The use of placebos in therapy or research poses ethical questions. What are the benefits and the costs in ethical terms of condoning deception of the patient or subject? What does the deception mean for the patient's or subject's right to give informed consent to his treatment? Doctors are rightly expected to disclose to their patient facts which would in their judgement best enable him to give informed consent to treatment. On occasion, the degree of this disclosure may be limited (...) by the need to avoid hazarding the success of treatment of an unstable patient whose condition threatens his life, but doctors should have no right to withhold information just to prevent a patient refusing consent to therapy. No such limitation should apply in experiments where full disclosure must operate to enable the subject to give his informed consent. The potential medical benefits for the patient of placebo therapy have to be weighed against all the ethical costs of the deception and dishonesty involved, including the longer term repercussions on doctor/patient trust: similar ethical costs may arise in experiments involving the use of placebos without disclosure of this as a possibility to the subject. Deception is ethically degrading to both parties not only being a breach of trust, but denying the moral autonomy of the patient or subject to make his own choice. The writer concludes that placebos should be used only with full disclosure and consent whether in therapy or in research, and that this need not impede the success of either. (shrink)

_The dynamic development of medical technologies, i.e. the use of medicinal products and medical procedures, requires reflection on the ways to ensure the safety of patients and people using such methods of treatment (medical professionals) in legal and ethical terms. This applies in particular to the currently observed influence of the media on the actions taken in the health care system in Poland as well as individual decisions of patients on the use of the offered drugs (...) and other medical procedures._ _The article presents selected legal provisions defining the conditions for the use of medicinal products (drugs) and experimental medical procedures. The basic element of the considerations is to indicate the legal conditions for this type of use of medical technologies understood in this way, also in a broader context – with the characteristics of ethical conditions for „the media message”, including ensuring its proper quality for the protection of public health._. (shrink)

Consent transforms an otherwise illegitimate act into a legitimate one. To be valid, however, it must be adequately informed. The legal requirement is vague and provides little assistance in predicting when it will be satisfied. This is particularly so when a patient consents to a procedure and the physician subsequently varies one of the components of that procedure. Using three legal judgments and one General Medical Council decision as a springboard, I have explored the concept of a medical (...) procedure within the context of consent and developed a theoretical model to elucidate a more predictable and consistent informational requirement. (shrink)

Human reproductive cloning has not yet resulted in any live births. There has been widespread condemnation of the practice in both the scientific world and the public sphere, and many countries explicitly outlaw the practice. Concerns about the procedure range from uncertainties about its physical safety to questions about the psychological well-being of clones. Yet, key aspects such as the philosophical implications of harm to future entities and a comparison with established reproductive technologies such as in vitro fertilisation are often (...) overlooked in discussions about HRC. Furthermore, there are people who are willing to use the technology. Several scientists have been outspoken in their intent to pursue HRC. The importance of concerns about the physical safety of children created by HRC and comparisons with concerns about the safety of IVF are discussed. A model to be used to determine when it is acceptable to use HRC and other new assisted reproductive technologies, balancing reproductive freedom and safety concerns, is proposed. Justifications underpinning potential applications of HRC are discussed, and it is determined that these are highly analogous to rationalisations used to justify IVF treatment. It is concluded that people wishing to conceive using HRC should have a prima facie negative right to do so. (shrink)

Not the least noticeable is the fact that the ancient Greek compound euthanasia, formed by Francis Bacon, has retained its original terminological form since it was first used in the 17th century. Among all other controversial ethical issues, however, the conceptual notion of euthanasia categorically evokes rather important controversies. The questions that arise in this context are whether there is a definition, or at least a determination, of the term euthanasia and whether we are aware of its use in scientific (...) discourse, what exactly is euthanasia. The paper offers a terminological elaboration of the term euthanasia in a linguistic, but mainly legal and medical-procedural context, in order to examine the coherence in defining the term between these categories and, consequently, to determine the key determinants of euthanasia according to categorical sections. The key facts stated are the primary determination or the possible definition of the term for any further scientific study of euthanasia as one of the most controversial issues within bioethical doctrine. (shrink)

Objective: To study the preferences of patients for information related to elective procedures.Methods: A survey was carried out using a sample of 187 women. The majority of whom were on a low-income, who obtained obstetric or gynaecological services at St Joseph Regional Medical Center in Milwaukee, Wisconsin, while they were in a waiting room.Results: Many of the complications, including those that are uncommon and less serious, were considered to be relevant to the medical decisions of most patients. (...) Average seriousness ratings associated with complications of various elective procedures were in the range of moderate to high. A frequency of complications of 1:100 or higher would factor into most women’s elective treatment decisions. Women indicated a preference for receiving as much or more information pertaining to complications associated with particular elective obstetric or gynaecological procedures as other elective procedures.Conclusion: Most women wish to be informed of risks and treatment alternatives, rate many complications as serious, and are likely to use information provided to make elective treatment decisions. (shrink)

Parents are usually appreciated as possessing legitimate moral authority to compel children to make at least modest sacrifices in the service of widely shared values of moral decency. This essay argues that such authority justifies allowing parents to authorize a child to serve as an organ or tissue donor in certain circumstances, such as to authorize bone marrow donations to save a sibling with whom the potential donor shares a deep emotional bond. The approach explored here suggests, however, that at (...) least under some conditions, parents have legitimate authority to authorize donations forbidden by current guidelines. (shrink)

The increasing application of artificial intelligence (AI) to healthcare raises both hope and ethical concerns. Some advanced machine learning methods provide accurate clinical predictions at the expense of a significant lack of explainability. Alex John London has defended that accuracy is a more important value than explainability in AI medicine. In this article, we locate the trade-off between accurate performance and explainable algorithms in the context of distributive justice. We acknowledge that accuracy is cardinal from outcome-oriented justice because it helps (...) to maximize patients’ benefits and optimizes limited resources. However, we claim that the opaqueness of the algorithmic black box and its absence of explainability threatens core commitments of procedural fairness such as accountability, avoidance of bias, and transparency. To illustrate this, we discuss liver transplantation as a case of critical medical resources in which the lack of explainability in AI-based allocation algorithms is procedurally unfair. Finally, we provide a number of ethical recommendations for when considering the use of unexplainable algorithms in the distribution of health-related resources. (shrink)

Concerns are frequently raised about the extent to which formal consent procedures actually lead to “informed” consent. As part of a study of consent to high-risk medical procedures, we analyzed in-depth interviews with 16 health care professionals working in bone-marrow transplantation in Sydney, Australia. We find that these professionals recognize and act on their responsibility to inform and educate patients and that they expect patients to reciprocate these efforts by demonstrably engaging in the education process. This expectation (...) is largely implicit, however, and when it is not met, this can give rise to trouble that can have adverse consequences for patients, physicians, and relationships within the clinic. We revisit the concept of the sick role to formalize this new role expectation, and we argue that “informed” consent is a process that is usually incomplete, despite trappings and assumptions that help to create the illusion of completeness. (shrink)

Speech is a primary means of human communication and one of the most basic features of human conduct. Voice is an important part of its subsystems. A speech disorder is a condition that affects the ability of a person to speak normally, which occasionally results in voice impairment with psychological and emotional consequences. Early detection of voice problems is a crucial factor. Computer-based procedures are less costly and easier to administer for such purposes than traditional methods. This study highlights (...) the following issues: recent studies, methods of voice pathology detection, machine learning and deep learning (DL) methods used in data classification, main datasets utilized, and the role of Internet of things (IoT) systems employed in voice pathology diagnosis. Moreover, this study presents different applications, open challenges, and recommendations for future directions of IoT systems and artificial intelligence (AI) approaches in the voice pathology diagnosis. Finally, this study highlights some limitations of voice pathology datasets in comparison with the role of IoT in the healthcare sector, which shows the urgent need to provide efficient approaches and easy and ideal medical diagnostic procedures and treatments of disease identification for doctors and patients. This review covered voice pathology taxonomy, detection techniques, open challenges, limitations, and recommendations for future directions to provide a clear background for doctors and patients. Standard databases, including the Massachusetts Eye and Ear Infirmary, Saarbruecken Voice Database, and the Arabic Voice Pathology Database, were used in most articles reviewed in this article. The classes, features, and main purpose for voice pathology identification are also highlighted. This study focuses on the extraction of voice pathology features, especially speech analysis, extends feature vectors comprising static and dynamic features, and converts these extended feature vectors into solid vectors before passing them to the recognizer. (shrink)

Procedures such as organ or tissue donation, elective ventilation and non‐therapeutic research can be said to be against the medical interests of the participant. Competent adults can consent to procedures such as these that are against their medical interests, but when, if ever, should incompetent persons participate in such procedures? Legal approaches to decision‐making in the area of the medical care of incompetent persons are generally based on respect for the patient's autonomy, or protection (...) of her welfare, or some combination of the two. The limitations of these approaches become apparent upon examination of their application in this context. Societal interests are also used to justify the participation of the incompetent in procedures which are against their medical interests, for example, the societal interest in pursuing non‐therapeutic research on incompetents in order to benefit future incompetents. These types of approaches are implicit in much current policy and reform proposals on non‐therapeutic research, contributing to the disrespect for incompetent persons that is implicit in many research projects and much argument on the categorization of risks, and the repeated failure to consider the burdens imposed on incompetent persons in the interests of society. (shrink)

This paper examines how death is managed in a larger regional hospital within the Norwegian health‐care. The central focus of my paper concerns variations in how healthcare personnel enact death and handle the dead patient. Over several decades, modern standardised hospital death has come under critique in the western world. Such critique has resulted in changes in the standardisation of hospital deaths within Norwegian health‐care. In the wake of the hospice movement and with greater focus on palliative care, doors have (...) gradually been opened and relatives of the deceased are now more often invited to participate. I explore how the medical practice around death along with the procedure manual of post‐mortem care at Trondheim University Hospital has changed. I argue that in the late‐modern context, standardisation of hospital death is a multidimensional affair, embedded in a far more comprehensive framework than the depersonalised medico‐legal. In the late‐modern Norwegian hospital, interdisciplinary negotiation and co‐operation has allowed a number of different agendas to co‐exist, without any ensuing loss of the medical power holder's authority to broker death. I follow Mol's notion of praxiographic orientation of the actor–network approach while exploring this medical practice. (shrink)

This issue considers the ethics of a healthcare provider intervening into a patient’s genitalia, whether by means of cutting or surgery or by ‘mere’ touching/examination. Authors argue that the permissibility of such actions in the absence of a relevant medical emergency does not primarily turn on third-party judgments of expected levels of physical harm versus benefit, or on related notions such as extensiveness or invasiveness; rather, it turns on the patient’s own consent. To bolster this argument, attention is drawn (...) to the status of the genitals as ‘intimate’ anatomy—a status that is not fully erased by being in a medical context. In this editorial, we draw on the work of Talia Mae Bettcher on ‘intimate agency’ to explore why unconsented interventions into the genitalia may constitute a distinctive sort of personal violation compared to unconsented contact with various other parts of the human body. In their feature article, Marit van der Pijl and colleagues1 argue it is unethical for healthcare providers to perform unconsented episiotomies on persons in labour. In particular, they suggest that, outside of certain rare emergencies in which, for example, the person giving birth is incapacitated1 and the procedure cannot be delayed until consent becomes possible without introducing a significant risk of serious harm (call these ‘medically necessary’2 procedures), ‘presumed consent’ is the incorrect standard to apply. Instead, they stress that, especially when a proposed intervention involves a person’s genital, sexual or reproductive organs, the need to obtain their explicit consent in advance of proceeding must be honoured. As the authors note, the broader social significance of our genitalia—widely regarded as ‘private’ anatomy—is not erased by being in a medical context (see also 2–4). Boundaries must still be observed. Ethically, this ‘leaves a very small margin for error because invasion of these body parts …. (shrink)

This study explores how qualitative health researchers navigate the demands of medical research ethics committees in Germany where qualitative research is subject to approval only when it is conducted in medical contexts. We present the results of a grounded theory study to investigate qualitative health researchers’ experiences with procedural ethics and the strategies they adopt to navigate its demands. Our analysis revealed six dimensions of experience and three strategies adopted by researchers to navigate the demands of medical (...) research ethics committees. All participants agreed that research ethics is of high importance in qualitative health research, but strategies to navigate the demands of medical research ethics committees ranged from avoiding, and adapting, to transforming the procedures of ethics review. Based on our findings, we provide recommendations for improving the ethics review of qualitative health research. (shrink)

El prodigioso desarrollo de la ciencia y la tecnología médicas tiene una vertiente negativa que se expresa en la crisis de la atención de salud y de la relación médico-paciente. Los cambios en dicha relación, la mayor especialización y las nuevas posibilidades de tecnologías médicas llevan a reflexionar sobre las consecuencias y los efectos a largo alcance desde el punto de vista ético. Se realizó una revisión bibliográfica utilizando la base de datos EBSCO para determinar cómo repercute el proceso tecnológico (...) en el declinar de la relación médico-paciente en la especialidad de Neurología. Además se revisaron las revistas de Ética y Bioética en su formato impreso de los últimos 10 años. El prodigioso desarrollo de la ciencia y la tecnología médicas tiene una vertiente negativa que se expresa en la crisis de la atención de salud y de la relación médico-paciente. Los cambios en dicha relación, la mayor especialización y las nuevas posibilidades de tecnologías médicas llevan a reflexionar sobre las consecuencias y los efectos a largo alcance desde el punto de vista ético. Se realizó una revisión bibliográfica utilizando la base de datos EBSCO para determinar cómo repercute el proceso tecnológico en el declinar de la relación médico-paciente en la especialidad de Neurología. Además se revisaron las revistas de Ética y Bioética en su formato impreso de los últimos 10 años. (shrink)

Over the past 50 years, technical advances have taken place in medicine that have greatly increased the possibilities of life-prolonging intervention. The increased possibilities of intervening have brought along new ethical questions. Not everything that is technically possible is appropriate in a specific case: not everything that could be done should be done. In the 1980s, a new term was coined to indicate a class of inappropriate interventions: “medically futile treatment”. A debate followed, with contributions from the USA and several (...) western European countries. A similar debate later took place in Mediterranean countries, although with a different terminology. The purpose of this article is to provide an up-to-date and systematic analysis of the concept of futility, and to draw some conclusions on its operationalisation in medical practice. While the concept of “medical futility” in theory applies to all kinds of medical intervention that might be performed without being medically indicated—things such as certain medical screenings and cosmetic surgery—in practice the literature on “futility” deals only with life-saving and life-sustaining medical interventions. This article deals with this more limited application of the concept of “futility”. (shrink)

Approaches relying on fair procedures rather than substantive principles have been proposed for answering dilemmas in medical ethics and health policy. These dilemmas generally involve two questions: the epistemological (factual) question of which benefits an intervention will have, and the ethical (value) question of how to distribute those benefits. This article focuses on the potential of fair procedures to help address epistemological and factual questions in medicine, using the debate over antidepressant efficacy as a test case. In (...) doing so, it employs concepts from social epistemology such as testimonial injustice (bias resulting from the exclusion of evidence) and hermeneutical injustice (bias resulting from a prevailing discussion framework’s conceptual limitations). This article also explores the relevance of scientific consensus to determinations regarding medical evidence. (shrink)

In the present paper some formal aspects of the hypothesis-directed stage of medical diagnosis are studied and an algorithm of the diagnostic problem solving process is described. A given field of medical knowledge is represented by a pair of graphs. The sentences describing observed symptoms and signs constitute the data on which the algorithm is based. In the first step, the set of true judgments is determined and the hypotheses which are impossible in a given situation are rejected. (...) In consequence the model of knowledge is modified and working hypotheses are chosen. Further steps consist in selection of hypotheses in view of testing. The set of expected symptoms is determined and these are classified according to their diagnostic value. The process ends when the conditions of arriving at a useful solution of a given problem are fulfilled. The description of the algorithm is based on a clinical example. The model aims at reflecting some of the most important structural features of the diagnosis and does not embrace the probability evaluation problems. (shrink)

Institutions in France are not yet well prepared to respond to allegations of scientific misconduct. Following a serious allegation in late 1997. INSERM,* the primary organization for medical and health-related research in France, began to reflect on this subject, aided by scientists and jurists. The conclusions have resulted in establishing a procedure to be followed in cases of alleged misconduct, and also in reinforcing the application of good laboratory practices within each laboratory. Guidelines for authorship practices and scientific assessment (...) must also be considered. Even though each institution must remain responsible for responding to allegations of scientific misconduct within its doors, INSERM would like to see national, European, and international co-ordination about the methods of such response. (shrink)

The Faculty of Medicine and Health Sciences of the University of Sherbrooke has observed year after year, that certain students have not started and or completed their immunizations for common infectious diseases, which in effect makes them inadmissible for their clinical internships in healthcare establishments. The program administrators have posed a series of questions on the best way to proceed with these students as, a certain number remain reluctant to vaccination. They are often confronted with ethical dilemmas, are not necessarily (...) comfortable with their rights and responsibilities and wish to be guided throughout the process. This article aims to put forth a procedure that would be put in place to support the administrators in a way for them to obtain a more favorable vaccination level for all of their students in the most reasonable amount of time possible. The interest of the procedure is to move forward in a few simple and well defined steps that are supported by a rigorous legal framework, while respecting the rights and freedoms of the students. It is also designed so that it could be replicated in other faculties of medicine. (shrink)

Background The ideal basis of age estimation is considered to be a combination of clinical, skeletal and dental examinations. It is not easy to determine how forensic physicians take account of evidence-based data obtained from medical journals in their medical decision-making. The question of what is an ethically acceptable probability that adolescents are incorrectly considered to be over 18 has not been answered. Methods In a retrospective study over 1 year (2007), 498 files (for 141 female subjects and (...) 357 male subjects) regarding age assessment requested by the public prosecutor's office for purposes of criminal or asylum proceedings were reviewed. Chronological age was estimated from a combination of physical examination, radiographic examination of the left hand and determination of dental status. Results Estimates of chronological age in 498 subjects claiming to be 9–14 years old were incompatible with the alleged age in 356 (71%) when made by the forensic physician but in only 17 (3%) when based on data from published studies on age estimation in adolescents. Conclusions The present study suggests that in most cases the forensic physician ignores the adolescent's word. Medical mission and ethics imply a need to listen to the claims of persons in custody, whatever the risk of false claims. This situation should prompt forensic physicians to keep up with published data on estimating the age of adolescents. (shrink)

In this paper we analyse how the risks associated with research on transgenic plants are regulated in Sweden. The paper outlines the way in which pilot projects in the plant sciences are overseen in Sweden, and discusses the international and national background to the current regulatory system. The historical, and hitherto unexplored, reasons for the evolution of current administrative and legislative procedures in plant science are of particular interest. Specifically, we discuss similarities and differences in the regulation of medicine (...) and plant science, and we examine the tendency towards dichotomizing risk — focusing on social/ethical risks in medicine and biological risks in plant science. The context of this article is the Synpraxia research project, an inter-disciplinary program combining expertise in sciences and the humanities. (shrink)

As cognitive enhancement research advances, important ethical questions regarding individual autonomy and freedom are raised. Advocates of cognitive enhancement frequently adopt a procedural approach to autonomy, arguing that enhancers improve an individual’s reasoning capabilities, which are quintessential to being an autonomous agent. On the other hand, critics adopt a more nuanced approach by considering matters of authenticity and self-identity, which go beyond the mere assessment of one’s reasoning capacities. Both positions, nevertheless, require further philosophical scrutiny. In this paper, we investigate (...) the ethics of cognitive enhancement through the lenses of political and philosophical arguments about autonomy and freedom. In so doing, we contend that a substantive, relational account of individual autonomy offers a more holistic understanding of the ethical concerns of cognitive enhancement. (shrink)

Recent scientific developments, in particular advances in pharmacogenetics and molecular genetics, have given rise to numerous predictive procedures for detecting predispositions to diseases in patients. This knowledge, however, does not necessarily promise benign results for either patients or health care professionals. The aim of this volume is to analyse issues related to prediction and prognosis as a burgeoning field of medicine, which is revolutionizing the way we understand and approach diagnosis and treatment. Combining epistemic and ethical reflection with (...) class='Hi'>medical expertise on contemporary practice and research, an interdisciplinary group of international experts critically examine anticipatory medicine from various perspectives, including history of medicine, bioethics, theories of science, and health economics. The highly complex issues involved in medical prediction call for a far-reaching debate on the value and scope of foreknowledge. For example, which responsibilities and burdens arise when still healthy people learn of their predisposition to diseases? How should health care insurance reflect risky life styles? Is the increasing medicalization of life connected with prevention ethically sustainable and financially possible in the developing world? These and other related issues are the subject of this timely and important book, which not only serves as an introduction to the area, but also proposes many feasible solutions to the problems outlined. (shrink)

Futility is not a purely medical concept. Its subjective nature requires a balanced procedural approach where competing views can be aired and in which disputes can be resolved with procedural fairness. Law should play an important role in this process. Pure medical models of futility are based on a false claim of medical sovereignty. Procedural approaches avoid the problems of such claims. This paper examines the arguments for and against the adoption of a procedural approach to futility (...) determination. (shrink)

When medical assistance in dying (MAiD) was legalized in Canada in June 2016, the question of allowing decisionally capable persons to make advance requests in anticipation of later incapacity was reserved for further consideration during the mandatory parliamentary review originally scheduled to begin in June 2020 (but since delayed by COVID-19). In its current form the legislation does not permit such requests, since it stipulates that at the time at which the procedure is to be administered the patient must (...) give “express consent” to receiving it. Since express consent presupposes decisional capacity, this requirement rules out administering MAiD to a patient who has lost capacity. Amendments to the legislation passed by Parliament in March 2021 open the door slightly by allowing advance requests by patients after they have been approved for MAiD, if they fear losing capacity before the procedure can be administered. But this provision would apply only to patients whose natural death was deemed to be “reasonably foreseeable”, and would continue to exclude (a) requests made after diagnosis of a “grievous and irremediable medical condition” but in advance of approval for MAiD, and (b) requests made before such a diagnosis. My aim in this paper is twofold: to explore the ethical and legal issues concerning advance requests for MAiD, and to argue for expanding provision for such requests to include both of these further scenarios. (shrink)

Objective To examine medical students’ views on conscientious objection and controversial medical procedures.Methods Questionnaire study among Norwegian 5th and 6th year medical students.Results Five hundred and thirty-one of 893 students responded. Respondents object to a range of procedures not limited to abortion —notably euthanasia, ritual circumcision for boys, assisted reproduction for same-sex couples and ultrasound in the setting of prenatal diagnosis. A small minority would object to referrals for abortion. In the case of abortion, up (...) to 55% would tolerate conscientious refusals, whereas 42% would not. Higher proportions would tolerate refusals for euthanasia or ritual circumcision for boys.Discussion A majority of Norwegian medical students would object to participation in euthanasia or ritual circumcision for boys. However, in most settings, many medical students think doctors should not be able to refuse participation on grounds of conscience. A minority would accept conscientious refusals for procedures they themselves do not object to personally. Most students would not accept conscientious refusals for referrals.Conclusions Conscientious objection remains a live issue in the context of several medical procedures not limited to abortion. Although most would want a right to object to participation in euthanasia, tolerance towards conscientious objectors in general was moderate or low. (shrink)

In this paper, my goal is to use an epistemic injustice framework to extend an existing normative analysis of over-medicalization to psychiatry and thus draw attention to overlooked injustices. Kaczmarek has developed a promising bioethical and pragmatic approach to over-medicalization, which consists of four guiding questions covering issues related to the harms and benefits of medicalization. In a nutshell, if we answer “yes” to all proposed questions, then it is a case of over-medicalization. Building on an epistemic injustice framework, I (...) will argue that Kaczmarek’s proposal lacks guidance concerning the procedures through which we are to answer the four questions, and I will import the conceptual resources of epistemic injustice to guide our thinking on these issues. This will lead me to defend more inclusive decision-making procedures regarding medicalization in the DSM. Kaczmarek’s account complemented with an epistemic injustice framework can help us achieve better forms of medicalization. I will then use a contested case of medicalization, the creation of Premenstrual Dysphoric Disorder in the DSM-5 to illustrate how the epistemic injustice framework can help to shed light on these issues and to show its relevance to distinguish good and bad forms of medicalization. (shrink)

In 2017, Ukraine’s Parliament passed legislation establishing a single health benefit package for the entire population called the Programme of Medical Guarantees,‎ financed through general taxes and administered by a single national purchasing agency. This legislation was in line with key principles for financing universal health coverage. However, health professionals and some policymakers have been critical of elements of the reform, including its reliance on general taxes as the source of funding. Using qualitative methods and drawing on deliberative democratic (...) theory and criteria for procedural fairness, this study argues that the acceptance and sustainability of these reforms could have been strengthened by making the decision-making process fairer. It suggests that three factors limited the extent of stakeholders’ participation in this process: first, a perception among reformers that fast-paced decision-making was required because there was only a short political window for much needed reforms; second, a lack of trust among reformers in the motives, representativeness, and knowledge of some stakeholders; and third, an under-appreciation of the importance of dialogic engagement with the public. These findings highlight a profound challenge for policymakers. In retrospect, some of those involved in the reform’s design and implementation believe that a more meaningful engagement with the public and stakeholders who opposed the reform might have strengthened its legitimacy and durability. At the same time, the study shows how difficult it is to have an inclusive process in settings where some actors may be driven by unconstrained self-interest or lack the capacity to be representative or knowledgeable interlocutors. It suggests that investments in deliberative capital (the attitudes and behaviours that facilitate good deliberation) and in civil society capacity may help overcome this difficulty. (shrink)

The present article is aimed at substantiating the differentiation of the criminal procedure involving the disabled persons as well as at assessing some standards of protection of rights of the latter participants of the procedure, established in the Code of Criminal Procedure of the Republic of Lithuania. The provisions of the Constitutional Court of the Republic of Lithuania, given in the present article, enabled generalizing the following two aspects. The first aspect covers the substantiation of the criminal procedure relating to (...) the criminal acts that the physically or mentally disabled persons are suspected (accused) of and application of compulsory medical measures. Specific form of criminal procedure – procedure of application of compulsory medical measures – institution of criminal procedure, covering several closely interdependent legal norms, establishing particular legal specifics of investigation of criminal act and hearing, is established in the separate structural part (Chapter XXIX) of the Code of Criminal Procedure of the Republic of Lithuania. Moreover, though the criminal procedure relating to the acts that the physically or mentally disabled persons are suspected (accused) of is not governed in one place of the Code of Criminal Procedure, it is deemed to be a specific form of criminal procedure, since it constitutes particular related legal norms of criminal procedure, determining the exceptions of the general criminal procedure. The second aspect, related to the constitutional doctrine concerning the equality principle, enabled substantiating the specific legal regulation, established and applied to the disabled participants (suspected persons, accused persons, witnesses, aggrieved persons) in the Law on Criminal Procedure. (shrink)

Ethical medical decision-making for a child is generally navigated with various standards and models that have been developed to address its complexities. A case is presented of the parents’ refusal of a surgical procedure for their child considered by medical providers as essential and potentially lifesaving, along with the ethical debate of whether the parents’ decision was in the child’s best interest and whether their refusal reached a threshold to report and seek state intervention. Utilizing the best interest (...) standard and additional ethical decision-making tools, the ethicists helped the medical team accept the parents’ decision as reasonable, thus avoiding involvement with Child Protective Services. It is my goal to clarify the parents’ decision as reasonable and as honoring their child’s best interests and inherent dignity through the lens of Catholic anthropological and moral principles. These strengthen the ethical and moral arguments for the parents’ decision and the opposition to state intervention. (shrink)

In the past, a vast majority of medical assistance in dying patients were elderly patients with cancer who are not suitable for organ donation, making organ donation from such patients a rare event. However, more expansive criteria for MAiD combined with an increased participation of MAiD patients in organ donation is likely to drastically increase the pool of MAiD patients who can serve as organ donors. Previous discussions of ethical issues arising from these trends have not fully addressed difficulties (...) involved in separating decision to end one’s life from the one to donate one’s organs. However, realities of organ donation logistics and human decision making suggest that this separation can be extraordinary difficult. The need to maximise quality of donated organs complicates dying experience of the donor and is likely in tension with the dying experience the patient envisioned when first considering MAiD. Furthermore, the idea that patients will think about MAiD first, and only when firmly decided to end their life, consider organ donation, runs contrary to organ donation policies in some countries as well as end of life and everyday decision making. This opens the door for organ donation to serve as an incentive in MAiD decisions. Dispensing with the simplistic assumption that organ donation can never be a factor in MAiD decisions is, therefore, essential first step to properly addressing ethical issues at hand. (shrink)