leverage this understanding to contribute to CSR in developing economies, often characterised by challenging and non-enabling institutional contexts. The research, policy and practice implications are also discussed. (shrink)

Presidential commissions come and go by design, and it is reasonable to wonder about the impact of their recommendations. I have been involved in the work of two presidential commissions: as a member of the Advisory Committee on Human Radiation Experiments (from 1994 to 1995) and as senior consultant to the National Bioethics Advisory Commission (from 1999 to 2000) for its report on multinational research. I continue to reflect on and look for the impact of both these commissions.ACHRE's charter included (...) the review of experiments with ionizing radiation sponsored or conducted by the United States government since the 1940s. The committee was also charged with investigating specific intentional releases of radiation into the environment. ACHRE had a somewhat unique difficulty built into its work: the need to make retrospective ethical judgments. With the National Bioethics Advisory Commission, my main role as senior consultant consisted of writing chapters of the report on multinational research for the commissioners’ approval. A more important concern for me as a hired consultant was how to maintain intellectual and moral integrity. Unlike when writing scholarly papers, where I can express my own views, when I was drafting text for a presidential commission, the commissioners’ views took precedence over my own when we disagreed. I wondered, how much could I comply with the commissioners’ positions without compromising my own integrity? (shrink)

Much light has been shed on important features of teaching and learning by Alasdair MacIntyre's writings. Yet there are experiences that are crucial to teaching and learning that are unaddressed in MacIntyre's arguments; experiences that reveal education as a distinctive kind of practice. This paper examines one kind of such experience: an experience I call ‘being pulled up short’. Drawing on the work of Hans-Georg Gadamer and Gerald L. Bruns, I analyse an example of teaching King Lear to argue that (...) being pulled up short is a unique experience of disorientation that cannot be taught merely by pedagogical skill, including the modern tools and approaches provided by constructivist learning theory and meta-cognition. The paper concludes by identifying challenges that being pulled up short poses for the education of disposition, and for the aims and activities of teaching. (shrink)

Classical pragmatism is committed to the thought that philosophy must be relevant to ordinary life. This commitment is frequently employed critically: to show that some idea is irrelevant to ordinary life is to prove it to be expendable. But the commitment is also constructive: pragmatists must strive to make their positive views relevant. Accordingly, one would expect the classical pragmatists to have fixed their attention on ethics, since this is the area of philosophy most attuned to everyday problems. Although ethics (...) was among Dewey’s persistent interests, Peirce wrote almost nothing on the subject, and James wrote very little. But what James did write exerts considerable influence on contemporary pragmatists, many of whom make frequent appeals to the dual components of James’s ethics, pluralism and meliorism. In this paper, we will pose three challenges to Jamesian ethics. As James’s ethics is unique, we begin with a sketch of his view. (shrink)

Variations in colour perception have featured prominently in recent attempts to argue against the view that colours are objective mind-independent properties of the perceptual environment. My aim in this paper is to defend the view that colours are mind-independent properties in response to worries arising from one type of empirically documented case of perceptual variation: variation in the perception of the «unique hues». §1 sets out the challenge raised by variation in the perception of the unique hues. I (...) argue in §2 that the empirical findings are less dramatic than they might initially appear, and in §3 that accounting for the inter-personal differences is consistent with the view that colours are mind-independent properties that normal subjects veridically perceive, at least roughly speaking. (shrink)

Mr. Wellman’s highly original contribution to the relatively new field of justification in ethics consists of characterizing the different ways in which ethical statements can be challenged and showing how each sort of challenge can be met by an appropriate response, enabling reasonable men to appropriately discuss or reflect on ethical issues. In developing his unique, systematic, methodology of ethics, Mr. Wellman has, first, rigorously reviewed and refuted the main arguments for the view of the nature of all reasoning (...) as deductive and, second, convincingly presented arguments for the existence of nondeductive evidences in ethics. Mr. Wellman’s broad definition of reasoning and his rejection of the identification of justification with reasoning reveals new dimensions of justification which will have wide implications in other areas of human speculation. (shrink)

As artificial intelligence systems are becoming increasingly autonomous and will soon be able to make decisions on their own about what to do, AI researchers have started to talk about the need to align AI with human values. The AI ‘value alignment problem’ faces two kinds of challenges—a technical and a normative one—which are interrelated. The technical challenge deals with the question of how to encode human values in artificial intelligence. The normative challenge is associated with two questions: “Which (...) values or whose values should artificial intelligence align with?” My concern is that AI developers underestimate the difficulty of answering the normative question. They hope that we can easily identify the purposes we really desire and that they can focus on the design of those objectives. But how are we to decide which objectives or values to induce in AI, given that there is a plurality of values and moral principles and that our everyday life is full of moral disagreements? In my paper I will show that although it is not realistic to reach an agreement on what we, humans, really want as people value different things and seek different ends, it may be possible to agree on what we do not want to happen, considering the possibility that intelligence, equal to our own, or even exceeding it, can be created. I will argue for pluralism which is compatible with objectivism. In spite of the fact that there is no uniquely best solution to every moral problem, it is still possible to identify which answers are wrong. And this is where we should begin the value alignment of AI. (shrink)

Brain-computer interfaces (BCIs) have been successfully used by adults, but little information is available on BCI use by children, especially children with severe multiple impairments who may need technology to facilitate communication. Here we discuss the challenges of using non-invasive BCI with children, especially children who do not have another established method of communication with unfamiliar partners. Strategies to manage these challenges require consideration of multiple factors related to accessibility, cognition, and participation. These factors include decisions regarding where (...) (home, clinic, or lab) participation will take place, the number of sessions involved, and the degree of participation necessary for success. A strategic approach to addressing the unique challenges inherent in BCI use by children with disabilities will increase the potential for successful BCI calibration and adoption of BCI as a valuable access method for children with the most significant impairments in movement and communication. (shrink)

Advances in neuromodulation and an improved understanding of the anatomy and circuitry of psychopathology have led to a resurgence of interest in surgery for psychiatric disease. Clinical trials exploring deep brain stimulation (DBS), a focally targeted, adjustable and reversible form of neurosurgery, are being developed to address the use of this technology in highly selected patient populations. Psychiatric patients deemed eligible for surgical intervention, such as DBS, typically meet stringent inclusion criteria, including demonstrated severity, chronicity and a failure of conventional (...) therapy. Although a humanitarian device exemption by the US Food and Drug Administration exists for its use in obsessive-compulsive disorder, DBS remains a largely experimental treatment in the psychiatric context, with its use currently limited to clinical trials and investigative studies. The combination of a patient population at the limits of conventional therapy and a novel technology in a new indication poses interesting challenges to the informed consent process as it relates to clinical trial enrollment. These challenges can be divided into those that relate to the patient, their disease and the technology, with each illustrating how traditional conceptualisations of research consent may be inadequate in the surgical psychiatry context. With specific reference to risk analysis, patient autonomy, voluntariness and the duty of the clinician-researcher, this paper will discuss the unique challenges that clinical trials of surgery for refractory psychiatric disease present to the consent process. Recommendations are also made for an ethical approach to clinical trial consent acquisition in this unique patient population. (shrink)

In light of rapid globalization, there has been an increase in U.S. psychologists conducting international cross-cultural research. Such researchers face unique ethical dilemmas. Although the American Psychological Association has its own Code of Ethics with guidelines regarding research, these guidelines do not specifically address international and cross-cultural research. The purposes of this article are to (a) provide a review of current ethical guidelines for research on human subjects, (b) provide a review of major ethical challenges and dilemmas in (...) conducting cross-cultural research, (c) highlight several existing frameworks that maybe useful for increasing cross-cultural understanding of these ethical challenges for U.S. psychologists, and (d) issue a call to the American Psychological Association to begin to assess and evaluate the nature and extent of ethical problems in conducting cross-cultural research among its members. (shrink)