The conception of saviour siblings using preimplantation genetic diagnosis coupled with human leukocyte antigen typing or HLA typing alone is controversial and receives a wide divergence of legal responses among countries around the world. The resulting child conceived through this procedure is dubbed a ‘saviour sibling’ as the child can potentially act as a compatible donor for an elder ailing sibling who needs a haematopoietic stem cell transplantation. At present, the acceptability of this procedure in Malaysia is ambiguous as there (...) is no specific statute governing assisted reproductive technology, and the guideline issued by the Malaysian Medical Council does not expressly address this issue. The ethical arguments relating to the conception of saviour siblings in the current literature are mainly thought to reflect a liberal viewpoint which is predominantly Western in nature. This paper seeks to explore the perception of selected key stakeholders on the acceptability of and ethical concerns related to this procedure in the Malaysian context. The findings indicate that stakeholders generally support the conception of saviour siblings and some of their concerns echo the Western viewpoint. Interestingly, many were highly anxious about its economic implication, which is rarely discussed in the current literature on saviour siblings. (shrink)

The advancement of human reproductive technology has made it possible for parents with a child affected by a haematological disorder to select and bring into being, a prospective child who can act as a matched stem cell donor. This can be done through the use of preimplantation genetic diagnosis (PGD) coupled with human leukocyte antigen (HLA) typing (PGD-HLA typing), or HLA tying as a standalone procedure, where a healthy embryo, which is an HLA match to the existing sick sibling, is (...) chosen for implantation. The creation of such a sibling (saviour sibling) is normally taken as a last resort when there is no related or unrelated matched donor. While the conception of a saviour sibling may serve as a reliable and realistic treatment option for the ailing child, it also poses new moral questions that challenge a religiously pluralistic society such as Malaysia. The use of PGD-HLA typing may be controversial as it involves creating a life to save a life, selection of compatible human embryos and destruction of the unselected embryos. At present, there is no legal framework regulating the conception of saviour siblings. The development of ethically sound and appropriate local laws and policies should consider the views of religious communities, especially when it involves a controversial subject such as the conception of saviour siblings. This article seeks to explore the perceptions of religious scholars and representatives of the major religions professed and practised in Malaysia, namely Islam, Buddhism, Christianity and Hinduism, through qualitative interviews. (shrink)

The welfare and protection of human subjects is critical to the integrity of clinical investigation and research. Institutional review boards were thus set up to be impartial reviewers of research protocols in clinical research. Their main role is to stand between the investigator and her human subjects in order to ensure that the welfare of human subjects are protected. While there is much literature on the conflicts of interest faced by investigators and researchers in clinical investigations, an area that is (...) less explored is CIs that may affect members of IRBs during the institutional ethics review of clinical investigations. This article examines the notion of CIs in clinical research and attempts to develop a framework for a clearer and more balanced approach to identifying CIs that may influence members of IRBs and impede their independence. It will also apply the proposed framework to demonstrate how IRBs possess, or at least may appear to possess, forms of financial CIs and non-financial CIs. The proper identification and management of these CIs is critical to preserving the integrity of clinical investigations and achieving the primary aim of human subjects protection. (shrink)

This article examines issues relating to ethics decision-making in clinical trials. The overriding concern is to ensure that the well being and the interests of human subjects are adequately safeguarded. In this respect, this article will embark on a critical analysis of the ICH-GCP Guideline. The purpose of such an undertaking is to highlight areas of concern and the shortcomings of the existing ICH-GCP Guideline. Particular emphasis is made on how ethics committees perform their duties and responsibilities in line with (...) the principles outlined in the ICH-GCP Guideline. This article will draw attention to the need for a new approach to addressing the weaknesses of the ICH-GCP Guideline in its present form. (shrink)

This article examines issues relating to ethics decision‐making in clinical trials. The overriding concern is to ensure that the well being and the interests of human subjects are adequately safeguarded. In this respect, this article will embark on a critical analysis of theICH‐GCP Guideline. The purpose of such an undertaking is to highlight areas of concern and the shortcomings of the existingICH‐GCP Guideline. Particular emphasis is made on how ethics committees perform their duties and responsibilities in line with the principles (...) outlined in theICH‐GCP Guideline. This article will draw attention to the need for a new approach to addressing the weaknesses of theICH‐GCP Guideline in its present form. (shrink)

Background Healthcare professionals face a myriad of ethical challenges during the coronavirus disease 2019 pandemic. However, there is limited literature examining the ethical challenges faced by HCPs in low- and medium-income countries. The research was designed to explore the ethical challenges experienced by HCPs in a Malaysian hospital setting during the pandemic. Methods Semistructured interviews were conducted via video calls with 10 Malaysian HCPs across different clinical disciplines involved in managing patients diagnosed with COVID-19 infections. The calls were audio-recorded, transcribed (...) verbatim and checked. Thematic analysis with constant comparison across transcripts was carried out to identify categories and themes. Results Three main themes emerged. Firstly, there was deprioritisation of care for non-COVID-19 patients resulting from resource limitations. HCPs raised concerns that there was curtailed access to various healthcare services by non-COVID-19 patients. There was also a trade-off between protecting individual patient safety and public health interests. Secondly, patients were disempowered from decision-making; the decision to segregate suspected COVID-19 patients to high-risk areas without seeking patients’ approval may result in an increased risk of infection. Lastly, HCPs expressed internal conflicts when balancing the professional duty of care against concerns about contracting COVID-19 and spreading it to their family members. Conclusion The study highlighted ethical issues faced by HCPs in Malaysia during the pandemic. It underscores the need for clinical ethics consultation services in hospitals to navigate the various ethical dilemmas. (shrink)

The COVID-19 pandemic revealed numerous weaknesses in pandemic preparedness and response, including underfunding, inadequate surveillance, and inequitable distribution of countermeasures. To overcome these weaknesses for future pandemics, WHO released a zero draft of a pandemic treaty in February, 2023, and subsequently a revised bureau's text in May, 2023. COVID-19 made clear that pandemic prevention, preparedness, and response reflect choices and value judgements. These decisions are therefore not a purely scientific or technical exercise, but are fundamentally grounded in ethics. The latest (...) treaty draft reflects these ethical considerations by including a section entitled Guiding Principles and Approaches. Most of these principles are ethical—they establish core values that undergird the treaty. Unfortunately, the treaty draft's set of principles are numerous, overlapping, and show inadequate coherence and consistency. We propose two improvements to this section of the draft pandemic treaty. First, key guiding ethical principles should be clearer and more precise than they currently are. Second, the link between ethical principles and policy implementation should be clearly established and define boundaries on acceptable interpretation, ensuring that signatories abide by these principles. (shrink)

Healthcare facilities in receiving countries regularly encounter guest workers whose need for acute or subacute care triggers the prospect of termination of employment and repatriation. In these scenarios, country‐specific migration and employment policies and norms of medical professionalism and ethics offer some guidance, but also create tensions. It is not clear under what conditions such medical repatriation is ethically permissible.This paper analyses the application of a previously articulated criteria for the ethical medical repatriation of undocumented immigrants, to the situation of (...) documented guest workers, with focus on the context of Singapore. We examine how these standards could be adapted and applied to the provision of care for guest workers, and argue that healthcare institutions and medical professionals have a duty to intervene in employers’ decisions to repatriate guest workers for medico‐economic reasons when repatriation essentially amounts to ‘patient dumping’. Barriers and challenges in implementing the criteria, and their possible solutions will be discussed. (shrink)

The COVID-19 pandemic has inspired numerous opportunities for telehealth implementation to meet diverse healthcare needs, including the use of virtual communication platforms to facilitate the growth of and access to clinical ethics consultation (CEC) services across the globe. Here we discuss the conceptualization and implementation of two different virtual CEC services that arose during the COVID-19 pandemic: the Clinical Ethics Malaysia COVID-19 Consultation Service and the Johns Hopkins Hospital Ethics Committee and Consultation Service. A common strength experienced by both platforms (...) during virtual delivery included improved ability for local practitioners to address consultation needs for patient populations otherwise unable to access CEC services in their respective locations. Additionally, virtual platforms allowed for enhanced collaboration and sharing of expertise among ethics consultants. Both contexts encountered numerous challenges related to patient care delivery during the pandemic. The use of virtual technologies resulted in decreased personalization of patient-provider communication. We discuss these challenges with respect to contextual differences specific to each service and setting, including differences in CEC needs, sociocultural norms, resource availability, populations served, consultation service visibility, healthcare infrastructure, and funding disparities. Through lessons learned from a health system in the United States and a national service in Malaysia, we provide key recommendations for health practitioners and clinical ethics consultants to leverage virtual communication platforms to mitigate existing inequities in patient care delivery and increase capacity for CEC globally. (shrink)

This article argues that outbreak preparedness and response should implement a ‘family presence’ policy for infected patients in isolation that includes the option of physical visits and care within the isolation facility under some conditions. While such a ‘physical family presence’ policy could increase infections during an outbreak and may raise moral dilemmas, we argue that it is ethically justified based on the least infringement principle and the need to minimize the harms and burdens of isolation as a restrictive measure. (...) Categorical prohibition of PFP during the course of an outbreak or epidemic is likely to result in unnecessary harms to patients and families, and violate values such as the moral commitments of families to care for each other. Supporting the option of PFP under particular circumstances, on the other hand, will least infringe these moral considerations. An additional reason for a family presence policy is that it may facilitate voluntary cooperation with isolation and other restrictive measures. We provide an analysis of these considerations for supporting modes of family presence during an outbreak emergency, before defending the riskier option of PFP in the isolation facility from plausible objections and concerns. (shrink)

There is at present, far too little empirical research into the actual decision-making process of Institutional Review Boards and it is sobering to be reminded by Robert Klitzman's article that while theoretical debates might rage and prove fertile ground for new theories and better ways of approaching research ethics; ethics committee members must try to make sense of these concepts and apply them in very practical situations.1 Klitzman provides important insights into the ….

Developing World Bioethics, Volume 21, Issue 4, Page 227-236, December 2021.

The shift towards "empirical bioethics" was largely triggered by a recognition that stakeholders' views and experiences are vital in ethical analysis where one hopes to produce practicable recommendations. Such perspectives can provide a rich resource in bioethics scholarship, perhaps challenging the researcher's perspective. However, overreliance on a picture painted by a group of research participants—or on pre‐existing literature in that field—can lead to a biased view of a given context, as the subjectivity of data generated in these ways cannot (and (...) should not wholly) be escaped. In response, we propose the implementation of a complementary approach of ethno‐immersion in bioethics research. By positioning oneself in the context being researched, the researcher can better understand the realities of that context. The researcher's understanding will, naturally, be subjective too. However, it will act as a better developed and more informed outsider view, when considering the picture painted by participants and previous studies, thus enabling the researcher to introduce more nuance when analysing data. We introduce this approach after examining what we call the context detachment problem, whereby some bioethics scholarship—empirical or otherwise—fails to reflect the reality of the healthcare setting it concerns. Our proposed ethno‐immersion (which differs from formal ethnography) is then explored as a response, highlighting its benefits, and answering the question of timing within a research project. Finally, we reflect on the applicability of our proposal to non‐empirical bioethics scholarship, concluding that it remains important but may require some adjustments. (shrink)

Although Rawls insists that his argument for his theory of justice neither addresses nor requires that we settle in advance any of the deep questions of philosophy, there are nonetheless more subtle ways in which his work may bear on such questions. The article explores how Rawls’s work may advance our thinking on the general philosophical question of how language affects thought, by enabling us to assess the conceptual consequences of two alternative metaphors for describing our activity when we engage (...) in critical self-reflection. The effects on our thinking of our common use of the metaphor of ‘stepping back’ to describe this activity are contrasted with those of an alternative metaphor suggested by Rawls’s work. The resulting conclusions are then employed to illuminate Rawls’s reply to an interesting objection to his theory raised by Michael Sandel. (shrink)

Background In the coronavirus disease 2019 era, doctors have tried to decrease hospital visits and admissions. To this end, telemedicine was implemented in a non-systematic manner according. The objective of this study was to assess the current knowledge and attitudes of physicians in Alexandria, Egypt, and Punjab, India, toward telemedicine and its ethical and medico-legal issues. Method A cross-sectional study was implemented using an anonymous self-administered questionnaire carried out over two months (July and August 2020). A four-point Likert scale was (...) used to collect data about background knowledge, training in telemedicine and ethical and medico-legal issues in telemedicine practice. Results The questionnaire was completed by 175 Egyptian and 51 Indian physicians from different specialties. A significantly higher percentage of Indian physicians practiced telemedicine than Egyptian physicians during the coronavirus disease 2019 era. Although most physicians had no specific training or licensing to practice telemedicine, most of them practiced telemedicine through their social media accounts. Ethical violations involving waiving patient consent were detected. Significant ethical violations to doctors, for example, blackmail, defamation, hate speech, accusations in a court and violations of privacy, were observed. Indian physicians (39.2%) and Egyptian physicians (24%) thought the penalties should be lower in telemedicine than in traditional practice. Finally, most participants would like to continue using telemedicine after the coronavirus disease 2019 era but with improvements. Conclusions Coronavirus disease 2019 changed the acceptance of telemedicine by physicians. Many ethical and legal issues need to be addressed and clarified using formal training before implementation and standardization of telemedicine services. (shrink)

Michael A PetersBeijing Normal UniversityChatGPT is an AI chatbot released by OpenAI on November 30, 2022 and a ‘stable release’ on February 13, 2023. It belongs to OpenAI’s GPT-3 family (generativ...

The 17th Century English philosopher Thomas Hobbes is now widely regarded as one of a handful of truly great political philosophers, whose masterwork Leviathan rivals in significance the political writings of Plato, Aristotle, Locke, Rousseau, Kant, and Rawls. Hobbes is famous for his early and elaborate development of what has come to be known as “social contract theory”, the method of justifying political principles or arrangements by appeal to the agreement that would be made among suitably situated rational, free, and (...) equal persons. He is infamous for having used the social contract method to arrive at the astonishing conclusion that we ought to submit to the authority of an absolute— undivided and unlimited—sovereign power. While his methodological innovation had a profound constructive impact on subsequent work in political philosophy, his substantive conclusions have served mostly as a foil for the development of more palatable philosophical positions. Hobbes's moral philosophy has been less influential than his political philosophy, in part because that theory is too ambiguous to have garnered any general consensus as to its content. Most scholars have taken Hobbes to have affirmed some sort of personal relativism or subjectivism; but views that Hobbes espoused divine command theory, virtue ethics, rule egoism, or a form of projectivism also find support in Hobbes's texts and among scholars. Because Hobbes held that “the true doctrine of the Lawes of Nature is the true Morall philosophie”, differences in interpretation of Hobbes's moral philosophy can be traced to differing understandings of the status and operation of Hobbes's “laws of nature”, which laws will be discussed below. The formerly dominant view that Hobbes espoused psychological egoism as the foundation of his moral theory is currently widely rejected, and there has been to date no fully systematic study of Hobbes's moral psychology. (shrink)

The COVID-19 pandemic is putting the NHS under unprecedented pressure, requiring clinicians to make uncomfortable decisions they would not ordinarily face. These decisions revolve primarily around intensive care and whether a patient should undergo invasive ventilation. Certain vulnerable populations have featured in the media as falling victim to an increasingly utilitarian response to the pandemic—primarily those of advanced years or with serious existing health conditions. Another vulnerable population potentially at risk is those who lack the capacity to make their own (...) care decisions. Owing to the pandemic, there are increased practical and normative challenges to following the requirements of the Mental Capacity Act 2005. Both capacity assessments and best interests decisions may prove more difficult in the current situation. This may create a more paternalistic situation in decisions about the care of the cognitively impaired which is at risk of taking on a utilitarian focus. We look to these issues and consider whether there is a risk of patients who lack capacity to make their own care decisions being short-changed. (shrink)

In many ways set theory lies at the heart of modern mathematics, and it does powerful work both philosophical and mathematical – as a foundation for the subject. However, certain philosophical problems raise serious doubts about our acceptance of the axioms of set theory. In a detailed and original reassessment of these axioms, Sharon Berry uses a potentialist approach to develop a unified determinate conception of set-theoretic truth that vindicates many of our intuitive expectations regarding set theory. Berry further (...) defends her approach against a number of possible objections, and she shows how a notion of logical possibility that is useful in formulating Potentialist set theory connects in important ways with philosophy of language, metametaphysics and philosophy of science. Her book will appeal to readers with interests in the philosophy of set theory, modal logic, and the role of mathematics in the sciences. (shrink)

Dynamic Consent is both a model and a specific web-based tool that enables clear, granular communication and recording of participant consent choices over time. The DC model enables individuals to know and to decide how personal research information is being used and provides a way in which to exercise legal rights provided in privacy and data protection law. The DC tool is flexible and responsive, enabling legal and ethical requirements in research data sharing to be met and for online health (...) information to be maintained. DC has been used in rare diseases and genomics, to enable people to control and express their preferences regarding their own data. However, DC has never been explored in relationship to historical collections of bioscientific and genetic heritage or to contexts involving Aboriginal and Torres Strait Islander people.In response to the growing interest by First Peoples throughout Australia in genetic and genomic research, and the increasing number of invitations from researchers to participate in community health and wellbeing projects, this article examines the legal and ethical attributes and challenges of DC in these contexts. It also explores opportunities for including First Peoples' cultural perspectives, governance, and leadership as a method for defining DC on cultural terms that engage best practice research and data analysis as well as respect for meaningful and longitudinal individual and family participation. (shrink)

Background/IntroductionInfertile couples that travel to another country for reproductive treatment do not refer to themselves as “reproductive tourists”. They might even be offended by this term. “Tourism” is a metaphor with hidden connotations. We will analyze these connotations in public media discourses on “reproductive tourism” in Israel and Germany. We chose to focus on these two countries since legal, ethical and religious restrictions give couples a similar motivation to travel for reproductive care, while the cultural backgrounds and conceptions of reproduction (...) are different. Results: Our research shows that the use of the metaphor “reproductive treatment” and its hidden messages depends on the writers’ intention and the target population. Although the phenomenon of patients travelling for reproductive treatment can fit into the definitions of tourism, the term emphasizes aspects that do not reflect patients’ reality. In both the German and the Israeli public media debate the term “reproductive tourism” is either used to criticize the economic aspects of the phenomenon or to attract patients as potential clients. Conclusions: Ethicists should be cautious when borrowing metaphors like “reproductive tourism” from the public debate. Our findings support Penning’s suggestion to use instead an unloaded term like cross-border reproductive care to describe the phenomenon in a more neutral way and to make it explicit whenever criticism is necessary. (shrink)

We report the identification of a recurrent, 520-kb 16p12.1 microdeletion associated with childhood developmental delay. The microdeletion was detected in 20 of 11,873 cases compared with 2 of 8,540 controls and replicated in a second series of 22 of 9,254 cases compared with 6 of 6,299 controls. Most deletions were inherited, with carrier parents likely to manifest neuropsychiatric phenotypes compared to non-carrier parents. Probands were more likely to carry an additional large copy-number variant when compared to matched controls. The clinical (...) features of individuals with two mutations were distinct from and/or more severe than those of individuals carrying only the co-occurring mutation. Our data support a two-hit model in which the 16p12.1 microdeletion both predisposes to neuropsychiatric phenotypes as a single event and exacerbates neurodevelopmental phenotypes in association with other large deletions or duplications. Analysis of other microdeletions with variable expressivity indicates that this two-hit model might be more generally applicable to neuropsychiatric disease. © 2010 Nature America, Inc. All rights reserved. (shrink)

Contemporary realist theories of value claim to be compatible with natural science. In this paper, I call this claim into question by arguing that Darwinian considerations pose a dilemma for these theories. The main thrust of my argument is this. Evolutionary forces have played a tremendous role in shaping the content of human evaluative attitudes. The challenge for realist theories of value is to explain the relation between these evolutionary influences on our evaluative attitudes, on the one hand, and the (...) independent evaluative truths that realism posits, on the other. Realism, I argue, can give no satisfactory account of this relation. On the one hand, the realist may claim that there is no relation between evolutionary influences on our evaluative attitudes and independent evaluative truths. But this claim leads to the implausible skeptical result that most of our evaluative judgements are off track due to the distorting pressure of Darwinian forces. The realist’s other option is to claim that there is a relation between evolutionary influences and independent evaluative truths, namely that natural selection favored ancestors who were able to grasp those truths. But this account, I argue, is unacceptable on scientific grounds. Either way, then, realist theories of value prove unable to accommodate the fact that Darwinian forces have deeply influenced the content of human values. After responding to three objections, the third of which leads me to argue against a realist understanding of the disvalue of pain, I conclude by sketching how antirealism is able to sidestep the dilemma I have presented. Antirealist theories of value are able to offer an alternative account of the relation between evolutionary forces and evaluative facts —
an account that allows us to reconcile our understanding of evaluative truth with our understanding of the many non-rational causes that have played a role in shaping our evaluative judgements. (shrink)

Diderot's Supplement to the Voyage of Bougainville has often been read as a Rousseauian condemnation of modern civilization judged against the standard of pure Nature. A cursory reading of the Supplement does appear to present Tahiti as a natural utopia and Europe as a civilized prison. This essay rejects such a reading by demonstrating that the Supplement actually undermines any clear opposition between virtuous nature, represented by Tahiti, and corrupt civilization, represented by Europe. Although Diderot truly does offer a stinging (...) critique of modern Europe, he refuses to offer "nature" as a redemptive alternative. Instead, the Supplement offers an implicit critique of the politics of moralism. (shrink)

How much responsibility ought a professional engineer to have with regard to supporting basic principles of sustainable development? While within the United States, professional engineering societies, as reflected in their codes of ethics, differ in their responses to this question, none of these professional societies has yet to put the engineer’s responsibility toward sustainability on a par with commitments to public safety, health, and welfare. In this paper, we aim to suggest that sustainability should be included in the paramountcy clause (...) because it is a necessary condition to ensure the safety, health, and welfare of the public. Part of our justification rests on the fact that to engineer sustainably means among many things to consider social justice, understood as the fair and equitable distribution of social goods, as a design constraint similar to technical, economic, and environmental constraints. This element of social justice is not explicit in the current paramountcy clause. Our argument rests on demonstrating that social justice in terms of both inter- and intra-generational equity is an important dimension of sustainability (and engineering). We also propose that embracing sustainability in the codes while recognizing the role that social justice plays may elevate the status of the engineer as public intellectual and agent of social good. This shift will then need to be incorporated in how we teach undergraduate engineering students about engineering ethics. (shrink)

Numerous studies have shown almost uniformly positive opinions among patients and physicians regarding theconceptof advance directives (either a healthcare proxy or living will). Several of these studies have also shown that the actual use of advance directives is significantly lower than this enthusiasm would suggest, but they have not explained the apparent discordance. Nor have researchers explained why members of minority groups are much less likely to complete advance directives than are white patients. In this study, we used a focus (...) group methodology to examine the ways in which diverse populations of patients view the medical, philosophical, and practical issues surrounding advance directives. We were motivated by the significantly lower prevalence of advance directives among African-American and Hispanic patients at one urban teaching hospital (18% for Caucasians, 4% for African-Americans, and 2% for Hispanics). Our premise was that African-American and Hispanic populations, who have had higher rates of morbidity and mortality across numerous disease categories, and historically have had limited access to care and opportunities to discuss health concerns, may be more suspicious about the right of autonomy that an advance directive is designed to ensure. (shrink)

Communication is an integral part of nursing practice—with patients and their relatives, other nurses and members of the healthcare team, and ancillary staff. Through interaction with the ‘other’, language and silence creates and recreates social realities. Acceptance, rejection or modification of social realities depends on what is expressed and by whom. Narratives that are offered can tell of some experiences and not others. Some nurses choose to be silent while others are silenced. In nursing situations recognising and allowing silence to (...) speak is a challenging but uniquely personal experience that embraces reflection in and on experiences, practice and self as a person and a professional. If enabled and truly heard, silence can speak more loudly than the hubbub of daily practice, allowing us to collectively question and challenge inherent assumptions and biases as professionals, and as a profession. Through a microcosm of Newly Graduated Nurses' lived experiences of nursing situations and expressions of silence individuals' discomfort and private efforts to ascribe meaning to experiences are reflected on. Returning to silence is to return to a constant process of professional transformation that can enable ways of knowing and being that can reform our profession from within and enable us to cast off shackles that bind us to a shameful cultural underbelly. (shrink)

In Book 2 of The Peloponnesian War, the ancient Greek historian Thucydides describes the Plague of Athens which killed an estimated 75,000 people in 430 BC, the second year of the war. Thucydides i...

Michael A. PetersBeijing Normal University, Beijing, PR China;There is an ecology of bad ideas, just as there is an ecology of weeds– Gregory Bateson (1972, p. 492)While there are classical anteced...