Abstract:The ethical principle of autonomy requires physicians to respect patient autonomy when present, and to protect the patient who lacks autonomy. Fulfilling this ethical obligation when a patient has a communication impairment presents considerable challenges. Standard methods for evaluating decision-making capacity require a semistructured interview. Some patients with communication impairments are unable to engage in a semistructured interview and are at risk of the wrongful loss of autonomy. In this article, we present a general strategy for assessing decision-making (...) capacity in patients with communication impairments. We derive this strategy by reflecting on a particular case. The strategy involves three steps: (1) determining the reliability of communication, (2) widening the bandwidth of communication, and (3) using compensatory measures of decision-making capacity. We argue that this strategy may be useful for assessing decision-making capacity and preserving autonomy in some patients with communication impairments. (shrink)

To guide treatment decisions for incompetent patients who have no advance directives, health care institutions should look to the preferences of their own communities of patients. That is the best way to ensure that incompetent patients' wishes will be followed.

Community detection is one of the key research directions in complex network studies. We propose a community detection algorithm based on a density peak clustering model and multiple attribute decision-making strategy, TOPSIS. First, the two-dimensional dataset, which is transformed from the network by taking the density and distance as the attributes of nodes, is clustered by using the DBSCAN algorithm, and outliers are determined and taken as the key nodes. Then, the initial community frameworks are formed (...) and expanded by adding the most similar node of the community as its new member. In this process, we use TOPSIS to cohesively integrate four kinds of similarities to calculate an index, and use it as a criterion to select the most similar node. Then, we allocate the nonkey nodes that are not covered in the expanded communities. Finally, some communities are merged to obtain a stable partition in two ways. This paper designs some experiments for the algorithm on some real networks and some synthetic networks, and the proposed method is compared with some popular algorithms. The experimental results testify for the effectiveness and show the accuracy of our algorithm. (shrink)

Background Ensuring individual free and informed decision‐making for research participation is challenging. It is thought that preliminarily informing communities through ‘community sensitization’ procedures may improve individual decision‐making. This study set out to assess the relevance of community sensitization for individual decision‐making in research participation in rural Gambia. Methods This anthropological mixed‐methods study triangulated qualitative methods and quantitative survey methods in the context of an observational study and a clinical trial on malaria carried out by the (...) Medical Research Council Unit Gambia. Results/discussion Although 38.7% of the respondents were present during sensitization sessions, 91.1% of the respondents were inclined to participate in the trial when surveyed after the sensitization and prior to the informed consent process. This difference can be explained by the informal transmission of information within the community after the community sensitization, expectations such as the benefits of participation based on previous research experiences, and the positive reputation of the research institute. Commonly mentioned barriers to participation were blood sampling and the potential disapproval of the household head. Conclusion Community sensitization is effective in providing first‐hand, reliable information to communities as the information is cascaded to those who could not attend the sessions. However, further research is needed to assess how the informal spread of information further shapes people's expectations, how the process engages with existing social relations and hierarchies (e.g. local political power structures; permissions of heads of households) and how this influences or changes individual consent. (shrink)

Environmental journalism has been criticized by various special interest groups and some editors for advocacy and faulted for inaccuracies. Sources, in turn, many from the science communities, have been accused of inaccessibility, and public relations representatiws from both industry and environmental organizations are regularly blamed for unethical behaviors rangingfrom hyperbole to more serious discussion or omission of factual information. This article reports a preliminary study of ethical decision making among members of the Society of Environmental Journalists, identifying ethical motivation (...) diljerences using the Ethical Motivation Scale. The implications of the reported dominant extrinsic guides are discussed in light of a proposed protocol for ethical environmental communication. (shrink)

Introduction Ethical climate in medical contexts is referred to the organizational environment consisting of medical staff interpersonal relationships regarding patient care. This element affects staff behavior in an organization. The investigation and comparison of the effects of the interventions promoting ethical climate are among important nursing challenges that should be considered by researchers. The present study was conducted to compare the effect of nurses’ ethical decision-making skills and interpersonal communication training on their ethical climate. Materials and methods This experimental (...) study was performed on 90 nurses working in the general teaching hospitals of Mashhad, Iran. The sampling process was conducted in two stages. Nurses were divided into three groups: intervention 1 (ethical decision-making skills group), intervention 2 (interpersonal communication skills group) and control group. The intervention was separate 12-h workshops for each of the intervention groups. The ethical climate questionnaire by Victor and Cullen was used to assess the score of ethical climate in the three groups both at the beginning and 4 weeks after the workshop. The data were analyzed in Statistical Package for Social Sciences software (version 16) using descriptive statistics, analysis of variance, Kruskal–Wallis, paired sample t-test, Wilcoxon test, and post hoc Tukey’s test. Ethical considerations were as follows: The study design was approved by the Research Ethics Committee of Mashhad University of Medical Sciences. Informed consent was obtained from all subjects, and they were ensured about the confidentiality terms. Results The mean scores of the ethical climate test at the first stage were obtained as 66.0 ± 5.5, 67.8 ± 6.9, and 67.7 ± 7.2 in the ethical decision-making, interpersonal communication, and control groups, respectively. Accordingly, the three groups were not significantly different in terms of this variable (df = 87, f = 0.70, P = 0.005). However, after the intervention (i.e. second stage), a significant difference was observed among the three groups regarding the mean scores of the ethical climate test In this regard, the calculated mean scores in the ethical decision-making, interpersonal communication, and control groups were 99.3 ± 6.3, 90.4 ± 7.7, and 67.4 ± 7.9, respectively (df = 87, f = 152.00, P < 0.001). Conclusion Training workshops about ethical decision-making skills and interpersonal communication on the ethical professional climate of nurses was effective. Nonetheless, the effect of ethical decision-making skill training was found to be higher than interpersonal communication skill training. Therefore, it is recommended that nursing managers hold training workshops to improve the ethical climate for nurses. (shrink)

Dans cet article, je reviens sur un constat bien connu, mais jamais parfaitement élucidé : Rousseau n’emploie que très exceptionnellement l’expression « intérêt général », à laquelle il préfère celle d’« intérêt commun ». Je m’efforce d’y apporter une explication nouvelle, en partant d’un réexamen du concept même d’« intérêt » dans son œuvre, auquel il faut prêter un sens assez différent de celui auquel la philosophie politique nous a accoutumés : l’intérêt ne saurait être individuel, il ne saurait s’identifier (...) à l’« avantage », il ne saurait faire l’objet d’un « calcul ». À ce titre, il existe une véritable antinomie entre la notion d’intérêt commun chez Rousseau et celle d’intérêt général qui se formalise chez les physiocrates de façon quasi contemporaine. L’intérêt commun est la base de formation démocratique d’une volonté politiquement orientée, qui prend comme telle le nom de « volonté générale », là où l’intérêt général est le langage normatif dans lequel une décision politique non nécessairement démocratique cherche à fonder sa légitimité en raison. (shrink)

The medical decision-making process is currently in flux. Decisions are no longer made entirely at the physician's discretion: patients are becoming more and more involved in the process. There is a great deal of discussion about the ideal of ‘informed consent’, that is that diagnostic and therapeutic decisions should be made based on an interaction between physician and patient. This means that patients are informed about the advantages and disadvantages of a treatment as well as alternatives to the treatment; (...) then, based on this information they can decide whether or not they want to undergo the treatment. However, recent studies show that the realisation of the ideal of ‘shared decision-making’ faces a number of difficulties related to the fact that patients are not provided with complete and accurate information. Using the example of breast cancer screening, this article examines the question of whether, in light of these difficulties, the ideal of informed decision-making is only an illusion or whether concrete steps can be taken towards the realisation of this ideal. (shrink)

In this article, I offer a new interpretation for Rousseau’s surprisingly spare use of the phrase “general interest” in his works. My starting point is the very notion of interest in his political thought. For Rousseau, interest is not a matter of calculation but of experience; properly speaking, once we are in the state of society, there is nothing like an individual interest because all our interests are shared with somebody else. And our political interest (our sensitivity to society’s general (...) disorders) is shared with all our fellow citizens. In this regard, I bring to light a clear antinomy between the “common interest” in Rousseau’s Social Contract and the “general interest” as conceptualized by the physiocrats a few years later. By “common interest” Rousseau means the material basis for the democratic formation of a general will (that is, a political will) among the citizens, whereas by “general interest” physiocrats mean the normative language in which a non-democratic political decision claims its legitimacy by appealing to reason. (shrink)

Theoretical and practical trends of corporate citizenship indicate a deepening partnership between business and community. Following these developments, the article develops a model for the participation of businesses in decision-making processes as part of policy making and social-economic planning in the community. The article focuses on three levels: It examines the benefits and risks of such participation; identifies the typical dimensions of the participation processes; and finally, provides guidelines on how to develop a participation strategy based on (...) the unique conditions of each business and community. (shrink)

In this article, we describe the influence of violations of community standards of fairness on subsequent ethical decision-making and emotions. Across two studies, we manipulated explanations for a common action, and we find that explanations that violate community standards of fairness lead to greater intentions to behave unethically than explanations that are consistent with community standards of fairness. We find that perceptions of justifiability mediate this relationship. We also find that individuals derive significant psychological benefits from (...) engaging in unethical behavior following perceived violations of fairness. (shrink)

The Supreme Court’s decision in New York State Rifle & Pistol Association Inc. v. Bruen undermines the ability of cities and states to regulate firearms safety. Nonetheless, we remain hopeful that firearm violence can decline even after the Bruen decision. Several promising public health approaches have gained broader adoption in recent years. This essay examines the key drivers of community firearm violence and reviews promising strategies to reverse those conditions, including community violence intervention (CVI) programs and (...) place-based and structural interventions. (shrink)

The aim of the paper is to reconsider Habermas’ discourse approach in terms of its usefulness in the realm of public healthcare where, on a microscale, intersubjective communicative situations arise between defined participants, i.e., patients and healthcare providers, patients’ family members, and further eligible contributors to patient-related decision making. A need for more “communicative interaction,” and explicative and practical discourse, is illustrated by two empirical examples of medical decision making which reveal both communicative and discursive deficits. To empower (...) and enable the patient as a rational and autonomous speaker and discourse participant, a Habermasian emancipatory argument and ‘the power of the better argument’ is recalled. The possibility of equal communicative and discursive rights in the light of real inequalities is discussed in the context of a ‘competence gap’ between participants. Further sections focus on the importance of informed consent on the side of the patient and the communicative competences as an important factor of healthcare system. (shrink)

Just as burnout is manifested through changes in behavioural and communication patterns, it is important to examine whether certain aspects of communication can affect student burnout development. Therefore, this study aims to investigate the relationship between communication and academic burnout. To achieve this, the study proposes an integrated model examining the effects of three communication dimensions – support from academic staff, support from colleagues, and participation in decision-making – on four different dimensions of academic burnout, as well as students’ (...) overall burnout. The model is tested using structural equation modelling (SEM) analysis. High coefficients of determination regarding particular burnout dimensions validate the strength of the proposed model. The results show that support from academic staff and support from fellow students significantly and negatively influence academic burnout, and might be instrumental in its reduction. Unexpectedly, participation in decision-making is shown to be positively related to academic burnout. (shrink)

The COVID-19 pandemic has highlighted the difficult task of balancing access to misinformation with respect for patient decision-making. Due to its innate antagonism, the paradigm of “physician paternalism” versus “patient autonomy” may not adequately capture the clinical relationship. The authors hypothesized that most patients would, in fact, prefer significant physician input as opposed to unopinionated information when making medical decisions. There is a lack of empirical data corroborating this in the United States. To that end, a survey was distributed (...) to 650 individuals through Amazon Mechanical Turk, of which 499 responses met pre-determined quality criteria. Most respondents believed their doctor's insight would be better than their own if injured or gravely ill. When asked to affirm preferences separately, a significantly higher proportion of respondents preferred guidance from their doctor when making medical decisions compared to being presented with unopinionated information ( p < 0.001). Encouragingly, 93.1% believed that the doctor's primary goal was their health. When asked directly to compare physician guidance to unopinionated information, 69.1% respondents stated they would prefer physician guidance. We found a consistent association between educational/economic background and affirmative responses ( p < 0.001), suggesting particular attention should be paid to patients that are disadvantaged with respect to these demographic factors. The belief in a shared goal, and a consistent preference for physician input, suggests that patients endorse a more collaborative view of the clinical dynamic than is suggested by the paternalism-autonomy paradigm. This pilot study suggests physicians should not be afraid to communicate conviction with regard to treatment decisions. (shrink)

How do “international” epistemic communities shape regulatory contests between transnational firms and civil society organizations in the Global South? With the establishment of the World Trade Organization, member states committed to basing trade-restrictive national regulations on science-based “international” standards set by “international” standard-setting bodies. Yet we know little about how the WTO regime has shaped the operation of epistemic communities within standard-setting bodies and, in turn, how standard-setting bodies articulate with national policy-making processes in the Global South. Building on work (...) in the new political sociology of science, I argue that neoliberal globalization and the establishment of the WTO have created incentives for Western epistemic communities to at once cast themselves as “international” under the WTO regime and orient their scientific agendas toward the priorities of transnational firms. Moreover, this transformation of epistemic communities has created opportunities for transnational firms facing contentious policy environments in the Global South to effectively outsource regulatory decision-making to “international” epistemic communities that can claim legal status under the WTO regime. Empirically, I focus on the case of one Western epistemic community—the Association of Analytical Communities International—and its claim to epistemic jurisdiction over pesticide residue standards for soft drinks in India. (shrink)

The Patient Self Determination Act of 1991 brought much needed attention to the importance of advance care planning and surrogate decision-making. The purpose of this law is to ensure that a patient’s preferences for medical care are recognized and promoted, even if the patient loses decision-making capacity. In general, patients are presumed to have DMC. A patient’s DMC may come under question when distortions in thinking and understanding due to illness, delirium, depression or other psychiatric symptoms are identified (...) or suspected. Physicians and other healthcare professionals working in hospital settings where medical illness is frequently comorbid with depression, adjustment disorders, demoralization and suicidal ideation, can expect to encounter ethical tension when medically sick patients who are also depressed or suicidal request do not resuscitate orders. (shrink)

Community research by anthropologists and sociologists details the effects that centralization of decision making has on local communities. As governance and regulation move toward global scales, conservation policy has devolved to the local levels, creating tensions in resource management and protection. Centralization without local participation can place communities at risk by eroding the environmental knowledge and decision making capacity of local people. Environmental problems such as water quality impairments require perception, interpretation, and ability to act locally. Through (...) a presentation of findings from farm communities in the Sugar Creek Watershed (Northeast Ohio, USA), this paper examines tradition, social scale, and land use among Anabaptist and other farm households, and refocuses on-farm conversation away from conventional individual metric-based studies and toward a systems approach. This new approach frames conservation behavior in a socio-cultural system that is influenced by tradition in on-farm decision making. Data from four subwatersheds are used to probe the effects of these variables on conservation adoption, explore the optimal farm size concept, and discus the roles of tradition and local and non-local knowledge in sustainability. (shrink)

Medical communication in Western-oriented countries is dominated by concepts of shared decision-making and patient autonomy. In interactions with Roma patients, these behavioral patterns rarely seem to be achieved because the culture and ethnicity have often been shown as barriers in establishing an effective and satisfying doctor–patient relationship. The study aims to explore the Roma’s beliefs and experiences related to autonomy and decision-making process in the case of a disease with poor prognosis. Forty-eight Roma people from two Romanian counties (...) participated in semi-structured interviews, conducted by a research team from the University of Medicine and Pharmacy of Iasi. Participants were recruited among the chronically ill patients and caregivers. The Roma community opposes informing the terminal patients about their condition, the “silence conspiracy” being widely practiced. The family fully undertakes the right of decision making, thus minimizing the patient’s autonomy. We identified ethical dilemmas concerning autonomy, lack of patients’ real decision-making power, and paternalistic attitudes exerted firstly by the family and, on demand, by the physician. Instead, the Roma patient benefits from a very active support network, being accompanied at the hospital by numerous relatives. The patient’s right to make autonomous decisions promoted in the Western countries and stipulated by the Romanian law has diminished value in the Roma community. For the Roma, the understanding of dignity is not simply individual and personal, but it is closely related to their cultural particularities. Ignoring their cultural values could create conflicts between healthcare providers and community. (shrink)

This case raises the difficult question of how to respond to patients who appear to lack decision-making capacity, yet retain limited communication that allows them to state a preference for life-sustaining treatment that conflicts with the choice of their surrogate. I argue that the patient’s preference should be honored, even though the patient lacks decision-making capacity, and the preference contradicts the wishes of the surrogate.

The Patients Changing Things Together (PATCHATT) programme supports individuals with a life-limiting illness to lead a change that matters to them. Individuals join a facilitated online peer support group to identify an issue they feel strongly about, plan for change and take action to bring that change about. The programme is developed and guided by a Programme Advisory Group with clinical and lay membership. This article charts the trialling of the patients changing thing together ethics pack, designed to support all (...) members of the Programme Advisory Group in taking an equal role in ethical decision-making as they guide the programme's ongoing development. As a trial of its efficacy, the pack was used by the author to consider an ethical dilemma at the heart of the development of the Patients Changing Things Together programme, that is, is it ethical to offer a community palliative care programme which has the potential to bring participants harm as well as good? The author reports a strong ethical argument for offering this programme, while concluding the need for the Programme Advisory Group to make the final decision, using the Patients Changing Things Together ethics pack to consider the results of the evaluation of the programme's pilot. The article concludes that this pack provides an effective tool to guide ethical novices through the ethical complexities of developing a community-based palliative care intervention programme. It raises the issue that such inclusivity is achieved through a normative decision-making process which denies the fluidity and creativity which may inform the best ethical decision-making practice. (shrink)

This study examines the communication strategies employed by MeritCare's public relations staff during the fen-phen case. The ethic of significant choice was the primary lens for the study. The study revealed that MeritCare's public relations staff members believed they did, in fact, follow the ethic of significant choice. Specifically, they perceived that the biases held by staff helped maintain the public's safety as the primary issue during the fen-phen events. They also believed that their communication strategies allowed them to avoid (...) ambiguity and emotionalized language. Finally, the staff members felt that teaming with Mayo Clinic in Rochester, Minnesota enabled them to influence the marketplace of ideas by capitalizing on the credible standing of Mayo Clinic. (shrink)

Obtaining a valid informed consent from an elderly person, especially when frail or with possible dementia, will initially involve the practical problem of assessing the ability to communicate. Only then can the assessment of decisionmaking capacities and the obtaining of informed consent for participation in research be progressed. Normal ageing does not impair communication or decision-making, but pathological status does, this may, or may not, be associated with the ageing process. Perceptual impairment may, in particular, interfere with the communication. (...) Once the subject appreciates and understands that he/she has the right to make a choice then it is important to ensure that he/she fully understands the decision he/she is being asked to make and can communicate and explain in his/her own words why a particular decision was made. In this paper suggestions, based upon existing guidelines or texts, will be made as to how to improve communication with the elderly and the capabilities that the subject must demonstrate to show his capacity to make a decision will be discussed. (shrink)

While most people may initially agree that justice is fairness, as an evangelical Protestant I argue that, for many religious comprehensive doctrines, the Rawlsean model does not possess the resources necessary to sustain tolerance in moral decision making. The weakness of Rawls's model centers on the reasonable priority of convictions that arise from private comprehensive doctrines. To attain a free and pluralistic society, people need resources sufficient to provide reasons to tolerate actions that are otherwise intolerable. In addition to (...) arguing for the deficiency of the Rawlsean political model, I sketch out a preliminary model of ambassadorship that offers religious communities, and in particular Protestant evangelicals, the necessary resources to engage the broader society tolerantly while maintaining their religious convictions. As a citizen of the church and a member of another kingdom, Christians serve as ambassadors to those who are not of the heavenly kingdom. I take this model to be more ambitious than that of a sojourner who lives in the land but is isolated as much as possible from society, while more modest than that of reconstructionists who seek to implement their own sacred law on all others. (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)

As the only nation in the western world without a national health insurance program, the United States faces ongoing issues of access and fairness in health care coverage. The Clinton administration tried and failed to address the problem of universal coverage. Since then we have focused on the narrower, but nonetheless real, issues of fairness and equity in the benefits package provided in insurance plans. The LORAN Commission spent two years trying to devise agreed-upon principles to govern such issues. The (...) lesson learned was the same as that of the Ethics Force study: there was no possibility of getting agreement, let alone consensus, among the participants on how to decide what should be a covered benefit. There were, however, two generally agreed upon principles that emerged regarding health care: “Every individual should be treated alike,” and “When it comes to health, cost cannot be a consideration.” That formula translated into providing everyone with everything. The only certain outcome from such a policy would be fiscal insolvency and ultimately bankruptcy. (shrink)

Rational decision making depends on what one believes, what one desires, and what one knows. In conventional decision models, beliefs are represented by probabilities and desires are represented by utilities. Software agents are knowledgeable entities capable of managing their own set of beliefs and desires, and they can decide upon the next operation to execute autonomously. They are also interactive entities capable of filtering communications and managing dialogues. Knowledgeability includes representing knowledge about the external world, reasoning with it, (...) and sharing it. Interactions include negotiations to perform tasks in cooperative, coordinative, and competitive ways. In this paper we focus on decision-making mechanisms for agent-based systems on the basis of agent interaction. We identify possible interaction scenarios and define mechanisms for decision making in uncertain environments. It is believed that software agents will become the underlying technology that offers the capability of distribution of competence, control, and information for the next generation of ubiquitous, distributed, and heterogeneous information systems. (shrink)

BackgroundThe participant recruitment process is a key ethical pivot point when conducting robust research. There is a need to continuously review and improve recruitment processes in research trials and to build fair and effective partnerships between researchers and participants as an important core element in ensuring the ethical delivery of high-quality research. When participants make a fair, informed, and voluntary decision to enroll in a study, they agree to fulfill their roles. However, supporting study participants to fulfill study requirements (...) is an important ethical obligation for researchers, yet evidenced as challenging to achieve. This paper reports on participants’ motivations to volunteer and remain part of a dietary study conducted in Kasungu District, Malawi.MethodsWe conducted twenty in-depth interviews (with chiefs, religious leaders, trial participants, and health surveillance assistants), five systematic ethnographic observations, and fourteen focus group discussions with trial participants and their partners. Interviews were audio-recorded and transcribed verbatim. We used a grounded theory methodology to analyse data that included coding, detailed memo writing, and data interpretation.FindingsThe findings reveal that many participants had concerns during the trial. Thematically, experiences included anxieties, mistrust of researchers, rumours, fears of exploitation, and misconceptions. Anonymous concerns collected from the participants were reported to the trial team which enabled the researchers to appropriately support participants. Despite initial concerns, participants described being supported and expressed motivation to take up their role.ConclusionThese findings highlight a diverse map of multiple notions of what is ethically relevant and what can impact participation and retention within a study. The study has revealed how embedding a responsive approach to address participants’ concerns and ethical issues can support trust relationships. We argue for the need to employ embedded ethics strategies that enhance informed consent, focus on participants’ needs and positive experiences, and support researchers to fulfill their roles. This work highlights the need for research ethics committees to focus on the risks of undue influence and prevent exploitation especially in settings with a high asymmetry in resources and power between researcher and participant groups.Trial Registration: The Addressing Hidden Hunger with Agronomy (Malawi) trial was registered on 5th March 2019 (ISCRTN85899451). (shrink)

Adopting a communication as constitutive of organization (CCO) perspective on ethics and corporate social responsibility (CSR) invites us to create the conditions of a dialogue, discussion, or debate between various stakeholders, who can then try to confront their respective positions on a given issue, and possibly come to a decision regarding how a situation should be evaluated and/or responded to. As shown in this article, getting human stakeholders to voice their concerns about a specific situation is a way not (...) only to rationally confront multiple viewpoints on what should be done about it (à la Habermas) but also to allow elements of this situation to reveal themselves in a discussion. This is why any ethical decision has to experience a form of undecidability and surprisability. When beliefs and opinions can be called into question, it means that participants are ready to become attentive to what a situation might surprisingly call for. Communication is therefore a matter of ventriloquism, as human participants should also be considered the means by which elements of a situation manage to express themselves in a discussion, dictating specific courses of action over others. This concretely means that multiple voices can be heard in such a scene: not only the voices of the human stakeholders who speak to each other but also the voices of facts, principles, future generations, ecosystems, populations that are made to say things through these various turns of talk. (shrink)

Journal Name: The Law & Ethics of Human Rights Issue: Ahead of print.

Motivations and decision-making styles that influence participation in biomedical research vary across study types, cultures, and countries. While there is a small amount of literature on informed consent in non-western cultures, few studies have examined how participants make the decision to join research. This study was designed to identify the factors motivating people to participate in biomedical research in a traditional Nigerian community, assess the degree to which participants involve others in the decision-making process, and examine (...) issues of autonomy in decision-making for research. A descriptive cross-sectional study was conducted with 100 adults (50 men, 50 women) in an urban Nigerian community who had participated in a biomedical research study. Subjects were interviewed using a survey instrument.Two-thirds of the respondents reported participating in the biomedical study to learn more about their illness, while 30% hoped to get some medical care. Over three-quarters (78%) of participants discussed the enrolment decision with someone else and 39% reported obtaining permission from a spouse or family member to participate in the study. Women were more than twice as likely as men to report obtaining permission from someone else before participating. More specifically, half of the female participants reported seeking permission from a spouse before enrolling. The findings suggest that informed consent in this community is understood and practised as a relational activity that involves others in the decision making process. Further studies are needed in non-Western countries concerning autonomy, decision-making, and motivation to participate in research studies. (shrink)

Recent evaluation of the practice of euthanasia and related medical decisions at the end of life in the Netherlands has shown a slight decrease in the frequency of physician-assisted death since the enactment of the Euthanasia Law in 2002. This paper focuses on the absence of euthanasia cases concerning patients with dementia and a written advance euthanasia directive, despite the fact that the only real innovation of the Euthanasia Law consisted precisely in allowing physicians to act upon such directives. The (...) author discusses two principal reasons for this absence. One relates to the uncertainty about whether patients with advanced dementia truly experience the suffering they formerly feared. There is reason to assume that they don’t, as a consequence of psychological adaptation and progressive unawareness (anosognosia). The second, more fundamental reason touches upon the ethical relevance of shared understanding and reciprocity. The author argues that, next to autonomy and mercifulness, “reciprocity” is a condition sine qua non for euthanasia. The absence thereof in advanced dementia renders euthanasia morally inconceivable, even if there are signs of suffering and notwithstanding the presence of an advance euthanasia directive. This does not mean, however, that advance euthanasia directives of patients with dementia are worthless. They might very well have a role in the earlier stages of certain subtypes of the disease. To illustrate this point the author presents a case in which the advance directive helped to create a window of opportunity for reciprocity and shared decision-making. (shrink)

BackgroundInformed consent is a key element of ethical clinical research. Addicted population may be at risk for impaired consent capacity. However, very little research has focused on their comprehension of consent forms. The aim of this study is to assess the capacity of addicted individuals to provide consent to research.Methods53 subjects with DSM-5 diagnoses of a Substance Use Disorder and 50 non psychiatric comparison subjects participated in the survey from December 2014 to March 2015. This cross-sectional study was carried out (...) at a community-based Outpatient Treatment Center and at an urban-located Health Centre in Spain. A binary judgment of capacity/incapacity was made guided by the MacArthur Competence Assessment Tool for Clinical Research and a clinical interview. Demographics and clinical characteristics were assessed by cases notes and the Mini-Mental State Examination, the Global Assessment Functional Scale and the Clinical Global Impression Scale.ResultsNPCs performed the best on the MacCAT–CR, and patients with SUD had the worst performance, particularly on the Understanding and Appreciation subscales. 32.7 % SUD people lacked research-related decisional capacity. There were no statistically significant differences between the groups in terms of capacity to consent to research.ConclusionsThe findings of our study provide evidence that a large proportion of individuals with SUD had decisional capacity for consent to research. It is therefore inappropriate to draw conclusions about capacity to make research decisions on the basis of a SUD diagnosis. In the absence of advanced cognitive impairment, acute withdrawal or intoxication, we should assume that addicted persons possess decision-making capacity. Thus, the view that people with SUD would ipso facto lose decision-making power for research consent is flawed and stigmatizing. (shrink)

Humans routinely make many decisions collectively, whether they choose a restaurant with friends, elect political leaders or decide actions to tackle international problems, such as climate change, that affect the future of the whole planet. We might be less aware of it, but group decisions are just as important to social animals as they are for us. Animal groups have to collectively decide about communal movements, activities, nesting sites and enterprises, such as cooperative breeding or hunting, that crucially affect their (...) survival and reproduction. While human group decisions have been studied for millennia, the study of animal group decisions is relatively young, but is now expanding rapidly. It emerges that group decisions in animals pose many similar questions to those in humans. The purpose of the present issue is to integrate and combine approaches in the social and natural sciences in an area in which theoretical challenges and research questions are often similar, and to introduce each discipline to the other’s key ideas, findings and successful methods. In order to make such an introduction as effective as possible, here, we briefly review conceptual similarities and differences between the sciences, and provide a guide to the present issue. (shrink)