Background Research on the impact of ethics reflection groups (ERG) (also called moral case deliberations (MCD)) is complex and scarce. Within a larger study, two years of ERG sessions have been used as an intervention to stimulate ethical reflection about the use of coercive measures. We studied changes in: employees’ attitudes regarding the use of coercion, team competence, user involvement, team cooperation and the handling of disagreement in teams. Methods We used panel data in a longitudinal design study to measure (...) variation in survey scores from multidisciplinary employees from seven departments within three Norwegian mental health care institutions at three time points (T0–T1–T2). Mixed models were used to account for dependence of data in persons who participated more than once. Results In total, 1068 surveys (from 817 employees who did and did not participate in ERG) were included in the analyses. Of these, 7.6% (N = 62) responded at three points in time, 15.5% (N = 127) at two points, and 76.8% (N = 628) once. On average, over time, respondents who participated in ERG viewed coercion more strongly as offending (p < 0.05). Those who presented a case in the ERG sessions showed lower scores on User Involvement (p < 0.001), Team Cooperation (p < 0.01) and Constructive Disagreement (p < 0.01). We observed significant differences in outcomes between individuals from different departments, as well as between different professions. Initial significant changes due to frequency of participation in ERG and case presentation in ERG did not remain statistically significant after adjustment for Departments and Professions. Differences were generally small in absolute terms, possibly due to the low amount of longitudinal data. Conclusions This study measured specific intervention-related outcome parameters for describing the impact of clinical ethics support (CES). Structural implementation of ERGs or MCDs seems to contribute to employees reporting a more critical attitude towards coercion. Ethics support is a complex intervention and studying changes over time is complex in itself. Several recommendations for strengthening the outcomes of future CES evaluation studies are discussed. CES evaluation studies are important, since—despite the intrinsic value of participating in ERG or MCD—CES inherently aims, and should aim, at improving clinical practices. (shrink)

Many of the elderly in nursing homes are very ill and have a reduced quality of life. Life expectancy is often hard to predict. Decisions about life-prolonging treatment should be based on a professional assessment of the patient’s best interest, assessment of capacity to consent, and on the patient’s own wishes. The purpose of this study was to investigate and compare how these types of decisions were made in nursing homes and in hospital wards. Using a questionnaire, we studied the (...) decision-making process for 299 nursing home patients who were treated for dehydration using intravenous fluids, or for bacterial infections using intravenous antibiotics. We compared the 215 patients treated in nursing homes to the 84 nursing home patients treated in the hospital. The patients’ capacity to consent was considered prior to treatment in 197 of the patients treated in nursing homes and 56 of the patients treated in hospitals. The answers indicate that capacity to consent can be difficult to assess. Patients that were considered capable to consent, were more often involved in the decision-making in nursing homes than in hospital. Next of kin and other health personnel were also more rarely involved when the nursing home patient was treated in hospital. Whether advance care planning had been carried out, was more often unknown in the hospital. Hospital doctors expressed more doubt about the decision to admit the patient to the hospital than about the treatment itself. This study indicates a potential for improvement in decision-making processes in general, and in particular when nursing home patients are treated in a hospital ward. The findings corroborate that nursing home patients should be treated locally if adequate health care and treatment is available. The communication between the different levels of health care when hospitalization is necessary, must be better. ClinicalTrials. gov NCT01023763 [The registration was delayed one month after study onset due to practical reasons]. (shrink)

The main idea of this article is to present various perspectives in order to analyze the recent crisis concerning the agriculture-based rural societies in the developed capitalist communities. In all of these countries there is a production crisis, resulting in too much food. But this is also an ideological crisis, because the consumer thinks that the food is produced at too high a price. And it is a political crisis as well because a major part of the voters think subsidies (...) and trade barriers are too high. The paper argues that beneath the present agricultural and rural policy crisis lies the failure of three great projects of our time: 1) The project of natural science; 2) The project of liberal capitalism; and 3) The project of scientific socialism. The failure of these three projects has to do with the breakdown of the positivist idea of modernization. Modernization theory was partly wrong because it overlooked the persistence of locally based life modes. Those life modes must be understood before a sustainable rural development is found. The article reviews some contemporary social science perspectives that have recently been developed to grasp the fundamental changes of today's rural societies. Based on those perspectives and primarily the life mode perspective, five key elements that are essential to analyze if we want to understand future development are isolated: food production, resources, space, social diversity, and culture. (shrink)

Clinical ethics committees have recently been established in nearly all Norwegian hospital trusts. One important task for these committees is clinical ethics consultations. This qualitative study explores significant barriers confronting the ethics committees in providing such consultation services. The interviews with the committees indicate that there is a substantial need for clinical ethics support services and, in general, the committee members expressed a great deal of enthusiasm for the committee work. They also reported, however, that tendencies to evade moral disagreement, (...) conflict, and ‘outsiders’ are common in the hospitals. Sometimes even the committees comply with some of these tendencies. The committees agree that there is a need to improve their routines and procedures, clarify the committees' profile and field of responsibility, to make the committees well‐known, to secure adequate operating conditions, and to develop organizational integration and support. Various strategies to meet these challenges on a local, regional or national level are also explored in this paper. (shrink)

This article raises the issue of the extent to which a single nation can develop a “national agricultural policy,” pursuing internal goals in agrarian development, goals that vary significantly from those of other industrialized countries. What are the conflicts arising from such a policy and how do these conflicts interfere with the general agricultural crisis of these countries? The Norwegian case is explored as an example of a blend of social-democratic and center-populist agricultural policies. The decision in 1975 by the (...) Norwegian Parliament to establish the income level of farmers at the same level as workers is seen as an experiment. As agricultural policy, this new departure represented a deviation from the earlier policies of rationalization. The Social Democrats developed their new position as a result of internal and external pressure. A series of reforms financed by the new state incomes from oil production were undertaken, of which income equalization and a farm relief service were the most important. Most Norwegian farmers speak of the reform years as “the good years of escalation.” Equity was reached in 1982, but nevertheless several problems emerged: 1) the escalation of subsidized incomes led to overproduction and decreasing incomes from the market (after 1982), 2) the large budgetary transfers to agriculture caused a legitimation crisis, fueling the constituency of the right-wing Progress Party, 3) the large subsidies to agriculture contributed to the fiscal crisis of the state, 4) the problems mentioned above, contributed to the general crisis of the Norwegian Social Democracy which finds itself with dwindling support. The likely outcome of the present Norwegian farm crisis is the implementation of an agricultural policy that will protect the most vulnerable sector and open the more competitive sector to market forces. (shrink)

An ethics reflection group is one of a range of ethics support services developed to better handle ethical challenges in healthcare. The aim of this article is to evaluate the implementation process of interdisciplinary ERGs in psychiatric and general hospital departments in Denmark. To our knowledge, this is the first study of ERG implementation to include both psychiatric and general hospital departments. The implementation and evaluation strategies are inspired by action research, using a qualitative approach and systematic text condensation of (...) 28 individual interviews and 4 focus groups with clinicians, ethics facilitators and ward managers. The implementation process was influenced by both structural factors and factors related to clinicians having different values, interests and experiences. Structural barriers and promotors in the process to implement ERG included the following sub-categories: Organizational factors, recruitment and training of ethics facilitators, the deliberation model, planning and recruitment of participants to the ERGs, the support of the ward managers and the project group. Barriers and promotors found among clinicians included the following sub-categories: Expectations and pre-understandings of ERGs, understandings of a physician’s job, challenges experienced by ethics facilitators. At the end of the study, when it was decided that the ERGs should be continued, the implementation strategies were remodeled by the participants to meet new challenges. The study of ERG implementation identified important structural and professional barriers and promotors that are likely to be relevant to anyone wanting to implement ethics support services across various types of healthcare services. (shrink)

If ethics consultation services influence medical decisions it is important to evaluate how ethical dilemmas are dealt with by clinical ethics committees (CECs). Such evaluation is rare. This study presents a feasible and practical method of evaluating case discussions in CECs and the results emerging from the use of this method. A written presentation of an end-of-life dilemma was sent to all Norwegian ethics committees. The committees were asked to deal with the case as they would do if it was (...) a real case, and to prepare a written report of the discussion. A majority of the committees approached the case systematically. All emphasized the importance of good communication with the next of kin. However, their conclusions varied, medical facts were interpreted differently, possible patient suffering was dealt with differently, and some committees revealed insufficient legal knowledge. Such findings are useful in the future education of committee members. (shrink)

All health care systems face problems of justice and efficiency related to setting priorities for allocating a limited pool of resources to a population. Because many of the central issues are the same in all systems, the United States and other countries can learn from the successes and failures of countries that have explicitly addressed the question of health care priorities. We review explicit priority setting efforts in Norway, Sweden, Israel, the Netherlands, Denmark, New Zealand, the United Kingdom and the (...) state of Oregon in the US. The approaches used can be divided into those centered on outlining principles versus those that define practices. In order to establish the main lessons from their experiences we consider the process each country used, criteria to judge the success of these efforts, which approaches seem to have met these criteria, and using their successes and failures as a guide, how to proceed in setting priorities. We demonstrate that there is little evidence that establishment of a values framework for priority setting has had any effect on health policy, nor is there evidence that priority setting exercises have led to the envisaged ideal of an open and participatory public involvement in decision making. (shrink)

The first clinical ethics committees in Norway were established in 1996. This started as an initiative from hospital clinicians, the Norwegian Medical Association, and health authorities and politicians. Norwegian hospitals are, by and large, publicly funded through taxation, and all inpatient treatment is free of charge. Today, all the 23 hospital trusts have established at least one committee. Center for Medical Ethics , University of Oslo, receives an annual amount of US$335,000 from the Ministry of Health and Care Services to (...) coordinate the committees and to facilitate competency building for committee members. (shrink)

An introduction to the political philosophy of Kant, exploring how he developed his views in a context shaped by controversies following the French revolution. It provides new information on his followers and critics as they engaged in high stakes political debates on freedom's relation to the state at this key turning point in history.

A systematic literature review on evaluation of clinical ethics support services in mental healthcare is presented and discussed. The focus was on (a) forms of clinical ethics support services, (b) evaluation of clinical ethics support services, (c) contexts and participants and (d) results. Five studies were included. The ethics support activities described were moral case deliberations and ethics rounds. Different qualitative and quantitative research methods were utilized. The results show that (a) participants felt that they gained an increased insight into (...) moral issues through systematic reflection; (b) there was improved cooperation among multidisciplinary team members; (c) it was uncertain whether clinical ethics support services led to better patient care; (d) the issue of patient and client participation is complex; and (e) the implementation process is challenging. Clinical ethics support services have mainly been studied through the experiences of the participating facilitators and healthcare professionals. Hence, there is limited knowledge of whether and how various types of clinical ethics support services influence the quality of care and how patients and relatives may evaluate clinical ethics support services. Based on the six excluded ‘grey zone articles’, in which there was an implicit focus on ethics reflection, other ways of working with ethical reflection in practice are discussed. Implementing and evaluating clinical ethics support services as approaches to clinical ethics support that are more integrated into the development of good practice are in focus. In order to meet some of the shortcomings of the field of clinical ethics support services, a research project that aims to strengthen ethics support in the mental health services, including patients’ and caregivers’ views on ethical challenges, is presented. (shrink)

Like the French revolutionaries, Kant defended individual rights and a republican constitution. That he nonetheless rejected a right of revolution has puzzled scholars. In this article I give an overview of Kant’s rejection of a right of revolution, compare it to the German intellectual context, and use it to explain Kant’s view of the events in France. In Kant’s nuanced account of the revolution’s two central phases, he refined a distinction between legitimate political transition and lawless popular rebellion.

To Kant, the French revolution's central events were the transfer of sovereignty to the people in 1789 and the trial and execution of the monarch in 1792-1793. Through a contextual study, this Element argues that while both events manifested the principle of popular sovereignty, the first did so in lawful ways, whereas the latter was a perversion of the principle. Kant was convinced that historical examples can help us understand political philosophy, and this Element seeks to show this in practice.

Empathy is generally regarded as important and positive. However, descriptions of empathy are often inadequate and deceptive. Furthermore, there is a widespread lack of critical attention to such deficiencies. This critical review of the medical discourse of empathy shows that tendencies to evade and misrepresent the understanding subject are common. The understanding subject’s contributions to the empathic process are often neglected or described as something that can and should be avoided or controlled. Furthermore, the intrinsic and closely interwoven relationship between (...) medical understanding and empathy is generally not explored. Instead of challenging objectivistic and instrumental ideals, the medical discourse of empathy tends to accommodate to inadequate ideals of objectivity and instrumentalism. Thus, important aspects of physician’s rationality, understanding, and morality are neglected and important opportunities for reflection, dialogue, and critique are forfeited. Both the critical and constructive parts of this paper are heavily inspired by philosophical hermeneutic insights, e.g. that physician’s empathy is always historically situated and part of a moral commitment. At the end of this paper, an alternative description of empathy - i.e. appropriate understanding of another human being - is outlined to facilitate the inclusion of hermeneutic insights and accentuate the inherent relationship between empathy and morality. (shrink)

In this issue, Alex London and Kevin Zollman provide an analysis of an influential approach to the ethics of international research, known as the “fair benefits” approach. According to them, the fair benefits approach suffers from a fatal flaw: it is either too vague to be useful, or worse, is internally inconsistent. The fair benefits approach was developed based on a presentation I gave at a workshop organized in Malawi in March 2001 by the National Institutes of Health Clinical Center’s (...) Department of Bioethics. In this presentation, I made what I still think is a valid point, which was accepted by the diverse group of participants and formed the basis of the subsequent publications: One should not .. (shrink)

This paper argues that, although no resistance or revolution is permitted in the Kantian state, very tyrannical regimes must not be obeyed because they do not qualify as states. The essay shows how a state ceases to be a state, argues that persons have a moral responsibility to judge about it and defends the compatibility of this with Kantian authority. The reconstructed Kantian view has implications for how we conceive authority and obligation. It calls for a morally demanding definition of (...) the state and asserts that the primary personal responsibility is not to evaluate the morality of every single law but to evaluate the moral standing of the polity.Send article to KindleTo send this article to your Kindle, first ensure [email protected] is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle. Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply. Find out more about the Kindle Personal Document Service.Kant, the State, and RevolutionVolume 18, Issue 1Reidar Maliks DOI: https://doi.org/10.1017/S1369415412000271Your Kindle email address Please provide your Kindle [email protected]@kindle.com Available formats PDF Please select a format to send. By using this service, you agree that you will only keep articles for personal use, and will not openly distribute them via Dropbox, Google Drive or other file sharing services. Please confirm that you accept the terms of use. Cancel Send ×Send article to Dropbox To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about sending content to Dropbox. Kant, the State, and RevolutionVolume 18, Issue 1Reidar Maliks DOI: https://doi.org/10.1017/S1369415412000271Available formats PDF Please select a format to send. By using this service, you agree that you will only keep articles for personal use, and will not openly distribute them via Dropbox, Google Drive or other file sharing services. Please confirm that you accept the terms of use. Cancel Send ×Send article to Google Drive To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about sending content to Google Drive. Kant, the State, and RevolutionVolume 18, Issue 1Reidar Maliks DOI: https://doi.org/10.1017/S1369415412000271Available formats PDF Please select a format to send. By using this service, you agree that you will only keep articles for personal use, and will not openly distribute them via Dropbox, Google Drive or other file sharing services. Please confirm that you accept the terms of use. Cancel Send ×Export citation. (shrink)

When Kant in 1793 rejected a right of revolution, he was immediately criticized by a group of radical followers who argued that he had betrayed his own principles of justice. Jakob, Erhard, Fichte, Bergk and Schlegel proceeded to defend a right of resistance and revolution based on what they took to be his true principles. I argue that we must understand Kant's Metaphysics of Morals, which came in 1797, partly as a response to these radical democratic writings. Exploring this forgotten (...) controversy reveals that Kant did not betray his own principles when he denied a right of revolution, because he did not mean that persons have an unconditional duty to obey. This becomes clear when we read the final developments of Kant's thinking on individual liberty and republican government in light of the radical critique. (shrink)

Ethical issues related to comparative effectiveness research, or research that compares existing standards of care, have recently received considerable attention. In this paper we focus on how Ethics Review Committees should evaluate the risks of comparative effectiveness research. We discuss what has been a prominent focus in the debate about comparative effectiveness research, namely that it is justified when “nothing is known” about the comparative effectiveness of the available alternatives. We argue that this focus may be misleading. Rather, we should (...) focus on the fact that some experts believe that the evidence points in favor of one intervention, whereas other experts believe that the evidence favors the alternative. We will then introduce a case that illustrates this point, and based on that, discuss how ERCs should deal with such cases of expert disagreement. We argue that ERCs have a duty to assess the range of expert opinions and based on that assessment arrive at a risk judgment about the study under consideration. We also argue that assessment of expert disagreement is important for the assignment of risk level to a clinical trial: what is the basis for expert opinions, how strong is the evidence appealed to by various experts, and how can clinical trial monitoring affect the possible increased risk of clinical trial participation. (shrink)

Obligations of global justice rest mainly on the global rich but also to a lesser extent on the global poor. The governments of poor countries are obliged to fulfill requirements of non-aggression, good governance and decency, along with all other requirements which facilitate the achievement of global justice. So far, obligations of poor countries seem to be taken as given yet the behavior of governments in poor countries and occurrences therein attest to the contrary;this suggests a need to mainstream these (...) obligations in discussions about global justice. If poor countries do not live up to these requirements obstacles arise to the realization of global justice; and they act unjustly in relation to citizens of rich countries which provide them with aid. Uganda is taken as a case in point. (shrink)

"The growing interest in human rights has recently brought the question of their philosophical foundation to the foreground. Theorists of human rights often assume that their ideal can be traced to the philosophy of Immanuel Kant and his view of humans as ends in themselves. Yet, few have attempted to explore exactly how human rights should be understood in a Kantian framework. The scholars in this have gathered to fill this gap. Divided in three parts, firstly the Kantian notion of (...) human rights is explored, with particular emphasis on how it applies to levels of government beyond the state. The second part explores the scope of human rights, including the contentious questions of whether it includes welfare rights and freedom of speech across borders. The topic of the final section is human rights institutions, with a special focus on the legitimacy of international human rights courts. Human rights have become a force to reckon with in international politics. This book, written by an international team of specialists on Kant and human rights, contributes to understanding a major political development of our times"--. (shrink)

It has been suggested that focusing on procedures when setting priorities for health care avoids the conflicts that arise when attempting to agree on principles. A prominent example of this approach is “accountability for reasonableness.” We will argue that the same problem arises with procedural accounts; reasonable people will disagree about central elements in the process. We consider the procedural condition of appeal process and three examples of conflicts over coverage decisions: a patients’ rights law in Norway, health technologies coverage (...) recommendations in the UK, and care withheld by HMOs in the US. In each case a process is at the center of controversy, illustrating the difficulties in establishing procedures that are widely accepted as legitimate. Further work must be done in developing procedural frameworks. (shrink)

Obligations of global justice rest mainly on the global rich but also to a lesser extent on the global poor. The governments of poor countries are obliged to fulfill requirements of non-aggression, good governance and decency, along with all other requirements which facilitate the achievement of global justice. So far, obligations of poor countries seem to be taken as given yet the behavior of governments in poor countries and occurrences therein attest to the contrary;this suggests a need to mainstream these (...) obligations in discussions about global justice. If poor countries do not live up to these requirements obstacles arise to the realization of global justice; and they act unjustly in relation to citizens of rich countries which provide them with aid. Uganda is taken as a case in point. (shrink)

In recent years, political philosophers have debated whether human rights are a special class of moral rights we all possess simply by virtue of our common humanity and which are universal in time and space, or whether they are essentially modern political constructs defined by the role they play in an international legal-political practice that regulates the relationship between the governments of sovereign states and their citizens. This edited volume sets out to further this debate and move it ahead by (...) rethinking some of its fundamental premises and by applying it to new and challenging domains, such as socio-economic rights, indigenous rights, the rights of immigrants and the human rights responsibilities of corporations. Beyond the philosophy of human rights, the book has a broader relevance by contributing to key themes in the methodology of political philosophy and by addressing urgent issues in contemporary global policy making. (shrink)

This book, edited by a team of leading European bioethicists, is in all respects an innovative publication.

This article presents a case study from the history of cardiology, namely, the development towards the acceptance of the coronary theory of angina pectoris. I show that the arguments which were considered decisive against the theory were not answered at the time the theory was accepted. I also point out that the experimental and practical success of the theory cannot be used to support the initial choice because, in the subsequent development, the field researchers became preoccupied with new questions and (...) problems. In spite of this, there is a sense in which the field of angina research has progressed, but it remains a challenge to exactly characterise in what sense this is the case. (shrink)

This paper gives an account of theory structure in the biomedical sciences with particular emphasis on cardiology. Rather than regarding theories as axiomatizable sets of statements (the so-called received view), theories are regarded as answers to questions which are accepted as legitimate and interesting by scientists within a field of investigation at a given time. This account of theory structure is used to distinguish between theories which are quite liable to be revised during the course of scientific investigation, here called (...) theories within the field, and theories which are more securely established, here called theories of the field. These latter theories can also be regarded as patterns of reasoning which are applied again and again to answer the questions of the field. It is argued that the distinction proposed in this paper fits our intuitive understanding of what it means for a theory to be securely established within a field of research. Several examples are given which show the problems of justifying clinical intervention solely on the basis of theories within the field. (shrink)

It is a remarkable fact about the development of medical ethics from the 1960s until today that there has been a dramatic shift from a position where it was taken for granted that the physician knows best, to a position where much greater emphasis is put on the patient’s treatment preferences. This shift is evident with regard to physician attitudes towards disclosing a cancer diagnosis. For example, in 1961, a survey of cancer physicians showed that almost 90% of the physicians (...) reported that their usual policy was not to tell their patients that they had cancer . The survey was repeated in 1979, and it showed a complete reversal in attitudes over this 20-year period. 90% reported that their usual policy was to tell their patients that they had cancer .One common way of justifying the new approach is to claim that patients have a right to make their own treatment decisions, referring to the basic value of patient autonomy. However, it is immediately obvious that physicians should not respect all choices made by patients. Consider the following case: A thirty-eight-year-old man with mild upper respiratory infection suddenly developed severe headache, stiff neck, and high fever. He went to an emergency room for help. The diagnosis was pneumococcal meningitis, a bacterial meningitis almost always fatal if not treated. If treatment is delayed, permanent neurological damage is likely. A physician told the patient that urgent treatment was needed to save his life and forestall brain damage. The patient refused to consent to treatment saying he wanted to be allowed to die .Very few, if any, physicians would respect this person’s treatment choice. The reason is that this patient is not competent to make his own decisions. Respect for autonomy only requires that the choices of patients who are competent to make their own decisions are honoured. Judgements about which patients are competent to make their own decisions therefore become crucial. (shrink)

Decision analysts sometimes use the results of clinical trials in order to evaluate treatment alternatives. I discuss some problems associated with this, and in particular I point out that it is not valid to use the estimates from clinical trials as the probabilities of events which are needed for decision analysis. I also attempt to show that an approach based on objective statistical theory may have advantages over commonly used methods based on decision theory. These advantages include the recognition of (...) uncertain data, the introduction of a third alternative, namely suspension of judgement, and the possibility of modifying the choice of probabilities based on a clinical trial with reference to other available knowledge. I have not, however, shown in detail how this modification is done, but I think the concept is sufficiently promising to be applied to an actual clinical decision problem. (shrink)

BackgroundEthically challenging critical events and decisions are common in nursing homes. This paper presents nursing home doctors’ descriptions of how they include the patient and next of kin in end-of-life decisions.MethodsWe performed ten focus groups with 30 nursing home doctors. Advance care planning; aspects of decisions on life-prolonging treatment, and conflict with next of kin were subject to in-depth analysis and condensation.ResultsThe doctors described large variations in attitudes and practices in all aspects of end-of-life decisions. In conflict situations, many doctors (...) were more concerned about the opinion of next of kin than ensuring the patient’s best interest.ConclusionsMany end-of-life decisions appear arbitrary or influenced by factors independent of the individual patient’s values and interests and are not based on systematic ethical reflections. To protect patient autonomy in nursing homes, stronger emphasis on legal and ethical knowledge among nursing home doctors is needed. (shrink)

Democratic theorists are usually dismissive about the idea that citizens act “through” their representatives and often hold persons to exercise true political agency only at intervals in elections. Yet, if we want to understand representative government as a proper form of democracy and not just a periodical selection of elites, continuous popular agency must be a feature of representation. This article explores the Kantian attempt to justify that people can act “through” representatives. I call this the “exercise view” of representation (...) and defend its superiority to the “opportunity view,” which I attribute to Locke. It is superior because it has a robust conception of rationality and collective action, allowing us to understand how representation can mediate public reason. (shrink)

As the rapidly advancing possibilities of biotechnology have outstripped the adaptive capacity of current legal and ethical institutions, a vigorous debate has arisen that considers the boundaries of appropriate use of this technology, particularly when applied to humans. This article examines ethical concerns surrounding the development of markets in a particular form of human genetic engineering in which heterozygotes are fitter than both homozygotes, a condition known as heterozygous advantage. To begin, we present a generalized model of the condition, illuminated (...) by the application to sickle-cell anemia. Next, we propose a typology of related markets, some of which are currently functioning with available products and services, and others that are widely viewed as imminent. We suggest the manner in which perverse incentives may arise for firms that market genetic intervention in circumstances where heterozygous advantage is possible. Finally, we propose that this misalignment of incentives with social welfare has arisen from both ill-conceived market intervention where markets are capable of achieving efficient outcomes and the lack of market intervention where markets have failed. We offer specific legal and regulatory approaches for reform. (shrink)

In rapidly evolving medical fields where the standard of care or prevention changes frequently, guidelines are increasingly likely to conflict with what participants receive in research. Although guidelines typically set the standard of care, there are some cases in which research can justifiably deviate from guidelines. When guidelines conflict with research, an ethical issue only arises if guidelines are rigorous and should be followed. Next, it is important that the cumulative evidence and the conclusions reached by the guidelines do not (...) eliminate the need for further research. Even when guidelines are rigorous and the study still asks an important question, we argue that there may be good reasons for deviations in three cases: (1) when research poses no greater net risk than the standard of care; (2) when there is a continued need for additional evidence, for example, when subpopulations are not covered by the guidelines; and (3) less frequently, when clinical practice guidelines can be justified by the evidence, but practitioners disagree about the guidelines, and the guidelines are not consistently followed as a result. We suggest that procedural protections may be especially useful in deciding when studies in the third category can proceed. (shrink)