The decision of the High Court in Bell v Tavistock has excited considerable discussion about lawful consent for puberty-blocking drug treatment for children with gender dysphoria. The present paper draws attention to a wider question that surfaces through this case: is informed decision-making an adequate practical tool for seeking and obtaining patients’ consent for medical treatment? Informed decision-making engages the premises of the rational choice theory: that people will have well-crystallised health goals; and, if they (...) are provided with sufficient information about medical treatments, then they will be able to choose the treatment that satisfies their goals. Whilst appealing, the informed decision-making paradigm is assailed by various fallacies, which apply not only to children but also to adults. In Bell v Tavistock, the High Court seems to have recognised such fallacies, and it rejected informed decision-making as an adequate tool for consent from children with gender dysphoria. Similar considerations apply to adults in various situations. Thus, Bell v Tavistock can be seen as an attempt to refine the views on the consent that were expressed by the Supreme Court in Montgomery. It can be inferred that the Supreme Court did recognise the limitations of informed decision-making, but it did not develop this point. Further work is required to formulate an adequate model of decision-making, and Bell v Tavistock serves as a useful reminder to rethink informed decision-making as the device for consent. (shrink)

Advance care planning (ACP) is a process that seeks to elicit patients’ goals, values, and preferences for future medical care. While most commonly employed in adult patients, pediatric ACP is becoming a standard of practice for adolescent and young adult patients with potentially life-limiting illnesses. The majority of research has focused on patients and their families; little attention has been paid to the perspectives of healthcare providers (HCPs) regarding their perspectives on the process and its potential benefits and limitations. Focus (...) groups were conducted with 15 physicians as part of a larger study of adolescent and young adult ACP in hematopoietic stem cell transplant (HSCT) patients. This study identified two categories important to the utility of ACP in pediatric HSCT patients; (1) the temporal context of ACP and decision making and (2) the limitations of pediatric ACP, with subcategories identified as (a) embodied and witnessed knowing, (b) the impact of clinical cascades—when the treatment of one organ system creates complications in another system that needs to be treated—and a creation of a “new normal” following complications of illness and its treatment in the pediatric intensive care unit (PICU), (c) the balancing of adolescents’ autonomy with their capacity to make informed medical decisions, and (d) the epistemological frames that differ between HCP and patients and their families. These findings support ACP in adolescent and young adult HSCT patients, with a number of implications for practice as this process becomes more common. (shrink)

Transgender and gender expansive (TGE) youth often seek a variety of gender-affirming healthcare services, including pubertal suppression and hormone therapy requiring that TGE youth and their parents participate in informed consent and decision making. While youth must demonstrate the ability to understand and appreciate treatment options, risks, benefits, and alternatives as well as make and express a treatment choice, standardized approaches to assess the capacity of TGE youth to consent or assent in clinical practice are not routinely used. (...) This scoping review identified the currently available data regarding adolescent capacity to consent to gender-affirming medical treatments. Articles relevant to assessing adolescent capacity for clinical decision-making were identified using OVID Medline, Web of Science, and PubMed. Articles were reviewed and thematically analyzed. Eight relevant articles were identified using three tools for measuring adolescent clinical decision-making capacity: Measure of Understanding, Measure of Competence, and MacArthur Competence Assessment Tool (MacCAT). These studies explored hypothetical treatment decisions, mental health treatment decisions, HIV treatment decisions, genetic testing decisions, and gender-affirming medical decisions. Only one study specifically examines the capacity of TGE youth to consent to medical treatments. Age was correlated with capacity in most, but not all studies. Other studies found cognitive measures (IQ, literacy, numeracy) may impact important aspects of capacity (understanding and reasoning). For clinicians caring for TGE youth, tools such as the MacArthur Competence Assessment Tool for Treatment (MacCAT-T) may prove useful, in conjunction with consideration of youth developmental abilities and utilization of shared decision-making practices. A standardized, collaborative approach to assessing TGE youth capacity would benefit TGE youth and their parents, and allow clinicians to more easily resolve ethical concerns. (shrink)

Complementary and alternative medicine is used by many in hopes of achieving important health-related goals. Survey data indicate that 42 percent of the U.S. population uses CAM, accounting for 629 million “office” visits a year and expenditures of 27 billion dollars. This high prevalence of use calls for a careful evaluation of CAM so as to ensure the well-being of those using its modalities. Such an evaluation would obviously include assessments of the safety and efficacy of particular approaches, the training (...) and integrity of practitioners, and the appropriateness of modalities for different conditions or uses. Given the lack of published data concerning many of these aspects of CAM, the likely unfamiliarity of its practitioners to the approaches available to clinicians practicing modern scientific medcine, and the need to respect the unique preferences of persons seeking assistance with achieving health-related goals, it is also important to assess the potential roles of informed consent for the use of CAM. Examining such roles is the central task of this paper. (shrink)

How can free and equal people cooperate to solve conflicts and common problems in a rational and legitimate way? In this article I deduce principles for doing so from the requirements of rational communication set out in the discourse theory of Jürgen Habermas. I apply them in defining a process of efficient decision making. What I call ‘communicative design’ denotes the design of a reason giving process in which the practice of proposing and assessing claims with regard to (...) rulemaking and problem solving is undertaken on an equal and autonomous basis. Two sets of prescriptions are given: organisational principles for the composition of groups and argumentative principles for deliberation. However, any procedure aimed at achieving a rational consensus in decision making in organisations has to deal in practice with limitations of time, participation and the information available. Communicative design may not guarantee strictly rational decisions, then, but the procedure it constructs does promise relatively ‘more valid’ decisions than might be expected if another procedure had been adopted. (shrink)

This article explores the hypothesis that third parties are motivated to seek information about agents who have behaved unethically in the past, even if the agent and available information are irrelevant to the third parties’ goals and interests. We explored two possible motives for this information seeking behavior: deonance, or the motive to care about ethics and justice simply for the sake of ethics and justice, and distrust-based threat monitoring. Participants in a consumer decision task were (...) found to seek out information about an agent who had behaved unethically even when the agent was explicitly excluded from the task; there were no intentions to purchase from the agent; performance expectations for the agent’s product were low; the information that could be sought was non-diagnostic, redundant or irrelevant to an ethical judgment; and alternatives in the market offered as good or better value as the unethical agent. Critically, this information seeking took place even when the observer could disengage from and was not vulnerable to the agent. The findings are discussed in terms of third party information seeking and its effects on ethical behavior in the marketplace. (shrink)

With the pressing shortage of human organs and recent breakthroughs in gene editing, xenotransplantation—using animal organs, tissues or cells for human transplants—offers new hope for patients on wait lists. The use of genome editing technologies to produce xenotransplants from pigs with reduced immunogenicity has recently brought renewed attention to the field while also raising a host of ethical dilemmas. These concerns include animal welfare, the risks of zoonotic diseases, the moral implications of crossing species boundaries and the potential inequities in (...) access to such treatments. In their article ‘Who shall go first? A multicriteria approach to patient selection for first clinical trials of cardiac xenotransplantation’,1 Kögel and colleagues propose an ethical framework for selecting patients in cardiac xenotransplantation trials. They argue that while significant advances have been made with xenotransplants in brain-dead humans, limited knowledge can be gained from procedures performed outside clinical trials. According to them, knowledge production should be prioritised, and terminally ill patients who are unlikely to survive would not contribute meaningfully to scientific understanding or benefit from the procedure. At the core of xenotransplantation ethics …. (shrink)

The purpose of this study is to identify the requirements of computerized Management Information Systems and their role in improving the quality of administrative decisions in the Palestinian Ministry of Education and Higher Education. The authors used the descriptive analytical method and the questionnaire method to collect the data. (247) questionnaires were distributed on the study sample and (175) questionnaires were collected back with a recovery rate of (70.8). The study showed a number of results, the most important of (...) which are: There exist a role for computerized management information system requirements in improving the quality of administrative decisions in the Ministry of Education and Higher Education. This result is due to the existence of the support and attention by the senior management in the Ministry of Education and Higher Education by 65.06%, the physical requirements available for the use of computerized Management Information Systems are available by (72.19%), and the software requirements for the use of computerized Management Information Systems are available at 67.74%. The results found that the human requirements available for the use of computerized Management Information Systems are available at (68.33%). The results showed that the organizational requirements that assist in the use of information systems are available at (64.19%). There are no statistically significant differences between respondents' responses to the role of computerized management information system requirements in improving the quality of administrative decisions in the Ministry of Education and Higher Education attributable to the variables(Gender, academic qualification, age, career level), while there are statistically significant differences in the role of computerized management information system requirements in improving the quality of administrative decisions in the Ministry of Education and Higher Education due to variable years of service. The study concluded that the Ministry of Education and Higher Education is able to cope with the external environmental changes rapidly and the limited time available for the collection and analysis of information. This means that administrative information systems should be used by increasing the approval of senior management on Management Information Systems in making their decisions, and to involve the employees in making any change and keep abreast of technical developments and try to use external bodies to advise in the field of computerized information systems, and work to increase coordination between the different departments of the ministry. (shrink)

Examples of patients with anorexia nervosa, depression or borderline personality disorder who have decision-making capacity as currently operationalized, but refuse treatment, are discussed. It appears counterintuitive to respect their treatment refusal because their wish seems to be fuelled by their illness and the consequences of their refusal of treatment are severe. Some proposed solutions have focused on broadening the criteria for decision-making capacity, either in general or for specific patient groups, but these adjustments might discriminate against (...) particular groups of patients and render the process less transparent. Other solutions focus on preferences expressed when patients are not ill, but this information is often not available. The reason for such difficulties with assessing decision-making capacity is that the underlying psychological processes of normal decision-making are not well known and one cannot differentiate between unwise decisions caused by an illness or other factors. The proposed alternative, set out in this paper, is to allow compulsory treatment of patients with decision-making capacity in cases of an emergency, if the refusal is potentially life threatening, but only for a time-limited period. The argument is also made for investigating hindsight agreement, in particular after compulsory measures. -/- . (shrink)

Philosophers have long recognized that the unique values of the individual physician effect medical-ethical decision-making. While not taking issue with this basic assumption, this article critically examines one discussion of how different philosophies (existential, utilitarian, and value realist) can influence a neurosurgeon's decision to operate upon a person having a malignant brain tumor. It also delineates and discusses a fund of ‘medical wisdom’ commonly available to any neurosurgeon and easily obtainable by both researcher and patient. The article (...) suggests that those in the humanities interested in studying the ethical decision-making process in a medical subspecialty become familiar with this fund of knowledge. It can provide a base for evaluating when and how individual medical decisions vary. In this specific instance, the medical knowledge base was used to direct attention to when and how ethical issues are identified and resolved within the staff clinical neurosurgical setting. An informal survey among resident and staff neurosurgeons supported the conclusion that philosophical analyses of medical-ethical decision-making are appreciated when case examples are carefully and accurately documented, when medical terminology is used correctly and when recognition of the practical limits placed on medical decision-making is given. CiteULike Connotea Del.icio.us What's this? (shrink)

ObjectiveTo increase knowledge of how doctors perceive futile treatments and scarcity of resources at the end of life. In particular, their perceptions about whether and how resource limitations influence end-of-life decision making. This study builds on previous work that found some doctors include resource limitations in their understanding of the concept of futility.SettingThree tertiary hospitals in metropolitan Brisbane, Australia.DesignQualitative study using in-depth, semistructured, face-to-face interviews. Ninety-six doctors were interviewed in 11 medical specialties. Transcripts of the interviews were analysed (...) using thematic analysis.ResultsDoctors’ perceptions of whether resource limitations were relevant to their practice varied, and doctors were more comfortable with explicit rather than implicit rationing. Several doctors incorporated resource limitations into their definition of futility. For some, availability of resources was one factor of many in assessing futility, secondary to patient considerations, but a few doctors indicated that the concept of futility concealed rationing. Doctors experienced moral distress due to the resource implications of providing futile treatment and the lack of administrative supports for bedside rationing.ConclusionsDoctors’ ability to distinguish between futility and rationing would be enhanced through regulatory support for explicit rationing and strategies to support doctors’ role in rationing at the bedside. Medical policies should address the distinction between resource limitations and futility to promote legitimacy in end-of-life decision making. (shrink)

German legislation demands that decisions about the treatment of mentally incompetent patients require an ‘informed consent’. If this was not given by the patient him-/herself before he/she became incompetent, it has to be sought by the physician from a guardian, who has to be formally legitimized before. Additionally this surrogate has to seek the permission of a Court of Guardianship (Vormundschaftsgericht), if he/she intends to consent to interventions, which pose significant risks to the health or the life of the person (...) under his/her care. This includes ‘end-of-life decisions’. Deviations from this procedure are only allowed in acute emergencies or cases of ‘medical futility’. On the basis of epidemiological and demographical data it can be shown that the vast majority of surrogate decisions on incompetent patients in Germany is not covered by legally valid consent. Moreover, the data suggests that if consent were to be requested according to the legal regulations, both the legal and medical system could realistically never cope with the practical consequences of this. Additionally, empiric research has revealed serious deficits concerning medical ‘end of life-decisions’ and practical performance in palliative care. As a consequence a multidisciplinary discussion has developed in Germany about the reform of present legislation with respect to key-issues like• the assessment of mental competence• the options for exercising patient self-determination via advance directives and durable powers of attorney• the improvement of palliative care facilities,• the clarification of formal procedures for surrogate decision-making in health care and towards the end of life• and the possibilities and their limitations of controlling these decision-making processes ‘externally’ (e.g., by Guardianship Courts or committees).The authors discuss those proposals, which clearly dominate the present debate: They all aim to comply with the scientific basis of German law, jurisdiction and the European traditions of philosophy of health care and bioethics. (shrink)

Making decisions can be hard, but it can also be facilitated. Simple heuristics are fast and frugal but nevertheless fairly accurate decision rules that people can use to compensate for their limitations in computational capacity, time, and knowledge when they make decisions [Gigerenzer, G., Todd, P. M., & the ABC Research Group (1999). Simple Heuristics That Make Us Smart. New York: Oxford University Press.]. These heuristics are effective to the extent that they can exploit the structure of (...) class='Hi'>information in the environment in which they operate. Specifically, they require knowledge about the predictive value of probabilistic cues. However, it is often difficult to keep track of all the available cues in the environment and how they relate to any relevant criterion. This problem becomes even more critical if compound cues are considered. We submit that knowledge about the causal structure of the environment helps decision makers focus on a manageable subset of cues, thus effectively reducing the potential computational complexity inherent in even relatively simple decision-making tasks. We review experimental evidence that tested this hypothesis and report the results of a simulation study. We conclude that causal knowledge can act as a meta-cue for identifying highly valid cues, either individual or compound, and helps in the estimation of their validities. (shrink)

Research is a global enterprise requiring participation of both genders for generalizable knowledge; advancement of science and evidence based medical treatment. Participation of women in research is necessary to reduce the current bias that most empirical evidence is obtained from studies with men to inform health care and related policy interventions. Various factors are assumed to limit autonomy amongst the Yoruba women of western Nigeria. This paper seeks to explore the experience and understanding of autonomy by the Yoruba women in (...) relation to research participation. Focus is on factors that affect women's autonomous decision making in research participation. An exploratory qualitative approach comprising four focus group discussions, 42 in-depth interviews and 14 key informant interviews was used. The study permits a significant amount of triangulation, as opinions of husbands and religious leaders are also explored. Interviews and discussions were audiotaped and transcribed verbatim. Content analysis was employed for data analysis. Findings show that concepts of autonomy varied amongst the Yoruba women. Patriarchy, religion and culture are conceived to have negative impact on the autonomy of women in respect to research participation. Among the important findings are: 1) male dominance is strongly emphasized by religious leaders who should teach equality, 2) while men feel that by making decisions for women, they are protecting them, the women on the other hand see this protection as a way of limiting their autonomy. We recommend further studies to develop culturally appropriate and workable recruitment methods to increase women's participation in research. (shrink)

Information on the factors influencing parents’ decision-making process following a lethal, life-limiting or severely debilitating prenatal diagnosis remains deficient. A comprehensive systematic review and meta-synthesis was conducted to explore the influencing factors for parents considering termination or continuation of pregnancy following identification of lethal, life-limiting or severely debilitating fetal abnormalities. Electronic searches of 13 databases were conducted. These searches were supplemented by hand-searching Google Scholar and bibliographies and citation tracing. Thomas and Harden’s thematic synthesis method was used (...) to synthesise data from identified studies. Twenty-four papers were identified and reviewed, but two papers were removed following quality assessment. Three main themes were identified through systematic synthesis. Theme 1, entitled ‘all life is precious’, described parents’ perception of the importance of the fetus’ life, a fatalistic view of their situation alongside moral implications as well as the implications decisions would have on their own life, in consideration of previous life experiences. Theme 2 contained two sub-themes which considered the parent’s own imagined future and the influence of other people’s experiences. Finally, Theme 3 presented three sub-themes which may influence their parental decision-making: These described parental consideration of the quality of life for their unborn child, the possibility of waiting to try for another pregnancy, and their own responsibilities and commitments. The first review to fully explore parental decision-making process following lethal, life-limiting, or severely debilitating prenatal diagnosis provided novel findings and insight into which factors influenced parents’ decision-making process. This comprehensive and systematic review provides greater understanding of the factors influential on decision-making, such as hope, morality and potential implications on their own and other’s quality of life, will enable professionals to facilitate supported decision-making, including greater knowledge of the variables likely to influence parental choices. (shrink)

The best interests principle is commonly utilized in acute care settings to assist with decision making about life-saving and life-sustaining treatment. This ethical principle demands that the decision maker refers to some conception of quality of life that is relevant to the individual patient. The aim of this article is to describe the factors that are required to be incorporated into an account of quality of life that will provide a morally justifiable basis for making a (...) judgement about the future quality of life, and therefore the best interests, of critically ill patients who are mentally incompetent. This account consists of three major components - pain and suffering, body functioning, and autonomy - and is applicable in situations where very limited information is available to guide decision making. This framework helps to make decisions about the provision of life-saving treatment that are as consistent as possible in all patient situations. (shrink)

Information technology, that assortment of technology that enables the conversion of data into information, has had an enormous impact on the field of public administration and its theoretical foundation. This article explores five of them. It begins with a discussion of one of the primary impacts of information technology on public administration theory: the development of systems theory and its descendants including the study of complex systems, chaos, and complexity theory. The importance of information technology in (...) decision-making is explored next. Does information technology free us from the limits of bounded rationality or are we simply overwhelmed by the volume of information available via new sources, such as the Internet and the World Wide Web? The third role examined is the use of information technology as a research tool to make previously intractable problems solvable. Computer capability has enormously advanced the theoretical underpinnings of public administration. Fourth, the significance of information technology as a change agent that calls for revision of other theoretical postulates is investigated. As information technology has diffused into public organizations, how has it called into question what we previously thought about the foundation of bureaucracy? Finally, learning by doing and the manner through which practice informs theory is considered. (shrink)

This article is about the information relevant to decision-making capacity in refusal of life-prolonging medical treatment cases. We examine the degree to which the phenomenology of the options available to the agent—what the relevant states of affairs will feel like for them—forms part of the capacity-relevant information in the law of England and Wales, and how this informational basis varies across adolescent and adult medical treatment cases. We identify an important doctrinal phenomenon. In the leading authorities, (...) the courts appear to count the first-personal phenomenology of the available options among the information that adolescents seeking to refuse life-prolonging treatment must understand and appreciate in order to possess capacity; adults are not held to this (higher) standard. We evaluate this differential treatment in light of philosophical work on transformative choice—decisions involving options whose sensory character, and effect on our values and preferences, are grasped only through experience itself. (shrink)

Shifting laws and regulations increasingly displace the centrality of women's health concerns in the provision of abortion services. This is exemplified by the growing presence of deceptive Crisis Pregnancy Centers alongside new informed consent laws designed to dissuade women from seeking abortions. Litigation on informed consent is further complicated in the clinical context due to the increased mobilization of facts – such as the gestational age or sonogram of the fetus – delivered with the intent to dissuade women from accessing (...) abortion. In other words, factual information utilized for ideological purpose. To preserve a woman's autonomy and decision-making capacity, there must be a concerted effort on the part of legislators and courts to place a woman's health at the center of abortion law and policy. (shrink)

The increasing success of the evidence-based policy movement is raising the demand of empirically informed decision making. As arguably any policy decision happens under conditions of uncertainty, following our best available evidence to reduce the uncertainty seems a requirement of good decision making. However, not all the uncertainty faced by decision makers can be resolved by evidence. In this paper, we build on a philosophical analysis of uncertainty to identify the boundaries of scientific advice (...) in policy decision making. We start by introducing a distinction between empirical and non-empirical types of uncertainty, and we explore the role of two non-empirical uncertainties in the context of policy making. We argue that the authority of scientific advisors is limited to empirical uncertainty and cannot extend beyond it. While the appeal of evidence-based policy rests on a view of scientific advice as limited to empirical uncertainty, in practice there is a risk of over reliance on experts beyond the legitimate scope of their authority. We conclude by applying our framework to a real-world case of evidence-based policy, where experts have overstepped their boundaries by ignoring non-empirical types of uncertainty. (shrink)

There is a trend of recruiting faith leaders at mosques to overcome religious barriers to organ donation, and to increase donor registration among Muslims. Commentators have suggested that Muslims are not given enough information about organ donation in religious sermons or lectures delivered at mosques. Corrective actions have been recommended, such as funding campaigns to promote organ donation, and increasing the availability of organ donation information at mosques. These actions are recommended despite published literature expressing safety concerns (...) (i.e., do no harm) in living and end-of-life organ donation. Living donors require life-long medical follow-up and treatment for complications that can appear years later. Scientific and medical controversies persist regarding the international guidelines for death determination in end-of-life donation. The medical criteria of death lack validation and can harm donors if surgical procurement is performed without general anesthesia and before biological death. In the moral code of Islam, the prevention of harm holds precedence over beneficence. Moral precepts described in the Quran encourage Muslims to be beneficent, but also to seek knowledge prior to making practical decisions. However, the Quran also contains passages that demand honesty and truthfulness when providing information to those who are seeking knowledge. Currently, information is limited to that which encourages donor registration. Campaigning for organ donation to congregations in mosques should adhere to the moral code of complete, rather than selective, disclosure of information. We recommend as a minimal standard the disclosure of risks, uncertainties, and controversies associated with the organ donation process. (shrink)

The substituted judgement principle is often recommended as a means of promoting the self-determination of an incompetent individual when proxy decision makers are faced with having to make decisions about health care. This article represents a critical ethical analysis of this decision-making principle and describes practical impediments that serve to undermine its fundamental purpose. These impediments predominantly stem from the informality associated with the application of the substituted judgement principle. It is recommended that the principles upon which (...) decisions are made about health care for another person should be transparent to all those involved in the process. Furthermore, the substituted judgement principle requires greater rigour in its practical application than currently tends to be the case. It may be that this principle should be subsumed as a component of advance directives in order that it fulfils its aim of serving to respect the self-determination of incompetent individuals. (shrink)

In this paper I argue that the rationality of law and legal decision making would be enhanced by a systematic attempt to recognize and respond to the implications of empirical uncertainty for policy making and decision making. Admission of uncertainty about the accuracy of facts and the validity of assumptions relied on to make inferences of fact is commonly avoided in law because it raises the spectre of paralysis of the capacity to decide issues authoritatively. (...) The roots of this short-sighted view are found in primitive mechanical models of relationships in the empirical and social world – those of objective causality and determinism. Insofar as it is believed that if we had sufficient data a clear and unequivocal answer would be available to each question, admission of uncertainty is seen as a sign of insufficiency, incompetence, impotence, and is avoided whenever a decision that must be seen to be based on valid reasons, cannot be avoided. Avoidance of some decisions, duplicity in others, is the result. -/- Decision-making must be restructured to recognize the provisional and context-bound validity and relevance of the models we use to conceptualize and order our understanding of phenomena, and to utilize this awareness as an instrument in the production of legal policies and decisions that will be authoritative precisely because they are honestly accurate and socially responsible. The paper makes a start on such a re-structuring of the legal process by exploring the implications of the observation that if law is to be “just”: 1) legal policy must be based on accurate information and rationally related to social goals; and 2) decisions applying policy to individual fact situations must be based on assumptions that are both relevant and accurate. -/- Reasons for determinations of fact must be given, otherwise the presumption that the trier of fact is “reasonable” is an unconditional licence to use private modes of logic and theories of social and natural science. What is not disclosed cannot be challenged on grounds of invalidity or irrelevance. Use of “objective validity” as a standard to evaluate conclusions made by the trier of fact in contentious cases would only serve to beg all important questions by concealing: 1) fundamental normative conflict, and 2) the limited nature and applicability of many validity claims. -/- Our use of the phrases “undue risk,” “public interest,” “reasonable,” and “necessary,” reflects the weight we choose to give conflicting social values and goals when we must make decisions in relative ignorance of all the consequences. “Objective criteria” are of limited utility in legal decision-making because their social meaning is derivative. Policy generation in the absence of any coherent conceptual-normative framework, use of vague terminology in legislation stating policy, and the absence of rational means to distinguish between individual cases to which decision-makers are required by law to apply policy, make it inevitable that many legal “decisions” made in the guise of determinations of objective fact, are charades, an arbitrary, capricious, intuitive, subjective (and thus private) use of public decision-making power. -/- Law must alter its aspirations and recognize that rational decision-making is a process that can occur only within parameters set by present knowledge and societal preference structures. Only by working with the constraints imposed by these parameters is it possible to achieve “just” decisions. Where no rational basis for differentiating cases exists, “individualized justice” must be avoided and public policy articulated in law applied uniformly to all cases in a class. The terms “reasonable” and “necessary,” used to describe policy and its consequences for specific cases, must be understood to represent provisional societal assessments, attempts to implement societal preference structures in the face of limited knowledge. Heightened awareness of the limited nature of our knowledge can only result in legal policies that have a more explicit normative basis. (shrink)

As more young people feel safe to outwardly identify as transgender or gender expansive (TGE), meaning that their gender identity does not align with the sex they were assigned at birth, an increasing number of youth who identify as TGE seek gender-affirming medical care (GAMC). GAMC raises a number of ethical questions, such as the capacity of a minor to assent or consent, the role of parents or legal guardians in decisions about treatment, and implications for equitable access to care (...) when differing parental or custodial viewpoints are present. These questions are further complicated by the difficulties in explaining the limits of long-term research in GAMC, with regard to the preservation of fertility, for example. We present two de-identified composite case studies to highlight dilemmas that may arise and offer recommendations to better support patient- and family-centered decision making for GAMC. These include employing a multidisciplinUniverary shared decision-making approach, disentangling informed consent and assent from chronological age, developing a consistent approach to the assessment of decisional capacity, and developing age-appropriate informational materials. (shrink)

Background: Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study. Methods: The study used a rapid assessment incorporating multiple qualitative methods (...) including in depth interviews, focus group discussions and observations of consent processes. Differences between verbal information provided during community engagement processes, and consent processes during the enrolment of cases and controls were identified, as well as the factors influencing the tailoring of such information. Results: MalariaGEN participants and field staff seeking consent were generally satisfied with their understanding of the project and were familiar with aspects of the study relating to malaria. Some genetic aspects of the study were also well understood. Participants and staff seeking consent were less aware of the methodologies employed during genomic research and their implications, such as the breadth of data generated and the potential for future secondary research.Moreover, trust in and previous experience with the Navrongo Health Research Centre which was conducting the research influenced beliefs about the benefits of participating in the MalariaGEN study and subsequent decision-making about research participation. Conclusions: It is important to recognise that some aspects of complex genomic research may be of less interest to and less well understood by research participants and that such gaps in understanding may not be entirely addressed by best practice in the design and conduct of consent processes. In such circumstances consideration needs to be given to additional protections for participants that may need to be implemented in such research, and how best to provide such protections.Capacity building for research ethics committees with limited familiarity with genetic and genomic research, and appropriate engagement with communities to elicit opinions of the ethical issues arising and acceptability of downstream uses of genome wide association data are likely to be important. (shrink)

Research funders, regulatory agencies, and journals are increasingly expecting that individual-level data from health research will be shared. Broad consent to such sharing is considered appropriate, feasible and acceptable in low- and middle-income settings, but to date limited empirical research has been conducted to inform the design of such processes. We examined stakeholder perspectives about how best to seek broad consent to sharing data from the Mahidol Oxford Tropical Medicine Research Unit, which implemented a data sharing policy and broad (...) consent to data sharing in January 2016. Between February and August 2017 qualitative data were collected at two sites, Bangkok and the Thai-Myanmar border town of Mae Sot. We conducted eighteen semi-structured interviews. We also conducted four focus group discussions with a total of nineteen people. Descriptive and thematic coding informed analysis of aspects of data sharing that are considered most important to inform participants about, and the best ways to explain complex and abstract topics relating to data sharing. The findings demonstrated that clinical trial participants prioritise information about the potential benefits and harms of data sharing. Stakeholders made multiple suggestions for clarifying information provided about data sharing on such topics. There was significant variation amongst stakeholders’ perspectives about how much information should be provided about data sharing, and it was clear that effective information provision should be responsive to the study, the study population, the individual research participant and the research context. Effectively communicating about data sharing with research participants is challenging in practice, highlighting the importance of robust and effective data sharing governance in this context. Broad consent should incorporate effective and efficient explanations of data sharing to promote informed decision-making, without impeding research participants’ understandings of key aspects of the research from which data will be shared. Further work is required to refine both the development of core information about data sharing to be provided to all research participants, and appropriate solutions for context specific-challenges arising when explaining data sharing. (shrink)

Tough Decisions presents many of the complex medical-ethical issues likely to confront practitioners in critical situations. Through fictional but true-to-life cases, vividly described in clinical terms, the authors force the reader to choose among different courses of action and to confront a range of possible consequences. A two-year-old has been diagnosed with a malignant brain tumor. Who should be allowed to make decisions about the child's surgery and subsequent therapy, and on what basis? A family history of Huntington's disease emerges (...) when a fiancee seeks genetic counseling. Who should be informed? An elderly patient suffers a cardiac arrest. Should "do-not-resuscitate" orders always be followed? How should legal liability affect medical decisions? Other ethical issues considered include surgical complications, patient autonomy, rights of the retarded, informed consent, euthanasia, and the fair allocation of finite resources. Each case presented conveys the drama and pressure of weighing alternatives, and the realistic consequences of the choices made. The authors show that ethical decision-making is not limited to "matters of life and death", and that it is not the decision but the ethical process by which it is made that gives the decision moral integrity. With realistic detail, Tough Decisions brings to life and makes the student share in the many complexities of ethical decision-making when the health and lives of patients are at stake. (shrink)

ABSTRACTThis paper examines how decisions to limit treatment to critically ill patients under uncertainty can be made rationally. Expected utility theory offers one way of making rational decisions under uncertainty. One problem with using this approach is that we may not know the value of each option. One rational course open is to treat until further information becomes available. However, treatment can limit the range of options open. With treatment, a patient may recover such that he no longer (...) requires life‐supporting treatment. However, his life may be not worth living. If active euthanasia of %on‐terminal’conditions is prohibited, the option of dying will no longer be available. Taking a rational‘wait and see’course may result in being trapped within an unbearable life. On the other hand, sometimes present practice‘lets nature takes its course'. Critically ill patients are allowed to die because it is believed that their lives will be not worth living. It is likely that some patients are allowed to die when there is some objective chance of worthwhile future life. This paper argues that a policy of treating critically ill patients until the nature of future options can be better evaluated, in company with an offer of subsequent euthanasia where appropriate, allows a more rational and humane approach to treatment limitation decisions under uncertainty. (shrink)

Therapeutic privilege is a defence that may be available to doctors who fail to disclose to the patient relevant information when seeking informed consent for treatment if they have a reasonable belief that providing that information would likely cause the patient concerned serious physical or mental harm. In a landmark judgement, the Singapore Court of Appeal introduced a novel interpretation of TP, identifying circumstances in which it might be used with patients who did not strictly lack capacity but (...) might be inclined to refuse recommended treatments. In this paper, we explore the conceptual and practical challenges of this novel interpretation of TP. We propose that more emphasis should be placed on forms of shared and supported decision-making that foster the autonomy of patients with compromised mental capacity while being mindful of the need to safeguard their well-being. The kind of privilege that doctors might need to invoke is one of time and supportive expertise to ensure a flexible, responsive approach calibrated to the individual patients’ needs. The provision of such service would extinguish the need for the novel TP proposed by the Singapore Court of Appeal. (shrink)

Traditionally clinicians have determined their patients' resuscitation status without consultation. This has been condemned as morally indefensible in cases where not for resuscitation (NFR) orders are based on quality of life considerations and when the patient's true wishes are not known. Such instances would encompass most resuscitation decisions in elderly patients. Having previously involved patients in CPR decision-making, we chose formally to explore the reasons behind the choices made. Although the patients were not upset, and readily decided at (...) the time of initial consultation, on later analysing the decision-making we found poor understanding of the procedure, poor recall of information given and in some cases evidence of harm. This may be attributed to impaired decision-making capacity of elderly hospitalised patients as previously shown, or to the discomfort precipitated by having to contemplate the apparent immediacy of cardiac arrest by these patients. We propose that subscribing to autonomy as a general principle needs to be balanced against particular cases where distress may be caused by, or result in, diminished competence and limited autonomy. (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)

Background: Nurses require empowerment if they are to make ethical decisions. Ethical empowerment has always been one of the main concerns in nurse training programs. Research aim: The present study was conducted to determine the effect of an ethical empowerment program on critical care nurses’ ethical decision-making. Research design: This is a clinical trial study with two groups and pre and post design. Participants and research context: In this study, 60 nurses working in Intensive Care Unit were selected (...) through random sampling and then divided into a control and an experimental group after filling out the Moral Sensitivity Questionnaire. Both groups completed the questionnaire again immediately and 2 months after the ethical empowerment workshop had been held for the experimental group. The collected data were analyzed in SPSS-16 using descriptive and inferential statistics. Ethical considerations: The goals of the study were explained to the participants and then a written informed consent was received from them. Findings: The results showed no significant differences between the two groups in terms of their ethical sensitivity scores at the beginning of the study; however, immediately and 2 months after the intervention, the mean score increased significantly in the experimental group. Moreover, the scores obtained 2 months after the workshop increased compared to the pre-intervention scores but showed a drop compared to the scores reported immediately after the workshop. Discussion: The ethical empowerment program, given to the critical care nurses in this study, improved their ethical sensitivity in making decisions significantly over time. Despite the extensive methods, available for teaching nursing ethics, the ethical empowerment program, adopted in this study, had long-lasting effects in terms of ameliorating the process of ethical decision-making in clinical situations. Conclusion: The ethical empowerment of nurses requires the adoption and application of proper methods and patterns of complying with nursing ethics. (shrink)

The international community has proposed a comprehensive strategy to prevent congenital abnormalities. And China, with a high incidence of congenital diseases, has implemented measures including prenatal screening and diagnosis to reduce the morbidity of congenital abnormalities. However, ethical challenges arise in the practice of prenatal screening and diagnosis among healthcare professionals. Five focus group discussions were conducted with twenty-four health professionals working in maternal and child health services in Hunan Province, China, to explore the ethical challenges they encountered in prenatal (...) testing decision-making and information disclosure practices, as well as their views on these challenges. Participants were selected through purposive sampling, ensuring maximum demographic diversity. Three main themes were identified: 1) balancing between information disclosure and privacy protection; 2) patient-oriented decision-making and tensions within family-oriented decision-making; 3) the disparity between the limited help clinical ethics committees (CECs) can provide and professionals’ need for CECs. Ethical norms for information disclosure and autonomous decision-making within prenatal screening and diagnostic institutions must be established. Utilizing CECs is crucial to guide professionals in delivering prenatal testing services while simultaneously focusing on targeted improvement of communication skills among these professionals. (shrink)

Management decision-making is a daily task that managers of various levels solve in every organization. Degree of difficulty of this process depends on the scope of authority, responsibility level, manager’s position in organizational hierarchy; on the changes in the environment, unpredictability of which causes emergence of significant amounts of alternatives. For this reason, managers do not rely only on intuition or personal experience (which limited with selective perception, cognitive ability, ability to withstand stress and/or the presence of (...) bias), but use tools (methods) that have stood the test of time and practice; are based at the analysis of a significant amount of primary and secondary information; involve team-building to find the optimal option or to generate ideas. A significant amount of research papers are devoted to such methods, however, the author forms a synergetic approach which contains a detailed analysis of their correlation with the key factors of the competitiveness of enterprise, such as organizational culture and leadership. Existing decision-making practices, problems and style of management at the tourism enterprises are revealed from conducted survey (the first half of 2014) in tourism firms of Dnepropetrovsk and Zaporizhzhia regions of Ukraine, in which 729 tourism managers took part. The most popular decision-making practices in tourism branch were specified, among them are modeling and monitoring of previous results. The study proved the hypothesis of the author concerning strong connection of decision-making management and type of organizational culture. Moreover, 63% of managers were dissatisfied with low attention to organizational culture at their companies. The basis for future research and the synergetic matrix for decision-making management were worked out in the article which give preconditions for further studies and improvements in tourism management of Ukrainian enterprises. (shrink)

Thriving is a psychological state in which individuals experience a sense of vitality and a sense of learning. Thriving come from relational connections with others, and is deeply rooted in social systems. Theoretical literature suggests that thriving occurs in the presence of decision-making discretion, broad information sharing, and a climate of trust. However, no study has investigated these environmental factors empirically. Using a multiple-studies approach, we established valid and reliable scale for each of these environmental factors using (...) experimental vignettes, confirmed the association of decision-making discretion, broad information sharing and climate of trust with thriving, and identified the role of self-determination theory in determining these relationships. Our analysis was based on data collected from 512 Indian management students across five studies. The results indicate significant difference in thriving for high vs. low level for decision-making discretion, broad information sharing and climate of trust. The relationship of these environmental factors with thriving is mainly due to the fulfillment of the need for competence. Competence partially mediates the relationship of decision-making discretion with thriving, and fully mediates the relationship of broad information sharing and climate of trust with thriving. Autonomy, although positively related with the environmental factors, does not lead to thriving. Practical implications, limitations and research avenues are discussed. (shrink)

Purpose The purpose of this paper is to inform or alert readers to the extensive use and ready availability of genetic information that poses varying degrees of social and legal danger. The eugenics movement of the 1920s and the general acceptance of genetic essentialism provide context for considering contemporary examples of the problem. Design/methodology/approach This paper takes an argumentative approach, supporting proposals with ideas from historical and current research literature. Findings The limits of data protection, extensive use of (...) direct-to-consumer genetic testing and use of genetic information in white nationalist circles portend a resurgence of eugenic beliefs from a century ago. Social implications Research-based recommendations may help to avoid extreme consequences by encouraging people to make informed decisions about the use of genetic information. Originality/value The paper counterposes contemporary understanding of genetic testing and data accessibility with the much older ideology of eugenics, leading to concerns about how white nationalists might further their aims with 21st century technology. (shrink)

When attendant to the agency of models and the general context in which they perform, climate models can be seen as instrumental policy tools that may be evaluated in terms of their adequacy for purpose. In contrast, when analysed independently of their real-world usage for informing decision-making, the tendency can be to prioritise their representative role rather than their instrumental role. This paper takes as a case study the development of the UK Climate Projections 2009 in relation to (...) its probabilistic treatment of uncertainties and the implications of this approach for adaptation decision-making. It is considered that the move towards ensemble-based probabilistic climate projections has the benefit of encouraging organisations to reshape their adaptation strategies and decisions towards a risk-based approach, where they are confronted definitively with climate modelling uncertainties and drawn towards a more nuanced understanding of how climate impacts could affect their operations. This is further illustrated through the example of the built environment sector, where it can be seen that the probabilistic approach may be of limited salience for the urban heat island in the absence of a corresponding effort towards a more place-based analysis of climate vulnerabilities. Therefore, further assessment of the adequacy-for-purpose of climate models might also consider the usability of climate projections at the urban scale. (shrink)

A recent qualitative study published in Neuroethics by Schembs and colleagues explores how functional neurodiagnostics of consciousness inform surrogate decision making in cases of disorders of consciousness. In this commentary, we argue that the chosen methodology significantly limits the scope of the potential conclusions and suggest an embedded ethnographic approach of co-presence as an alternative.

BackgroundDeciding whether to resuscitate extremely preterm infants (EPIs) is clinically and ethically problematic. The aim of the study was to understand neonatologists’ clinical–ethical decision-making for resuscitation of EPIs.MethodsWe conducted a qualitative study in Belgium, following a constructivist account of the Grounded Theory. We conducted 20 in-depth, face-to-face, semi-structured interviews with neonatologists. Data analysis followed the qualitative analysis guide of Leuven.ResultsThe main principles guiding participants’ decision-making were EPIs’ best interest and respect for parents’ autonomy. Participants agreed that (...) justice as resource allocation should not be considered in resuscitation decision-making. The main ethical challenge for participants was dealing with the conflict between EPIs’ best interest and respect for parents’ autonomy. This conflict was most prominent when parents and clinicians disagreed about births within the gray zone (24–25 weeks). Participants’ coping strategies included setting limits on extent of EPI care provided and rigidly following established guidelines. However, these strategies were not always feasible or successful. Although rare, these situations often led to long-lasting moral distress.ConclusionsParticipants’ clinical–ethical reasoning for resuscitation of EPIs can be mainly characterized as an attempt to balance EPIs’ best interest and respect for parents’ autonomy. This approach could explain why neonatologists considered conflicts between these principles as their main ethical challenge and why lack of resolution increases the risk of moral distress. Therefore, more research is needed to better understand moral distress in EPI resuscitation decisions.Clinical Trial Registration: The study received ethical approval from the ethics committee of UZ/ku Leuven (S62867). Confidentiality of personal information and anonymity was guaranteed in accordance with the General Data Protection Regulation of 25 May 2018. (shrink)

This study clearly reveals that the benefits ascribed to strategic planning typically are achieved through a variety of means. A formal process that seeks to plan in a comprehensive, linear fashion is likely to be too complicated, politically divisive, expensive and inflexible, and to ignore how decisions are made in a complex, highly decentralised university. While many approaches to planning are used, universities must ensure they provide periodically opportunities for university staff—freed from daily responsibilities—to consider strategic concerns. Accurate and relevant (...) information must be available to all who make and carry out decisions. Planning should be viewed as a learning process rather than a document producing exercise. Extensive communication among university staff and faculty is needed to ensure informed debate and substantial acceptance of decisions—otherwise they are unlikely to be implemented. Perhaps most important is not the process employed but the decision-maker's breadth of perspective and sophistication. No process will overcome lack of competent leadership. The importance of daily decision-making in various councils and committees on issues such as cost containment and budgetary priorities is underestimated in the literature on planning.Critics have doubted whether universities' structures and processes permit them, or their leaders have the resolve, to confront the emerging issues. However, in many respects, the universities' decentralised, multiple decision-making practices may suit them well. They face the same challenging societal changes as other sectors of society. Their staff include some of the most capable individuals in the United States, and in the past they have been highly adaptable during periods of profound social change.Universities do not appear to be less aware of the need to adapt, nor more constrained in adapting to new conditions, than other sectors of society. In fact, university research and scholarship will be highly important in pointing the way for the whole of society to meet this era's challenges. If pessimistic predictions about current trends turn out to be accurate, universities no doubt will adapt at least as well as other kinds of institutions. The travails of business in this environment are daily news! There will be occasional casualties among the universities, as frequently occurs during major social transitions, but institutions that have grown in importance for over 1,000 years, will doubtless emerge from this period perhaps somewhat changed but still performing their historic social functions. (shrink)

Rapid advances in neuroscience may enable us to identify the neural correlates of ordinary decision making. Such knowledge opens up the possibility of acquiring highly accurate information about people’s competence to consent to medical procedures and to participate in medical research. Currently we are unable to determine competence to consent with accuracy and we make a number of unrealistic practical assumptions to deal with our ignorance. Here I argue that if we are able to detect competence to (...) consent and if we are able to develop a reliable neural test of competence to consent, then these assumptions will have to be rejected. I also consider and reject three lines of argument that might be developed by a defender of the status quo in order to protect our current practices regarding judgments of competence in the face of the availability of information about the neural correlates of ordinary human decision making. (shrink)

A discussion of ethical decision-making literature is overdue. In this article, we summarize the current literature of ethical decision-making models used in mental health professions. Of 1,520 articles published between 2001 and 2020 that met initial search criteria, 38 articles were included. We report on the status of empirical evidence for the use of these models along with comparisons, limitations, and considerations. Ethical decision-making models were synthesized into eight core procedural components and presented based (...) on the composition of steps present in each model. This taxonomy provides practitioners, trainers, students, and supervisors relevant information regarding ethical decision-making models. (shrink)

Looks into evaluation of information provision probability from different sources, based on use of linguistic variables. Formation of functions appurtenant for its unclear variables provides for adoption of decisions by the decision maker, in conditions of nonprobabilistic equivocation. The development of market relations in Ukraine increases the independence and responsibility of enterprises in justifying and making management decisions that ensure their effective, competitive activities. As a result of the analysis, it is determined that the condition of economic (...) facilities can be described and determined by the decision-maker, in the presence of the necessary information. The confidence of the decision-maker in the information received is different and the decisions made have a correspondingly different level of information risk. It is important to substantiate the procedure for assessing the numerical extent of information risk in decision-making based on the information obtained in conditions of uncertainty. The use of a linguistic variable in the processing of expert data presented in the form of a matrix of binary relations of values of the membership function, which allowed to move to further processing of knowledge to support decision-making in the management of industrial, commercial, financial and other activities. As a mathematical model for estimating the numerical measure of information risk when making decisions based on the information obtained in conditions of non-stochastic uncertainty, a model has been developed to model natural language uncertainties, which differs from existing ones by formalizing knowledge taking into account uncertainty of input information. Making such a clear decision in a fuzzy environment has appropriate values of effectiveness and risk. The paper proposes all the functions and accessories of indicators of both quantitative nature and qualitative nature to bring their values in the field of definition to one scale. Then the indicator of the effectiveness of decision-making will be a measure of the clarity of the cross-section of fuzzy subsets, which correspond to the introduced indicators of information risk. The condition of economic facilities can be described and determined by the decision-maker, if the necessary information is available. Decision-making on thenumerical measure of information risk must be determined by a set of basic indicators, which can be both quantitative and qualitative in nature. Predictive values of indicators should be determined in conditions of nonstochastic uncertainty. In this case, the indicators of a quantitative nature can be determined by fuzzy triangular numbers, which implement a high level of confidence in the subjective judgments of experts. Indicators of qualitative nature should be presented in linguistic variables. The values of the indicators of qualitative nature that are predicted must be considered for all fuzzy variable terms-sets of linguistic variables introduced into consideration. For any fuzzy variable, the introduction to the consideration of a clear set of values as carriers of the α-level of its membership function allows to reduce to a single interpretation of the predicted values of indicators of quantitative and qualitative nature in terms of non-stochastic uncertainty. (shrink)

Since approval of the EU General Data Protection Regulation (GDPR) in 2016, it has been widely and repeatedly claimed that the GDPR will legally mandate a ‘right to explanation’ of all decisions made by automated or artificially intelligent algorithmic systems. This right to explanation is viewed as an ideal mechanism to enhance the accountability and transparency of automated decision-making. However, there are several reasons to doubt both the legal existence and the feasibility of such a right. In contrast (...) to the right to explanation of specific automated decisions claimed elsewhere, the GDPR only mandates that data subjects receive meaningful, but properly limited, information (Articles 13-15) about the logic involved, as well as the significance and the envisaged consequences of automated decision-making systems, what we term a ‘right to be informed’. Further, the ambiguity and limited scope of the ‘right not to be subject to automated decision-making’ contained in Article 22 (from which the alleged ‘right to explanation’ stems) raises questions over the protection actually afforded to data subjects. These problems show that the GDPR lacks precise language as well as explicit and well-defined rights and safeguards against automated decision-making, and therefore runs the risk of being toothless. We propose a number of legislative and policy steps that, if taken, may improve the transparency and accountability of automated decision-making when the GDPR comes into force in 2018. (shrink)

The study aimed to investigate the impact of behavioral biases on herding for Islamic financial products with the mediation of shariah literacy. An adopted questionnaire from several published studies was used to collect data. The data were collected from 410 respondents and were analyzed with SmartPLS. The results for the direct impact showed that self-attribution, illusion of control, and information availability have a positive and significant impact on herding for Islamic financial products while shariah literacy showed an insignificant (...) impact on herding. The results for mediation showed that previously significant and positive impact turned to insignificant when shariah literacy was introduced as mediating variable between the illusion of control, self-attribution, information availability, and herding. From a theoretical perspective, this study would contribute to the existing body of knowledge of financial decision making from shariah literacy point-out. On the other hand, the findings of this study may be useful for investors to avoid herding in the Islamic financial markets. The authors synthesize the contribution made by behavioral finance studies in extending the knowledge of herding behavior in Islamic financial products with a mediating role of shariah literacy. The key limitation of the study includes data that were collected from three districts of Punjab, Pakistan. (shrink)

Background and PurposeMany critically ill patients in intensive care units (ICUs) are unable to communicate their wishes about goals of care, particularly about the use of life-sustaining treatments. Surrogates and clinicians struggle with medical decisions because of a lack of clarity regarding patients’ preferences, leading to prolonged hospitalizations and increased costs. This project focused on the development and implementation of a tool to facilitate a better communication process by (1) assuring the early identification of a surrogate if indicated on admission (...) and (2) clarifying the decision-making standards that the surrogate was to use when participating in decision making. Before introducing the tool into the admissions routine, the staff were educated about its use and value to the decision-making process.Project and MethodsThe study was to determine if early use of a simple method of identifying a patient’s surrogate and treatment preferences might impact length of stay (LOS) and total hospital charges. A pre- and post-intervention study design was used. Nurses completed the surrogacy information tool for all patients upon admission to the neuroscience ICU. Subjects (total N=203) were critically ill patients who had been on a mechanical ventilator for 96 hours or longer, or in the ICU for seven days or longer. The project included staff education on biomedical ethics, critical communication skills, early identification of families and staff in crisis, and use of a simple tool to document patients’ surrogates and previously expressed care wishes. Data on hospital LOS and hospital charges were collected through a retrospective review of medical records for similar four-month time frames pre- and post-implementation of the assessment tool.ResultsSignificant differences were found between pre- and post-groups in terms of hospital LOS (F=6.39, p=.01) and total hospital charges (F=7.03, p=.009).ConclusionsProject findings indicate that the use of a simple admission assessment tool, supported by staff education about its completion, use, and available resources, can decrease LOS and lower total hospital charges. The reasons for the difference between the pre- and post-intervention groups remain unclear. Further research is needed to evaluate if the quality of communications between patients, their legally authorized representatives, and clinicians—as suggested in the literature—may have played a role in decreasing LOS and total hospital charges. (shrink)

Culture creates the context within which individuals experience life and comprehend moral meaning of illness, suffering and death. The ways the patient, family and the physician communicate and make decisions in the end-of-life care are profoundly influenced by culture. What is considered as right or wrong in the healthcare setting may depend on the socio-cultural context. The present article is intended to delve into the cross-cultural perspectives in ethical decision making in the end-of-life scenario. We attempt to address (...) the dynamics of the roles of patient, family and physician therein across two countries from East and West, namely, India and Germany. In India, where illness is more a shared family affair than an individual incident, a physician is likely to respect the family’s wishes and may withhold the ‹naked truth’ about the diagnosis of a fatal disease to the patient. In Germany, a physician is legally required to inform the patient about the disease. In India, advance directive being virtually non-existent, the family acts as the locus of the decision-making process, taking into account the economic cost of available medical care. In Germany, advance directive is regarded as mandatory and healthcare is covered by insurance. Family and the physician appear to play larger roles in ethical decision making for patients in India than for those in Germany, who place greater emphasis on autonomy of the individual patient. Our study explicates how culture matters in ethical decision-making and why the bioethical discourse is necessary in the concrete realities of the socio-cultural context. To explore the possibility of finding a common ground of morality across different cultures while acknowledging and respecting cultural diversity, thus remains a formidable challenge for the bioethicists. (shrink)

The number of admissions to hospitals of patients without a proxy decision maker is rising. Very often these patients need fairly immediate medical intervention for which informed consent—or informed refusal—is required. Many have recommended that there be a process in place to make these decisions, and that it include a variety of perspectives. People are particularly wary of relying solely on medical staff to make these decisions. The University Hospitals Case Medical Center recruits community members from its Ethics Committee (...) to serve on a subcommittee, the Patients Without Proxies (PWP) Committee, which works with medical staff during the decision-making process for these patients. Generally, the community members go to the bedside to observe patients. This article looks at how those unused to observing hospitalized patients who are sick and/or dying are affected, comparing them to mock jurors in a research study who are exposed to graphic photographs related to a fabricated crime scene. Judgments made by the mock jurors are affected by viewing such images. The personal experience of witnessing unfamiliar and shocking scenes affects their subsequent judgments. While it may be difficult to tease out whether observing patients causes PWP members to be benefited or harmed, they are affected by what they see. If a variety of perspectives is desirable to reduce possible bias or error, this article argues that at least one community member should refrain from seeing the patient in order to add a different and valuable voice to the decision-making process. Members of the subcommittee base their judgments on the various kinds of information available. Sometimes the things they see, hear, or feel may affect them particularly deeply, and affect their judgments as well. In this article I explore the idea that something like this may be happening in a particular kind of clinical ethics case consultation. (shrink)