Over the past three or four decades, the concept of medical ethics has changed from a limited set of standards to a broad field of debate and research. We define medical ethics as an arena of moral issues in medicine, rather than a specific discipline. This paper examines how the disciplines of health care ethics and health care law have developed and operated within this arena. Our framework highlights the aspects of jurisdiction and the assignment of responsibilities . This theoretical (...) framework prompted us to study definitions and changing responsibilities in order to describe the development and interaction of health care ethics and health law. We have opted for the context of the Dutch debate about end-of-life decisions as a relevant case study. We argue that the specific Dutch definition of euthanasia as ‘intentionally taking the life of another person by a physician, upon that person’s request’ can be seen as the result of the complex jurisdictional process. This illustrates the more general conclusion that the Dutch debate on end-of-life decisions and the development of the two disciplines must be understood in terms of mutual interaction. (shrink)

Over the past three or four decades, the concept of medical ethics has changed from a limited set of standards to a broad field of debate and research. We define medical ethics as an arena of moral issues in medicine, rather than a specific discipline. This paper examines how the disciplines of health care ethics and health care law have developed and operated within this arena. Our framework highlights the aspects of jurisdiction and the assignment of responsibilities. This theoretical framework (...) prompted us to study definitions and changing responsibilities in order to describe the development and interaction of health care ethics and health law. We have opted for the context of the Dutch debate about end-of-life decisions as a relevant case study. We argue that the specific Dutch definition of euthanasia as ‘intentionally taking the life of another person by a physician, upon that person’s request’ can be seen as the result of the complex jurisdictional process. This illustrates the more general conclusion that the Dutch debate on end-of-life decisions and the development of the two disciplines must be understood in terms of mutual interaction. (shrink)

This paper analyses the concept of empirical ethics as well as three meta-ethical fallacies that empirical ethics is said to face: the is-ought problem, the naturalistic fallacy and violation of the fact-value distinction. Moreover, it answers the question of whether empirical ethics (necessarily) commits these three basic meta-ethical fallacies.

Genetic engineering evokes a number of objections that are not directed at the negative effects the technique might have on the health and welfare of the modified animals. The concept of animal integrity is often invoked to articulate these kind of objections. Moreover, in reaction to the advent of genetic engineering, the concept has been extended from the level of the individual animal to the level of the genome and of the species. However, the concept of animal integrity was not (...) developed in the context of genetic engineering. Given this external origin, the aim of this paper is to critically examine the assumption that the concept of integrity, including its extensions to the level of the genome and the species, is suitable to articulate and justify moral objections more specifically directed at the genetic engineering of animals. (shrink)

We investigated the influence of the compatibility between mood and decision strategies on the subjective value of a decision outcome. Several studies have provided evidence for the idea that a sad mood induces people to analyse information carefully, probably fitting well with a deliberative decision strategy. In a happy mood, people tend to act more strongly on their feelings, probably fitting well with an intuitive decision strategy. However, sometimes the situation demands the use of decision strategies that seem incompatible with (...) mood states. We expected that decision makers would value a decision outcome higher in the case of a fit between mood and decision strategy than in the case of a non-fit. After a mood manipulation, participants were instructed to decide either based on their first affective reaction or after deliberation. Results confirmed our expectations: fitting decisions enhanced the subjective value of a decision outcome. (shrink)

Health technology assessment (HTA) is often biased in the sense that it neglects relevant perspectives on the technology in question. To incorporate different perspectives in HTA, we should pursue agreement about what are relevant, plausible, and feasible research questions; interactive technology assessment (iTA) might be suitable for this goal. In this way a kind of procedural ethics is established. Currently, ethics too often is focussed on the application of general principles, which leaves a lot of confusion as to what really (...) is the matter in specific cases; in an iTA clashes of values should not be approached by use of such ethics. Instead, casuistry, as a tool used within the framework of iTA, should help to articulate and clarify what is the matter, as to make room for explication and consensus building. (shrink)

Health technology assessment (HTA) is often biased in the sense that it neglects relevant perspectives on the technology in question. To incorporate different perspectives in HTA, we should pursue agreement about what are relevant, plausible, and feasible research questions; interactive technology assessment (iTA) might be suitable for this goal. In this way a kind of procedural ethics is established. Currently, ethics too often is focussed on the application of general principles, which leaves a lot of confusion as to what really (...) is the matter in specific cases; in an iTA clashes of values should not be approached by use of such ethics. Instead, casuistry, as a tool used within the framework of iTA, should help to articulate and clarify what is the matter, as to make room for explication and consensus building. (shrink)

From 1991 to 1994 the Dutch Health Insurance Council financed research on Extracorporeal Membrane Oxygenation (ECMO). This is a technique for providing cardiopulmonary bypass to patients with pulmonary and/or cardiac failure. Most often, these patients are premature neonates. During ECMO, blood is drained from the right atrium, pumped along a membrane where gas exchange takes place, and then redirected to the aorta. To prevent blood clotting, heparin is added. However, with the heparin added, the risk of hemorrhage is considerably increased. (...) Therefore, both the chance of surviving and the chance of severe disability are higher with ECMO than with conventional treatment (i.e., ventilator support). (shrink)

The social and legal implications of forensic DNA are paramount. For this reason, forensic DNA enjoys ample attention from legal, bioethics, and science and technology studies scholars. This article contributes to the scholarship by focusing on the neglected issue of sameness. We investigate a forensic courtroom case which started in the early ’90s and focus on three modes of making similarities: creating equality before the law, making identity, and establishing standards. We argue that equality before the law is not merely (...) a principle but a practice. In the context of DNA research, equality refers to using standardized technology and procedures to identify the criminal suspect. Our case shows the work at stake in introducing a new technology into the courtroom and serves as a lens, magnifying how contingencies and uncertainties are managed and ordered in everyday court practices to arrive at an equal treatment of the suspect. (shrink)

ABSTRACT In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This ‘empirical turn’ is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral (...) experiences of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions? In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self‐justification and bias and can increase the credibility of the RE reached. (shrink)

In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This ‘empirical turn’ is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral experiences (...) of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions?In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self‐justification and bias and can increase the credibility of the RE reached. (shrink)

Unearthing the radical potential at the heart of canonical political thought, this book uses the work of Foucault and Deleuze to re-imagine theory in a way that embraces difference and resistance.

Okay, Professor Turner is not Rodney King. He is not responding to bioethicists and social scientists running amuck, setting automobiles aflame, and pelting each other with rocks and broken bottles. He does not come right out and ask, “Why can't we all just get along?” But in its academic way, Turner's essay is an effort to negotiate a truce in the interdisciplinary squabbles that plague bioethics, a plea to move bioethics beyond the “misleading” and “unhelpful” “demarcation of disciplinary goals” that (...) leads to “dichotomous thinking” and “polemical accusations.”. (shrink)

The silencing of the epistemologies, theories, principles, values, concepts and experiences of the global South constitutes a particularly egregious epistemic injustice in bioethics. Our shared responsibility to rectify that injustice should be at the top of the ethics agenda. That it is not, or only is in part, is deeply problematic and endangers the credibility of the entire field. As a first step towards reorienting the field, this paper offers a comprehensive account of epistemic justice for global health ethics. We (...) first introduce several different conceptions of justice and decolonisation in relation to knowledge, purposefully drawing on work emanating from the global South as well as the global North. We then apply those conceptions to the global health ethics context to generate a tripartite account of the layers of epistemic justice in the field: who is producing ethics knowledge; what theories and concepts are being applied to produce ethics knowledge; and whose voices are sought, recorded and used to generate ethics knowledge. These layers reflect that the field spans conceptual and empirical research. We conclude by proposing that, going forward, three avenues are key to achieve greater epistemic justice at each layer and to help decolonise global health ethics: namely, understanding the problem, dialogue and structural change. (shrink)

Community engagement is gaining prominence in global health research. So far, a philosophical rationale for why researchers should perform community engagement during such research has not been provided by ethics scholars. Its absence means that conducting community engagement is still often viewed as no more than a ‘good idea’ or ‘good practice’ rather than ethically required. In this article, we argue that shared health governance can establish grounds for requiring the engagement of low‐ and middle‐income country (LMIC) community members in (...) global health research, where such research aims to help reduce health disparities. This philosophical basis has important implications for the ethical goals ascribed to engagement and the approach adopted to undertake it. We suggest the ethical goals of engagement in equity‐oriented global health research should include: (a) generating research topics and questions that reflect the key problems disadvantaged groups face in accessing healthcare, services and broader social determinants of health and (b) promoting the translation of research findings into policy and practice in ways that benefit the health of disadvantaged groups. We propose engagement practice should have the following features: deliberation with LMIC community members to make a range of project decisions, beginning with setting research topics and questions; inclusion of members of disadvantaged groups and those with the power to change policy and practice to benefit them; and purposeful structuring of deliberations to minimize the impact of power disparities between LMIC community members. Finally, we reflect on how these features differ from those typical of much current community engagement practice in LMICs. (shrink)

The field of bioethics continues to struggle with the problem of cultural diversity: can universal principles guide ethical decision making, regardless of the culture in which those decisions take place? Or should bioethical principles be derived from the moral traditions of local cultures? Ten Have and Gordijn and Bracanovic defend the universalist position, arguing that respect for cultural diversity in matters ethical will lead to a dangerous cultural relativity where vulnerable patients and research subjects will be harmed. We challenge the (...) premises of moral universalism, showing how this approach imports and imposes moral notions of Western society and leads to harm in non-western cultures. (shrink)

Advances in genetic and genomic research have introduced challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for an H3Africa genomic study on Rheumatic Heart Disease at the University of Cape Town in South (...) Africa. The main aim of the study was to understand ethical challenges in obtaining informed consent in the RHDGen study. We used a qualitative study methodology involving in-depth interviews and participant observations. Our study participants were RHDGen cases, healthy controls and research staff involved in the recruitment of RHDGen cases and controls. In total, we conducted 32 in-depth interviews with RHDGen cases and controls, 2 in-depth interviews with research staff and 57 direct observations of the consent procedures of RHDGen cases and controls. The interviews were conducted in English, audio-recorded and transcribed verbatim. Data were analyzed using thematic content analysis. The study was conducted in 3 sites within Cape Town, South Africa. Most healthy controls joined the RHDGen study in order to be screened for rheumatic heart disease. A majority of RHDGen cases decided to join the RHDGen study because of therapeutic misconception. The ethical challenges that impacted on obtaining informed consent in the RHDGen study were complex. In this study, the main challenges were diagnostic misconception among RHDGen controls and therapeutic misconception among RHDGen cases. (shrink)

This article presents the results of a study in The Netherlands among two groups of religious people: i.e., 165 Christian outpatients and 171 parishioners. In this study, we focused on the following main questions. To what degree did these two groups of Christians practice positive religious coping, negative religious coping and receptive coping? What are the relationships between these three coping strategies? To what degree were positive religious, negative religious and receptive coping activities related to the well-being of the respondents? (...) What are the best predictors of well-being: positive religious, negative religious or receptive coping? The results showed that positive religious, negative religious and receptive coping were three independent predictors of well-being, with negative religious coping being the best predictor. (shrink)

The COVID-19 pandemic has had a devastating impact on care homes in the United Kingdom, particularly for those residents living with dementia. The impetus for this article comes from a recent review conducted by the authors. That review, a qualitative media analysis of news and academic articles published during the first few months of the outbreak, identified ethical care as a key theme warranting further investigation within the context of the crisis. To explore ethical care further, a set of salient (...) ethical values for delivering care to care home residents living with dementia during the pandemic was derived from a synthesis of relevant ethical standards, codes and philosophical approaches. The ethical values identified were caring, non-maleficence, beneficence, procedural justice, dignity in death and dying, well-being, safety, and personhood. Using these ethical values as a framework, alongside examples from contemporaneous media and academic sources, this article discusses the delivery of ethical care to care home residents with dementia within the context of COVID-19. The analysis identifies positive examples of ethical values displayed by care home staff, care sector organisations, healthcare professionals and third sector advocacy organisations. However, concerns relating to the death rates, dignity, safety, well-being and personhood – of residents and staff – are also evident. These shortcomings are attributable to negligent government strategy, which resulted in delayed guidance, lack of resources and Personal Protective Equipment, unclear data, and inconsistent testing. Consequently, this review demonstrates the ways in which care homes are underfunded, under resourced and undervalued. (shrink)

BackgroundThe quality of ethics consults is notoriously difficult to measure. Survey-based assessments cannot capture nuances of consultations. To address this gap, we conducted interviews with health professionals who requested ethics consults during the initial phase of the COVID-19 pandemic.MethodHealthcare professionals requesting ethics consultation between March 2020 and May 2020 at a tertiary academic medical centre were eligible to participate. We asked participants to comment on the consults they called and thematically analysed responses to identify features associated with optimal quality consultations.ResultsOf (...) 14 healthcare providers, 8 (57%) were women and professions were as follows: 11 (79%) medical doctors, 1 (7%) social worker, 1 (7%) physician assistant and 1 (7%) nurse practitioner. Two aspects of quality emerged: satisfaction and value. Themes within the domain of satisfaction included: responsiveness of the ethics consultant, willingness to consult, institutional role of the ethics service and identifying areas for improvement. When describing value, respondents spoke of the intrapersonal and interpersonal worth of consultation.ConclusionParticipants were generally satisfied with ethics consultation services, similar to opinions of those found in pre-COVID-19 survey studies. Our qualitative approach allowed for a richer exploration of the value of ethics consultation during the pandemic and has implications for ethics consultation services more broadly. Ethics consultation—emphasising both the process and outcome—created valuable moral spaces, promoting thoughtful and ethical responses to dilemmas in patient care. Future assessments should incorporate patient and family/surrogate perspectives and explore the domain of education as an additional quality measure. (shrink)

Whilst Kolbe and de Melo-Martin (2023) appropriately identify a range of concerns about the validity of existing instruments to measure moral distress, one additional limitation that the authors di...

Modern bioethics was born in the West and thus reflects, not surprisingly, the traditions of Western moral philosophy and political and social theory. When the work of bioethics was confined to the West, this background of socio-political theory and moral tradition posed few problems, but as bioethics has moved into other cultures – inside and outside of the Western world – it has become an agent of moral imperialism. We describe the moral imperialism of bioethics, discuss its dangers, and suggest (...) that global bioethics will succeed only to the extent that it is local. (shrink)

This article discusses the relation between empirical and normative approaches in bioethics. The issue of dwarf tossing, while admittedly unusual, is chosen as a point of departure because it challenges the reader to look with fresh eyes upon several central bioethical themes, including human dignity, autonomy, and the protection of vulnerable people. After an overview of current approaches to the integration of empirical and normative ethics, we consider five ways that the empirical and normative can be brought together to speak (...) to the problem of dwarf tossing: prescriptive applied ethics, theoretical ethics, critical applied ethics, particularist ethics and integrated empirical ethics. We defend a position of critical applied ethics that allows for a two-way relation between empirical and normative theories. Against efforts fully to integrate the normative and the empirical into one synthesis, we propose that the two should stand in tension and relation to one another. The approach we endorse acknowledges that a social practice can and should be judged both by the gathering of empirical data and by normative ethics. Critical applied ethics uses a five stage process that includes: (a) determination of the problem, (b) description of the problem, (c) empirical study of effects and alternatives, (d) normative weighing and (e) evaluation of the effects of a decision. In each stage, we explore the perspective from both the empirical (sociological) and the normative ethical point of view. We conclude by applying our five-stage critical applied ethics to the example of dwarf tossing. (shrink)

BackgroundFor many decades, the debate on children’s competence to give informed consent in medical settings concentrated on ethical and legal aspects, with little empirical underpinnings. Recently, data from empirical research became available to advance the discussion. It was shown that children’s competence to consent to clinical research could be accurately assessed by the modified MacArthur Competence Assessment Tool for Clinical Research. Age limits for children to be deemed competent to decide on research participation have been studied: generally children of 11.2 (...) years and above were decision-making competent, while children of 9.6 years and younger were not. Age was pointed out to be the key determining factor in children’s competence. In this article we reflect on policy implications of these findings, considering legal, ethical, developmental and clinical perspectives.DiscussionAlthough assessment of children’s competence has a normative character, ethics, law and clinical practice can benefit from research data. The findings may help to do justice to the capacities children possess and challenges they may face when deciding about treatment and research options. We discuss advantages and drawbacks of standardized competence assessment in children on a case-by-case basis compared to application of a fixed age limit, and conclude that a selective implementation of case-by-case competence assessment in specific populations is preferable. We recommend the implementation of age limits based on empirical evidence. Furthermore, we elaborate on a suitable model for informed consent involving children and parents that would do justice to developmental aspects of children and the specific characteristics of the parent-child dyad.SummaryPrevious research outcomes showed that children’s medical decision-making capacities could be operationalized into a standardized assessment instrument. Recommendations for policies include a dual consent procedure, including both child as well as parents, for children from the age of 12 until they reach majority. For children between 10 and 12 years of age, and in case of children older than 12 years in special research populations of mentally compromised patients, we suggest a case-by-case assessment of children’s competence to consent. Since such a dual consent procedure is fundamentally different from a procedure of parental permission and child assent, and would imply a considerable shift regarding some current legislations, practical implications are elaborated. (shrink)

Concepts for sustainable bioeconomy systems are gradually replacing the ones on linear product chains. The reason is that continuously expanding linear chain activities are considered to contribute to climate change, reduced biodiversity, over-exploitation of resources, food insecurity, and the double burden of disease. Are sustainable bioeconomy systems a guarantee for a healthy planet? If yes, why, when, and how? In literature, different sustainability indicators have been presented to shed light on this complicated question. Due to high degrees of complexity and (...) interactions of actors in bioeconomy systems, trade-offs and non-linear outcomes became apparent. This fueled the debates about the normative dimensions of the bioeconomy. In particular, the behavior of actors and the utilization of products do not seem to be harmonized according to the environmental, social, and economic pillars of sustainability. Potential conflicts require a new conceptual framework that is here introduced. It consists of a ‘sustainability’ cylinder captured between an inner-cylinder, representing order, and an outer-cylinder for chaos, based on the laws of physics and complex adaptive systems. Such a framework permits (bioeconomy) systems to propagate in the sustainability zone only if they follow helical pathways serving as the new norms. Helices are a combination of two sinusoidal patterns. The first represents here the sustainable behavior of interacting actors and the second the balanced usage of resources and products. The latter counteracts current growth discourses. The applicability of the conceptual cylinder framework is positively verified via 9 cases in Europe, which encompass social-organizational and product-technological innovations. –. (shrink)

The “best interests of the patient” standard—a complex balance between the principles of beneficence and autonomy—is the driving force of ethical clinical care. Clinicians’ fear of litigation is a challenge to that ethical paradigm. But is it ever ethically appropriate for clinicians to undertake a procedure with the primary goal of protecting themselves from potential legal action? Complicating that question is the fact that tort liability is adjudicated based on what most clinicians are doing, not the scientific basis of whether (...) they should be doing it in the first place. In a court of law, clinicians are generally judged based on the “reasonably prudent” standard: what a reasonably prudent practitioner in a similar situation would do. But this legal standard can have the effect of shifting the medical standard of care—enabling a standard‐of‐care sprawl where actions undertaken for the primary purpose of avoiding liability reset the standard of care against which clinicians will be adjudicated. While this problem has been recognized in the legal literature, neither current ethical models of care nor legal theory offer workable solutions.One of the best examples of the conflict between evidence‐based medicine and common clinical practice is the use of electronic fetal monitoring. Despite strong evidence and professional guidelines that argue against the use of EFM for healthy pregnancies, the practice persists. One of the main reasons for this is often assumed to be physicians’ concerns about liability. (shrink)

*Work on this paper was funded in part by NIH grant K01-AT00054, National Center for Complementary and Alternative Medicine. Know then thyself, presume not God to scan The proper study of mankind i...

There is growing interest for a communitarian approach to the governance of genomics, and for such governance to be grounded in principles of justice, equity and solidarity. However, there is a near absence of conceptual studies on how communitarian-based principles, or values, may inform, support or guide the governance of genomics research. Given that solidarity is a key principle in Ubuntu, an African communitarian ethic and theory of justice, there is emerging interest about the extent to which Ubuntu could offer (...) guidance for the governance of genomics research in Africa. To this effect, we undertook a conceptual analysis of Ubuntu with the goal of identifying principles that could inform equity-oriented governance of genomics research. Solidarity, reciprocity, open sharing, accountability, mutual trust, deliberative decision-making and inclusivity were identified as core principles that speak directly to the different macro-level ethical issues in genomics research in Africa such as: the exploitation of study populations and African researchers, equitable access and use of genomics data, benefit sharing, the possibility of genomics to widen global health inequities and the fair distribution of resources such as intellectual property and patents. We use the identified the principles to develop ethical guidance for genomics governance in Africa. (shrink)

Since the introduction of the U.S. Sarbanes-Oxley Act in 2002 and several other national corporate governance codes, whistleblowing policies have been implemented in a growing number of companies. Existing research indicates that this type of governance codes has a limited direct effect on ethical or whistleblowing behaviour whereas whistleblowing policies at the corporate level seem to be more effective. Therefore, evidence on the impact of (inter)national corporate governance codes on the content of corporate whistleblowing policies is important to understand their (...) indirect impact on whistleblowing behaviour. This study analyzes the contents of whistleblowing policies, and parts of corporate codes of conduct and codes of ethics, describing such policies of 56 leading European companies. By classifying the contents in seven categories, an exploratory framework was created. General contents often identified were: applicability to all employees, a group-wide scope and an authoritative tone. The most common general violations to report were breaches of internal policies and external regulations or laws. The more specific violations most frequently mentioned were criminal offences and dangers to health and safety or the environment. Contacts to report to were the direct or indirect supervisors, a compliance officer or a confidential "hotline" facility. A confidentiality guarantee was common and anonymous reporting was often possible, though sometimes discouraged. Protection against retaliation is stated by ensuring that retaliation will not happen, prohibiting it or making it punishable. The requirement of good faith was frequently given. Finally, investigation of the report was often guaranteed. Surprisingly little information is given on the treatment of whistleblowers reporting an unfounded complaint in good faith, or reporting a violation they were involved in. The study's findings are most relevant to companies without a whistleblowing policy or those that intend to benchmark their policies, and to pan-European standard setters. (shrink)

As one of the most compelling technologies for imaging the brain, functional MRI (fMRI) produces measurements and persuasive pictures of research subjects making cognitive judgments and even reasoning through difficult moral decisions. Even after centuries of studying the link between brain and behavior, this capability presents a number of novel significant questions. For example, what are the implications of biologizing human experience? How might neuroimaging disrupt the mysteries of human nature, spirituality, and personal identity? Rather than waiting for an ethical (...) agenda to emerge from some unpredictable combination of the concerns of ethicists and researchers, the attention of journalists, or after controversy is sparked by research that cannot be retracted, we queried key figures in bioethics and the humanities, neuroscience, media, industry, and patient advocacy in focus groups and interviews. We identified specific ethical, legal and social issues (ELSI) that highlight researcher obligations and the nonclinical impact of the technology at this new frontier. (shrink)

ABSTRACT Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics (...) committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants’ needs and contextual realities: (1) de-emphasising the role of experts and institutions in the consenting process, (2) clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and (3) more effective support for research participants during and after the study. (shrink)

This study examined the ethical issues experienced by nurses working in a small group of elderly persons’ care settings in the UK, using a survey questionnaire previously used in other countries for examining the cultural aspects of ethical issues. However ‘culture’ relates not only to ethnicity but also the organizational culture in which care is delivered. Nurses working in elderly persons’ care settings described a range of issues faced when caring for elderly terminally ill people, which illustrated the different needs (...) of patients, relatives, professionals and society. These issues related to the unique needs of elderly people (such as dementia sufferers) and could have an impact on patients’ quality of death. (shrink)

ABSTRACTIn the present study, we refer to Carr's theory on the nature of educational practice for evaluating teaching as a praxis in relation to two major changes, i.e. ubiquitous learning and massive communication caused by MOOCs. With regard to the first change, we argue that the teacher is faced with the problem of encouraging the learners to get involved in the educational activities. The second change has resulted in a reduction of teacher’s agency and loss of teaching legitimacy and hence (...) its natural feature as a morally committed action. In addition, massive communication has affected the potential encounters between teacher and student considered as the ‘Other’ and has replaced conversation with texting. We highlight the significance of teacher-student conversation as an essential element for developing reflection and self-reflection capacities. Finally, we discuss that the responsibility of teaching is beyond designing and implementing education technically through MOOCs. (shrink)

Positioning technologies, such as GPS are widespread in society but are used only sparingly in behavioural science research, e.g., because processing positioning technology data can be cumbersome. The current work attempts to unlock positioning technology potential for behavioural science studies by developing and testing a research tool to analyse GPS tracks. This tool—psyosphere—is published as open-source software, and aims to extract behaviours from GPSs data that are more germane to behavioural research. Two field experiments were conducted to test application of (...) the research tool. During these experiments, participants played a smuggling game, thereby either smuggling tokens representing illicit material past border guards or not. Results suggested that participants varied widely in variables, such as course and speed variability and distance from team members in response to the presence of border guards. Subsequent analyses showed that some of these GPS-derived behavioural variables could be linked to self-reported mental states, such as fear. Although more work needs to be done, the current study demonstrates that psyosphere may enable researchers to conduct behavioural experiments with positioning technology, outside of a laboratory setting. (shrink)

The use of genome-wide association studies in medical research and the increased ability to share data give a new twist to some of the perennial ethical issues associated with genomic research. GWAS create particular challenges because they produce fine, detailed, genotype information at high resolution, and the results of more focused studies can potentially be used to determine genetic variation for a wide range of conditions and traits. The information from a GWA scan is derived from DNA that is a (...) powerful personal identifier, and can provide information not just on the individual, but also on the individual's relatives, related groups, and populations. Furthermore, it creates large amounts of individual-specific digital information that is easy to share across international borders. This paper provides an overview of some of the key ethical issues around GWAS: consent, feedback of results, privacy, and the governance of research. Many of the questions that lie ahead of us in terms of the next generation sequencing methods will have been foreshadowed by GWAS and the debates around ethical and policy issues that these have created. (shrink)

Clinical ethics support for health care professionals and patients is increasingly seen as part of good health care. However, there is a key drawback to the way CES services are currently offered. They are often performed as isolated and one-off services whose ownership and impact are unclear. This paper describes the development of an integrative approach to CES at the Center of Expertise and Care for Gender Dysphoria at Amsterdam University Medical Center. We specifically aimed to integrate CES into daily (...) work processes at the CEGD. In this paper, we describe the CES services offered there in detail and elaborate on the 16 lessons we learned from the process of developing an integrative approach to CES. These learning points can inform and inspire CES professionals, who wish to bring about greater integration of CES services into clinical practice. (shrink)

This chapter contains sections titled: Types of Knowledge in Technology A Neglected Topic Empirical Studies Philosophical Explorations References and Further Reading.

Clinical ethics support for health care professionals and patients is increasingly seen as part of good health care. However, there is a key drawback to the way CES services are currently offered. They are often performed as isolated and one-off services whose ownership and impact are unclear. This paper describes the development of an integrative approach to CES at the Center of Expertise and Care for Gender Dysphoria at Amsterdam University Medical Center. We specifically aimed to integrate CES into daily (...) work processes at the CEGD. In this paper, we describe the CES services offered there in detail and elaborate on the 16 lessons we learned from the process of developing an integrative approach to CES. These learning points can inform and inspire CES professionals, who wish to bring about greater integration of CES services into clinical practice. (shrink)

In this paper we report findings from a commissioned report to the COVID-19 Clinical Research Coalition on approaches to streamline multinational REC review/approval during public health emergencies. As currently envisioned in the literature, a system of REC mutual recognition is theoretically possible based on shared procedural REC standards, but raises numerous concerns about perceived inequities and mistrust.