Ethics in research can be broadly divided into two epistemic dimensions. One dimension focuses on bureaucratic procedures (i.e., procedural ethics), while the other focuses on contextually and culturally contested practice of ethics in research (i.e., ethics in practice). Researchers experience both dimensions distinctly in their qualitative research. The review of ethics in prospective research through bureaucratic procedures aims to measure compliance with documented requirements relating to research participants, data management, consent, and ensure researchers can demonstrate their ethical competence before they (...) commence their research. However, researchers often experience unanticipated ethical issues within the context of their research; sometimes ethics-related situations, including language sensitivity, cultural humility, and data processing experienced by researchers can be very different from what was included in bureaucratic procedures. In this study, phenomena related to research ethics in practice, as experienced by social scientists (n = 5) in their qualitative research, are hermeneutically explored and interpreted. The selected phenomena represent the researchers’ lived experiences regarding the practice of participant autonomy, specifically exploring participants’ right to withdraw from research. These phenomena are interpreted from the theoretical perspectives of situational relativism and self-determined autonomy. The interpreted phenomena reveal the current practices in ethical management of data collected from participants before their decision to withdraw from research (i.e., withdrawal data), are predominantly focused on tangible forms of data (i.e., the information that can easily be distinguished from other data), but ethical concerns associated with intangible forms of data are often neglected. The intangible forms of data are experiential knowing and understanding that include, feeling, emotion, courage, respect, celebration, anger, and the sense of being and belonging. The study recommends that researchers and research professionals should exercise ethical sensitivity and humility towards intangible forms of data collected during qualitative research when participants withdraw their consent. (shrink)

The right to withdraw from participation in research is recognized in virtually all national and international guidelines for research on human subjects. It is therefore surprising that there has been little justification for that right in the literature. We argue that the right to withdraw should protect research participants from information imbalance, inability to hedge, inherent uncertainty, and untoward bodily invasion, and it serves to bolster public trust in the research enterprise. Although this argument is not radical, (...) it provides a useful way to determine how the right should be applied in various cases. (shrink)

The purpose of this study is to examine the importance that real patients attach to their right to withdraw from an on-going feasibility randomised trial (RCT) evaluating types and timings of breast reconstruction (two parallel trials) following mastectomy for breast cancer. Our results show that, while some respondents appreciated that exercising the right to withdraw would defeat the scientific objective of the trial, some patients with a surgical preference consented only given the knowledge they could withdraw if they (...) were not allocated to their preferred treatment. (shrink)

The right to withdraw from research without penalty is well established around the world. However, it has been challenged in some corners of bioethics based on concerns about various harms—to participants, to scientific integrity, and to research bystanders—that may stem from withdrawal. These concerns have become particularly salient in emerging debates about the ethics of controlled human infection (CHI) studies in which participants are intentionally infected with pathogens, often in inpatient settings with extensive follow‐up. In this article, I (...) provide support for preserving the right to withdraw from research without penalty and demonstrate that it is also typically justified in the specific context of CHI studies. The right is well aligned with individual freedoms outside the research setting, where autonomous individuals are permitted to engage in behaviors that will foreseeably cause them harm; where they cannot be compelled to satisfy contracts for their services, nor penalized for failure to do so; and where their behavior is not constrained by public health authorities except in extreme circumstances. These freedoms are supported by U.S. law, as well as by ethical analysis that is more globally relevant. The problems associated with the right to withdraw, however, remain. The best approach to addressing them is not to restrict the right but rather to avoid initiating research when withdrawal would be especially problematic. If research proceeds, steps can still be taken to minimize participant withdrawal without infringing the right. Investigators can avoid participant surprise through informed consent focused on a study’s most burdensome aspects and promote study completion through financial incentives. Should participants nonetheless seek to withdraw, investigators may attempt to persuade them not to do so by encouraging consideration of the range of potential harms that may result. Researchers conducting CHI studies and other research from which withdrawal might be especially problematic should prepare for the possibility of participant withdrawal, respect participant requests to withdraw without penalty, and incorporate various measures to avoid such requests. (shrink)

In this paper I argue, against the current consensus, that the right to withdraw from research is sometimes alienable. In other words, research subjects are sometimes morally permitted to waive their right to withdraw. The argument proceeds in three major steps. In the first step, I argue that rights typically should be presumed alienable, both because that is not illegitimately coercive and because the general paternalistic motivation for keeping them inalienable is untenable. In the second step of the (...) argument, I consider three special characteristics of the right to withdraw, first that its waiver might be exploitative, second that research involves intimate bodily access, and third that it is irreversible. I argue that none of these characteristics justify an inalienable right to withdraw. In the third step, I examine four considerations often taken to justify various other allegedly inalienable rights: concerns about treating yourself merely as a means as might be the case in suicide, concerns about revoking all your future freedoms in slavery contracts, the resolution of coordination problems, and public interest. I argue that the motivations involved in these four types of situations do not apply to the right to withdraw from research. (shrink)

Most codes of research ethics and the practice of Institutional Review Boards (IRBs) allow human subjects to withdraw from research at any time. Consent forms invariably make a statement to this effect. So understood, a subject's right to withdraw from research is inalienable; she cannot, through her consent, surrender this right. Recently critics have argued that in selected circumstances the right to withdraw from research is alienable; subjects have the moral authority, through their consent, to obligate themselves (...) not to withdraw. Two kinds of cases have been cited to support this. In one case, there will be great benefits lost if subjects are permitted to withdraw before the completion of the protocol. In the other case, there will be harm to third parties if subjects withdraw from the experiment. In this paper, I defend the inalienability of the right to withdraw from research. I argue, first, that securing the desired benefits and avoiding the feared harms can be achieved without allowing waiver. Second, I show that permitting waiver in these cases does not guarantee that the ends sought will be achieved. And third, I articulate positive reasons for conceiving subjects' right to withdraw from research as inalienable. (shrink)

Consent forms given to potential subjects in research protocols typically contain a sentence like this: “You have a right to withdraw from this study at any time without penalty.” If you have ever served on an institutional review board or a research ethics committee, you have no doubt read such a sentence often. Moreover, codes of ethics governing medical research endorse such a right. For example, paragraph 24 of the Declaration of Helsinki says, “The subject should be informed (...) of the right… to withdraw consent to participate at any time without reprisal.” Similarly, section C of the Belmont Report says that subjects must be informed that they have the right “to withdraw at any time from the research.” And in section 46.116 of the Common Rule, it says that one of the elements of informed consent must include a statement that “the subject may discontinue participation at any time without penalty or loss of benefit to which the subject is otherwise entitled.”. (shrink)

Xenotransplantation pits clinical research ethics against public health needs because recipients must undergo long-term, perhaps life-long, surveillance for infectious diseases. This surveillance requirement is effectively an abrogation of the right to withdraw from a clinical trial. Ulysses contracts, which are advance directives for future care, may be an ethical mechanism by which to balance public health needs against limitation of individual rights.

Xenotransplantation is defined as “any procedure that involves the transplantation, implantation, or infusion into a human recipient of either live cells, tissues, or organs from a nonhuman animal source, or human body fluids, cells, tissues or organs that have had ex vivo contact with live nonhuman animal cells, tissues, or organs.” Xenotransplantation has been viewed by desperate patients and their surgeons as a solution to the problem of the paucity of human organs available for transplantation. Foes of xenotransplantation argue that (...) the use of animal organs degrades the human race and should be avoided.In this paper, we briefly review the cultural context of xenotransplantation and explore the infectious disease risk of xenotransplantation. The United States Code of Federal Regulations requires life-long surveillance of a xenotransplantation recipient due to the largely unknown risk of novel infectious disease transmitted across species, known as xenogeneic infectious disease. We argue that despite being in the interest of protecting the public health, the imposition of lifelong surveillance requirements on xenotransplant recipients effectively abrogates the right to withdraw from a clinical trial after the transplantation has taken place. Moreover, we argue that a waiver of the right to withdraw should be made explicit in the interest of full disclosure, out of respect for the research subject’s right of self-determination. (shrink)

The right to withdraw from participation in research is recognized in virtually all national and international guidelines for research on human subjects. It is therefore surprising that there has been little justification for that right in the literature. We argue that the right to withdraw should protect research participants from information imbalance, inability to hedge, inherent uncertainty, and untoward bodily invasion, and it serves to bolster public trust in the research enterprise. Although this argument is not radical, (...) it provides a useful way to determine how the right should be applied in various cases. (shrink)

Ethical guidelines commonly state that research subjects should have a right to withdraw consent to participate. According to the guidelines we have studied, this right applies also to research on biological samples. However, research conducted on human subjects themselves differs in important respects from research on biological samples. It is therefore not obvious that the same rights should be granted research participants in the two cases. This paper investigates arguments for and against granting a right to withdraw (...) consent to research on biobank samples. We conclude that (1) there are no explicit arguments for such a right in the guidelines we have studied, (2) the arguments against such a right are inconclusive, (3) considerations of autonomy, privacy, personal integrity, and trust in medical research provide sufficient reasons for granting a right to withdraw consent to research on biobank samples, (4) in certain cases, research participants should be allowed to waive this right. (shrink)

Most ethics committees which review research protocols insist that potential research participants reserve unconditional or absolute ‘right’ of withdrawal at any time and without giving any reason. In this paper, I examine what consent means for research participation and a sense of commitment in relation to this right to withdraw. I suggest that, once consent has been given (and here I am excluding incompetent minors and adults), participants should not necessarily have unconditional or absolute rights to withdraw.This (...) does not imply that that there should be a complete absence of rights, or, indeed, an abandonment of the right to withdraw. The point of this paper is to show that the supposed unconditional or absolute nature of these rights may be self‐defeating and so fail to respect the autonomy of participants. In addition, and on a more positive note, I suggest that, attaching certain conditions on the right to withdraw, may better respect the autonomy of these participants by underlining the idea that autonomy is more than mere whim or indifference to the fate of others. On the contrary, research staff are currently unable to ‘push’ participants, who may merely have logistical difficulties unrelated to the research itself, but who really want to stay the course, for fear of coercing them. Furthermore, researchers now try to ‘screen out’ people they think may be unreliable to protect the science of the study and so groups at risk of dropping out may be unfairly denied access to research treatments. I conclude that on‐going negotiation between the relevant parties could be on balance the only truly acceptable way forward but concede certain important limitations to take into account. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Convention on Human Rights and BiomedicineCouncil of EuropePreambleThe Member States of the Council of Europe, the other States and the European Community signatories hereto,Bearing in mind the Universal Declaration of Human Rights proclaimed by the General Assembly of the United Nations on 10 December 1948;Bearing in mind the (...) Convention for the Protection of Human Rights and Fundamental Freedoms of 4 November 1950;Bearing in mind the European Social Charter of 18 October 1961;Bearing in mind the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights of 16 December 1966;Bearing in mind the Convention for the Protection of Individuals with Regard to Automatic Processing of Personal Data of 28 January 1981;Bearing also in mind the Convention on the Rights of the Child of 20 November 1989;Considering that the aim of the Council of Europe is the achievement of a greater unity between its members and that one of the methods by which that aim is to be pursued is the maintenance and further realisation of human rights and fundamental freedoms;Conscious of the accelerating developments in biology and medicine;Convinced of the need to respect the human being both as an individual and as a member of the human species and recognising the importance of ensuring the dignity of the human being; [End Page 277]Conscious that the misuse of biology and medicine may lead to acts endangering human dignity;Affirming that progress in biology and medicine should be used for the benefit of present and future generations;Stressing the need for international co-operation so that all humanity may enjoy the benefits of biology and medicine;Recognising the importance of promoting a public debate on the questions posed by the application of biology and medicine and the responses to be given thereto;Wishing to remind all members of society of their rights and responsibilities;Taking account of the work of the Parliamentary Assembly in this field, including Recommendation 1160 (1991) on the preparation of a Convention on bioethics;Resolving to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine;Have agreed as follows:Chapter IGeneral provisionsArticle 1. (Purpose and object)Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.Each Party shall take in its internal law the necessary measures to give effect to the provisions of this Convention.Article 2. (Primacy of the human being)The interests and welfare of the human being shall prevail over the sole interest of society or science.Article 3. (Equitable access to health care)Parties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality. [End Page 278]Article 4. (Professional standards)Any intervention in the health field, including research, must be carried out in accordance with relevant professional obligations and standards.Chapter IIConsentArticle 5. (General rule)An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it.This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks.The person concerned may freely withdraw consent at any time.Article 6. (Protection of persons not able to consent)1. Subject to Articles 17 and 20 below, an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit.2. Where, according to law, a minor does not have the capacity to consent to an intervention, the intervention may only be carried out with the authorisation of his or her representative or an authority or a person or... (shrink)

Preclinical xenotransplantation research using genetically engineered pigs has begun to show some promising results and could one day offer a scalable means of addressing organ shortage. While it is a fundamental tenet of ethical human subject research that participants have a right to withdraw from research once enrolled, several scholars have argued that the right to withdraw from xenotransplant research should be suspended because of the public health risks posed by xenozoonotic transmission. Here, we present a comprehensive critical (...) evaluation of the claim that xenotransplant recipients should be required to waive their right to withdraw from lifelong biosurveillance. We conclude that if xenotransplantation requires participants to waive their right to withdraw, then clinical trials may not be justifiable, given the ethical and legal obstacles involved with doing so. Consequently, if clinical trials are permitted with a right to withdraw, then they may pose a significant public health risk. (shrink)

Clinical trials of xenotransplantation may begin early in the next decade, with kidneys from genetically modified pigs transplanted into adult humans. If successful, transplanting pig hearts into children with advanced heart failure may be the next step. Typically, clinical trials have a specified end date, and participants are aware of the amount of time they will be in the study. This is not so with XTx. The current ethical consensus is that XTx recipients must consent to lifelong monitoring. While this (...) presents challenges to the right to withdraw in the adult population, additional and unanswered questions also linger in the paediatric population. In paediatric XTx, parents or guardians consent not only to the initial treatment of the child but also to lifelong monitoring, thus making a decision whose consequences will remain present as the child develops the capacity for assent, and finally the capacity for informed consent or refusal. This article presents and evaluates unanswered paediatric ethical questions in regard to the right to withdraw from XTx follow-up in the paediatric population. (shrink)

Withdrawal is an act by which a member state of an international organization willingly terminates its membership. The right to withdraw from international organizations is explicitly mentioned in the constitutions of most of them and the circumstances regarding to the right of withdrawal vary depending on the organization. The purpose of this paper is to explain the right and procedures of withdrawal, and the reasons that result with the will of states to withdraw from (...) international organizations. For the realization of this research are used qualitative methods, based on the bibliography that is related to international organizations, with special emphasis with the right and procedures of the withdrawal of states from international organizations. Furthermore, some informations are also collected from the credible internet sources, which have valuable data about the withdrawals of states from international organizations and the reasons that result with such decisions. The results of the research have shown that since the appearance of international organizations until today, there were and there are decisions of states to withdraw from international organizations, coming from the reluctance of states to hand over to international organizations parts of their sovereignty. The conclusions of this paper aim to increase knowledge about the real meaning of the processes of withdrawals of states from international organizations. (shrink)

In “Assessing the Remedy: The Case for Contracts in Clinical Trials,” Sarah Edwards (2011) proposes that research participants acquire contractual obligations to investigators, thus opening the doo...

It is generally assumed in research ethics that research participants have an unconditional right to withdraw from research without any detriment or reprisal. This paper analyses this right in the context of biobank research and argues that the traditional shape of the right in clinical research can be modified in biobank research without incurring significant ethical cost. The paper falls in three parts. The first part is a brief explication of the philosophical justification of the right (...) to withdraw. The second part presents a number of extant criticisms of the right. And the third and final part argues that although a right to withdraw is crucial in relation to biobank research, such a right has to be specified in a different way to the similar right in relation to clinical research. (shrink)

In spite of ethical analyses assimilating the palliative deactivation of pacemakers to commonly accepted withdrawings of life-sustaining therapy, many clinicians remain ethically uncomfortable with pacemaker deactivation at the end of life. Various reasons have been posited for this discomfort. Some cardiologists have suggested that reluctance to deactivate pacemakers may stem from a sense that the pacemaker has become part of the patient’s “self.” The authors suggest that Daniel Sulmasy is correct to contend that any such identification of the pacemaker is (...) misguided. The authors argue that clinicians uncomfortable with pacemaker deactivation are nevertheless correct to see it as incompatible with the traditional medical ethics of withdrawal of support. Traditional medical ethics is presently taken by many to sanction pacemaker deactivation when such deactivation honors the patient’s right to refuse treatment. The authors suggest that the right to refuse treatment applies to treatments involving ongoing physician agency. This right cannot underwrite patient demands that physicians reverse the effects of treatments previously administered, in which ongoing physician agency is no longer implicated. The permanently indwelling pacemaker is best seen as such a treatment. As such, its deactivation in the pacemaker-dependent patient is best seen not as withdrawal of support but as active ending of life. That being the case, clinicians adhering to the usual ethical analysis of withdrawal of support are correct to be uncomfortable with pacemaker deactivation at the end of life. (shrink)

This article, prompted by an extended essay published in the Journal of Medical Ethics by Charles Foster, and the current controversy surrounding the case of Vincent Lambert, analyses the legal and ethical arguments in relation to the withdrawal of life-sustaining treatment from patients with prolonged disorders of consciousness. The article analyses the legal framework through the prism of domestic law, case-law of the European Court of Human Rights and the Convention on the Rights of Persons with Disabilities, and examines (...) the challenge to the ethical consensus made by Foster. It concludes that the right approach remains a version of the approach that has prevailed for the last 25 years since the decision in Airedale NHS Trust v Bland[1993] AC 789, refined to reflect that that there is now, and rightly, a much more limited place for judgments made about the ‘burden’ of treatment or the quality of life enjoyed by the person made on the basis of assumptions about that person as a category as opposed to investigation of that person as an individual human being. (shrink)

In recent years consumer law has come more and more into the focus of legislation within the EU. One of the EU’s key objectives, completing the final stage of the internal market, is to place consumer rights in the centre of it. Following the adaption of various consumer law measures for some decades, the EU has undertaken a thorough review of its consumer acquis. After years of consultations, the Consumer Rights Directive 2011/83/ EU, which was supposed to set new standards (...) of consumer protection, came into force and will have to be implemented by the Member States by 13 December, 2013. Renouncing its principal practice of minimum harmonisation in the area of consumer law, i.e. allowing Member States on the basis of Directives to adopt more protective rules, the EU legislator now turned to a targeted full harmonisation approach by means of the Consumer Rights Directive, aiming at increasing the consumer protection across the EU by bringing together the currently distinct laws for distance selling and off-premises contracts as well as other types of consumer contracts in a single instrument. The article briefly introduces the background of the Directive and discusses the shift in means of harmonisation concepts. Then, it analyses the scope, concepts and content of the Directive, which mainly brings considerable reforms in the areas of information requirements and the right of withdrawal. Taking into account the Directive’s improvements and shortcomings, conclusions are drawn that further harmonisation and a uniform and universally applicable set of European consumer rights are needed. (shrink)

In Japan, terminating life-sustaining treatment in non-terminal patients is legally and ethically problematic given the lack of legal regulations regarding the termination of LST, including dialysis treatment. This article describes an ethically problematic case that happened at a hospital in Tokyo in March 2019, in which a patient died after a physician withdrew kidney dialysis upon the patient’s request. Most national newspapers in Japan reported the case extensively and raised the question of ethical and legal permissibility of withdrawing dialysis treatment (...) from non-terminal patients. In this article, we first examine the case within the current policy framework in Japan and then discuss how Japan can improve its end-of-life practice, focusing specifically on the patient’s right to self-determination and treatment refusal. We recommend that policymakers consider legalizing the termination of LST and the patient’s right to refuse treatment based on the principle of respect for autonomy. (shrink)

Extracorporeal membrane oxygenation (ECMO) is typically viewed as a time-limited intervention—a bridge to recovery or transplant—not a destination therapy. However, some patients with decision-making capacity request continued ECMO support despite a poor prognosis for recovery and lack of viability as a transplant candidate. In response, critical care teams have asked for guidance regarding the ethical permissibility of unilateral withdrawal over the objections of a capacitated patient. In this article, we evaluate several ethical arguments that have been made in favor (...) of withdrawal, including distributive justice, quality of life, patients’ rights, professional integrity, and the Equivalence Thesis. We find that existing justifications for unilateral withdrawal of ECMO support in capacitated patients are problematic, which leads us to conclude that either: (1) additional ethical arguments are necessary to defend this approach or (2) the claim that it is not appropriate to use ECMO as a destination therapy should be questioned. (shrink)

In a recent paper, Charles Foster argued that the epistemic uncertainties surrounding prolonged disorders of consciousness make it impossible to prove that the withdrawal of life-sustaining treatment can be in a patient’s best interests and, therefore, the presumption in favour of the maintenance of life cannot be rebutted. In the present response, I argue that, from a legal perspective, Foster has reached the wrong conclusion because he is asking the wrong question. According to the reasoning in two leading cases (...) —Bland and James —the principle of respect for autonomy creates a persuasive presumption against treatment without consent. Therefore, it is the continuation of treatment that requires justification, rather than its withdrawal. This presumption also works as the tiebreaker determining that treatment should stop if there is no persuasive evidence that its continuation is in the best interests of the patient. The presumption in favour of the maintenance of life, on the other hand, should be understood as an evidential presumption on a factual issue that is assumed to be true if unchallenged. However, the uncertainties regarding PDOC actually give reasons for displacing this evidential presumption. Consequently, decision-makers will have to weigh up the pros and cons of treatment having the presumption against treatment without consent as the tiebreaker if the evidence is inconclusive. In conclusion, when the right question is asked, Foster’s argument can be turned on its head and uncertainties surrounding PDOC weigh in to justify the interruption of treatment in the absence of compelling contrary evidence. (shrink)

Since 1991, sperm donors in the UK have had the legal right to withdraw consent for the use of their sperm in fertility treatment. This has the potential to adversely affect patients. It may mean that previous recipients of a donor’s sperm cannot have further children who are full biological siblings to an existing child, and that embryos created from the donor’s sperm and a patient’s eggs must be destroyed.

The question a judge has to ask in deciding whether or not life-sustaining treatment should be withdrawn is whether the continued treatment is lawful. It will be lawful if it is in the patient’s best interests. Identifying this question gives no guidance about how to approach the assessment of best interests. It merely identifies the judge’s job. The presumption in favour of the maintenance of life is part of the job that follows the identification of the question.The presumption is best (...) regarded as a presumption of law. It has long been recognised as part of the way in which the English law discharges its obligations under Article 2 of the European Convention on Human Rights. But even if it is a ‘mere’ evidential presumption it cannot, on the facts of most cases involving applications for the withdrawal of life-sustaining treatment from patients in prolonged disorders of consciousness, be rebutted. (shrink)

In the United Kingdom women have access to termination of pregnancy for maternal reasons until 24 weeks’ completed gestation, but it is accepted practice for children born at or beyond 25 weeks’ gestation to be treated according to the child’s perceived best interests even if this is not in accordance with parental wishes. The authors present a case drawn from clinical practice which highlights the discomfort that parents may feel about such an abrupt change in their rights over their child, (...) and argue that parents should have greater autonomy over treatment decisions regarding their prematurely born children. (shrink)

In an analysis of artificially intelligent systems for medical diagnostics and treatment planning we argue that patients should be able to exercise a right to withdraw from AI diagnostics and treatment planning for reasons related to (1) the physician’s role in the patients’ formation of and acting on personal preferences and values, (2) the bias and opacity problem of AI systems, and (3) rational concerns about the future societal effects of introducing AI systems in the health care sector.

Ectogenesis, or the use of an artificial womb to allow a foetus to develop, will likely become a reality within a few decades, and could significantly affect the abortion debate. We first examine the implications for Judith Jarvis Thomson’s violinist analogy, which argues for a woman’s right to withdraw life support from the foetus and so terminate her pregnancy, even if the foetus is granted full moral status. We show that on Thomson’s reasoning, there is no right to (...) the death of the foetus, and abortion is not permissible if ectogenesis is available, provided it is safe and inexpensive. This raises the question of whether there are persuasive reasons for the right to the death of the foetus that could be exercised in the context of ectogenesis. Eric Mathison and Jeremy Davis have examined several arguments for this right, doubting that it exists, while Joona Räsänen has recently criticized their reasoning. We respond to Räsänen’s analysis, concluding that his arguments are unsuccessful, and that there is no right to the death of the foetus in these circumstances. (shrink)

A growing number of healthcare practices implicate serious moral concerns for growing numbers of healthcare providers. Social, legal, and medical developments, including abortion, contraception, euthanasia, withdrawal of feeding, blood transfusions, organ transplants, and routine autopsies, have put healthcare providers in the vortex of some of society's most controversial moral dilemmas.

The international media recently reported the case of Eluana Englaro, a 38-year-old woman in a permanent vegetative state who died in February 2009 following withdrawal of her feeding tube. At the time of her death, she had been unconscious for 17 years. For many years, her father had been seeking permission to allow her to die. His request was rejected by the courts several times on different grounds, until the Italian Supreme Court finally granted it. The case caused considerable (...) political turmoil. The government, the president, the Constitutional Court, and the European Court of Human Rights got involved. This paper gives an account of the history of the case, enriched by personal communications with the people directly involved and a memoir by the father of Eluana. (shrink)

Over 1000 companies have either curtailed or else completely ceased operations in Russia as a response to its invasion of Ukraine, a mass corporate exodus of a speed and scale which we’ve never seen. While corporate withdrawal appears to have considerable public support, it’s not obvious that it has done anything to hamper the Russian war effort, nor is it clear what the long-run effects of corporate withdrawal as a regularised response to war might be. Given this, it’s (...) important the evaluate the ethical merits of such a response. In this paper I critique what I take to be the two most common arguments given in favour of voluntary corporate withdrawal, which I label ‘the instrumental argument’ and ‘the clean hands argument’ respectively. After illustrating their shortcomings, I reframe corporations’ predicament as a ‘spattered hands’ case—one where they may do good by remaining in a war-waging state, but where they contribute indirectly to grave wrongdoing by doing so. Drawing on ideas from the ‘Business for Peace’ and ‘Business and Human Rights’ literature, I highlight the potentially positive role of corporate presence within war-waging countries, before highlighting four considerations which corporations ought to bear in mind when determining whether to withdraw, or whether it is the lesser evil to stay and to let their hands be spattered. (shrink)

The right to refuse medical intervention is well established, but it remains unclear how best to respect and exercise this right in life support. Contemporary ethical guidelines for critical care give ambiguous advice, largely because they focus on the moral equivalence of withdrawing and withholding care without confronting the very real differences regarding who is aware and informed of intervention options and how patient values are communicated and enacted. In withholding care, doctors typically withhold information about interventions judged (...) too futile to offer. They thus retain greater decision-making burden and face weaker obligations to secure consent from patients or proxies. In withdrawing care, there is a clearer imperative for the doctor to include patients in decisions, share information and secure consent, even when continued life support is deemed futile. How decisions to withhold and withdraw life support differ ethically in their implications for positive versus negative interpretations of patient autonomy, imperatives for consent, definitions of futility and the subjective evaluation of benefits and burdens of life support in critical care settings are explored. Professional reflection is required to respond to trends favouring a more positive interpretation of patient autonomy in the context of life support decisions in critical care. Both the bioethics and critical care communities should investigate the possibilities and limits of growing pressure for doctors to disclose their reasoning or seek patient consent when decisions to withhold life support are made. (shrink)

It is commonly said that patients have no right to demand that treatment must be continued when medical carers believe it is “futile” to continue it. There are certainly many judicial statements to this effect, some of which are quoted in this paper. However, there are various ways that courts can intervene, even if they do not order directly that treatment must be provided or continued. First, patients or their representatives may argue the process of decision making was unfair (...) or that they were unfairly discriminated against when treatment has been refused. To date, these arguments have met with limited success so far as enabling patients to have treatment provided or continued against medical advice. More recently, however, some patients have challenged the lawfulness of a proposed treatment regime by advancing human rights arguments, based in turn on a broader aspect of patients’ “best interests” than best medical interests. (shrink)

It is commonly said that patients have no right to demand that treatment must be continued when medical carers believe it is “futile” to continue it. There are certainly many judicial statements to this effect, some of which are quoted in this paper. However, there are various ways that courts can intervene, even if they do not order directly that treatment must be provided or continued. First, patients or their representatives may argue the process of decision making was unfair (...) or that they were unfairly discriminated against when treatment has been refused. To date, these arguments have met with limited success so far as enabling patients to have treatment provided or continued against medical advice. More recently, however, some patients have challenged the lawfulness of a proposed treatment regime by advancing human rights arguments, based in turn on a broader aspect of patients’ “best interests” than best medical interests. (shrink)

In 1992, Eluana Englaro was involved in a car accident in Italy that eventually left her in a permanent vegetative state requiring artificial nutrition and hydration. This paper, after briefly reviewing Eluana's case, gives a chronicle of Eluana last months until her death on 9 February 2009, and discusses the right-to-die controversy in Italy. For many years, Mr Englaro, Eluana's father, would litigate to enforce what he considered to be his daughter's wish to discontinue life-prolonging treatment. In July 2008, (...) the Court of Appeal of Milan has given its authorisation for artificial life support to be withdrawn. This ruling sparked a crusade, led by the government and the Vatican, against the court and Eluana's father, which included insinuations that the latter was murdering his daughter. Public opinion has overwhelmingly been sympathetic to the father's difficult decision, in stark contrast to the reactionary stance taken by the government. With the notable advances of medicine, doctors are increasingly faced with ethical issues. The vegetative state is just one of the many clinical conditions that obligate health professionals to reflect on ethical matters. The withdrawal of life-supporting care, and of artificial nutrition and hydration in particular in permanent vegetative state patients remains a measure which violates a tradition and a consolidated practice. It was thus inevitable that it would create great controversy. We should work towards making a decision process that ensures that continuation or suspension of artificial nutrition and hydration follows an explicit procedure, promoting the sharing and respect of the diverse moral responsibility of family members, nursing and medical staff. (shrink)

The chief executive of the Law Society proposes that the Mental Capacity Bill is a progressive initiative enhancing personal autonomy. Laing replies to this by showing that the Bill, for from enhancinging personal autonomy explodes it by inviting homicide by unaccountable third parties, allowing non-therapeutic research and organ-removal without consent and creating a secret and unaccountable court with a lethal power over the vulnerable incapacitated.

Young adults in Europe have more difficulty than previous generations to maintain or improve on their parents’ housing situation. Recommodification, financialisation and the withdrawal of the state as housing provider have transformed housing markets and affected the housing situation of young people. By drawing on various data sources, especially on the EU-Statistics on Income and Living Conditions, I aim to present a differentiated assessment and comparison of current housing conditions and problems in Europe with a focus on young people. (...) I argue that a rights-based housing strategy with an explicit intergenerational justice perspective is a promising approach to tackle the housing crisis in a way that meets the housing needs of young people. (shrink)

In this article the author analyses specific reservations that are being done to the international documents for the protection of human rights and whether Vienna Convention on the Law of the Treaties applies to those human rights treaties or not. Also, the author analyses if reservations, which are incompatible with object and purpose of the treaty, can be done or not and what consequences they might bring. For this reason the author describes the practice of the state members under the (...) Convention on the Elimination of All Forms of Discrimination against Women and International Covenant on Civil and Political Rights. These treaties were chosen not only because they laid down the most significant principles of the protection of human rights, but also due to the great number of reservations made to the fundamental provisions of these treaties. The importance of the topic is that in the human rights treaties the implementation of Vienna Convention on the Law of Treaties provisions on reservations brings several issues, even though on theoretical level the regulation of reservations seems unproblematic. Firstly, there is a major group of states (especially Islamic countries, which base their explanation on the incompatibility with Islamic law), which want to become parties to the treaties that protect human rights and make reservations to fundamental provisions of them at the same time. Secondly, the state parties that make objections to the reservations have to decide if the reservation is compatible with the object and purpose of the treaty or not. The regulation that is laid down in Vienna Convention on the Law of Treaties creates difficulties for the state parties and withdrawal of reservations seems to be more problematic in reality than it is in theory. In order to find the solutions for the above mentioned issues, the author analyses whether the Vienna Convention on the Law of the Treaties regime works properly within the mechanism of making reservations to the human rights treaties or not, what reservations should be kept invalid under the human rights treaties and what could be the solutions for the most effective protection from the invalid reservations that address fundamental rights of human beings in the human rights law. (shrink)

Objective Although patients exercise greater autonomy than in the past, and shared decision making is promoted as the preferred model for doctor-patient engagement, tensions still exist in clinical practice about the primary locus of decision-making authority for complex, scarce, and resource-intensive medical therapies: patients and their surrogates, or physicians. We assessed physicians’ attitudes toward decisional authority for adult venoarterial extracorporeal membrane oxygenation (VA-ECMO), hypothesizing they would favor a medical locus. Design, Setting, Participants A survey of resident/fellow physicians and internal medicine (...) attendings at an academic medical center, May to August 2013. Measurements We used a 24-item, internet-based survey assessing physician-respondents’ demographic characteristics, knowledge, and attitudes regarding decisional authority for adult VA-ECMO. Qualitative narratives were also collected. Main Results A total of 179 physicians completed the survey (15 percent response rate); 48 percent attendings and 52 percent residents/ fellows. Only 32 percent of the respondents indicated that a surrogate’s consent should be required to discontinue VA-ECMO; 56 percent felt that physicians should have the right to discontinue VA-ECMO over a surrogate’s objection. Those who self-reported as “knowledgeable” about VA-ECMO, compared to those who did not, more frequently replied that there should not be presumed consent for VA-ECMO (47.6 percent versus 33.3 percent, p = 0.007), that physicians should have the right to discontinue VAECMO over a surrogate’s objection (76.2 percent versus 50 percent, p = 0.02) and that, given its cost, the use of VA-ECMO should be restricted (81.0 percent versus 54.4 percent, p = 0.005). Conclusions Surveyed physicians, especially those who self-reported as knowledgeable about VA-ECMO and/or were specialists in pulmonary/ critical care, favored a medical locus of decisional authority for VA-ECMO. VA-ECMO is complex, and the data may (1) reflect physicians’ hesitance to cede authority to presumably less knowledgeable patients and surrogates, (2) stem from a stewardship of resources perspective, and/or (3) point to practical efforts to avoid futility and utility disputes. Whether these results indicate a more widespread reversion to paternalism or a more circumscribed usurping of decisional authority occasioned by VA-ECMO necessitates further study. (shrink)

Translator's Abstract: The right to have rights was never a right to be had. Hannah Arendt's famous formulation of the most elementary right of all, the right to participate in the definition of rights, is not a description of a given right that belongs to one or the other form of law, but an indictment of a deficit in the construction of legality on the basis of the right to withdraw legal protection from members (...) of a community, and therefore to refuse rights. The one and only human right thus turns out to be ungrounded in anything but the idea of its being had: a " property right " that traces back to the legal, philosophical and linguistic definitions of " one's own " since antiquity. Only the gift of the incalculable and of that which cannot possibly be legitimated can ground the autarchic self-relation of having: ungrounded in the rationally organized nature of any given, possessing the right to membership in a political community turns out to be permission to freely transfer this possession to another, without expectation of a return. (shrink)

Many of the demands being voiced for a "humanizing" of health care center on the public's concern that they have some say In determining what happens to the individual in health care institutions. The essays in this volume address fundamental questions of conflicts of rights and autonomy as they affect four selected, controversial areas in health care ethics: the Limits of Professional Autonomy, Refusing! Withdrawing from Treatment, Electing "Heroic" Measures, and Advancing Reproductive Technology. Each of the topics is addressed in (...) such a way that it includes an examination of the locus of responsibility for ethical decision making. The topics are not intended to exhaustively review those areas of health care provision where conflicts of rights might be said to be an issue. Rather they constitute an examination of the difficulties so often encountered in these specific contexts that we hope will illuminate similar conflicts in other problem areas by raising the level of the reader's moral awareness. Many books in bioethics appeal only to a limited audience in spite of the fact that their subject matter is of deep personal concern to everyone. In part, this is true because they are frequently written from the perspective of a single discipline or a single profession. As a result, one is often left with the impression that such a book views the philosophical, historical, and! or theological problems as essentially indifferent to clinical, legal, and! or policy-making problems. (shrink)

§ . As a corollary to the proposition that all institutions must be subordinated to the law of equal freedom, we cannot choose but admit the right of the citizen to adopt a condition of voluntary outlawry. If every man has freedom to do all that he wills, provided he infringes not the equal freedom of any other man, then he is free to drop connection with the state - to relinquish its protection and to refuse paying toward its (...) support. It is self evident that in so behaving he in no way trenches upon the liberty of others, for his position is a passive one, and while passive he cannot become an aggressor. It is equally self evident that he cannot be compelled to continue one of a political corporation without a breach of the moral law, seeing that citizenship involves payment of taxes; and the taking away of a man's property against his will is an infringement of his rights. Government being simply an agent employed in common by a number of individuals to secure to them certain advantages, the very nature of the connection implies that it is for each to say whether he will employ such an agent or not. If anyone of them determines to ignore this mutual safety confederation, nothing can be said except that he loses all claim to its good offices and exposes himself to the danger of maltreatment - a thing he is quite at liberty to do if he likes. He cannot be coerced into political combination without a breach of the law of equal freedom; he can withdraw from it without committing any such breach, and he has therefore a right so to withdraw. (shrink)

This article reveals the implications that made the Lithuanian Council to step aside allowing the Temporary Government to continue the further process of restitution of Lithuania, immediately after becoming the central constitutional state institution. Prior to that, Lithuanian (State) Council had managed to declare the independence of Lithuania on the 16th of February 1918 under extremely difficult political circumstances and established the statehood on the 2nd of November of the same year. Under the will of the Vilnius conference of Lithuania (...) that took place in autumn of 1917, all Lithuanian political streams of these days have been represented in the Lithuanian Council. However, the Council itself has not managed to save the representative ability by agreeing with the resignation of its left element and by continuing the expansion and distance from the community of Lithuania. The Council has become an institution representing the right wing of the Lithuanian community which could not ensure any greater support. (shrink)