About ten years ago, reports of lab-grown “mini brains” or “brains in a dish” appeared in the media, falling somewhere between the curious and the alarming. The trigger of these reports was a new method to grow three-dimensional neural tissue from human stem cells that recapitulates, to some degree, the early development of brain tissue. Despite their relatively small size and other limitations, such model systems capture in part the structure and functions of regions of the human brain and can (...) also be combined to form so-called assembloids. (shrink)

Cerebral organoid models in-of-themselves are considered as an alternative to research animal models. But their developmental and biological limitations currently inhibit the probability that organoids can fully replace animal models. Furthermore, these organoid limitations have, somewhat ironically, brought researchers back to the animal model via xenotransplantation, thus creating hybrids and chimeras. In addition to attempting to study and overcome cerebral organoid limitations, transplanting cerebral organoids into animal models brings an opportunity to observe behavioral changes in the animal itself. Traditional animal (...) ethics frameworks, such as the well-known three Rs (reduce, refine, and replace), have previously addressed chimeras and xenotransplantation of tissue. But these frameworks have yet to completely assess the neural-chimeric possibilities. And while the three Rs framework was a historical landmark in animal ethics, there are identifiable gaps in the framework that require attention. The authors propose to utilize an expanded three Rs framework initially developed by David DeGrazia and Tom L. Beauchamp, known as the Six Principles (6Ps). This framework aims to expand upon the three Rs, fill in the gaps, and be a practical means for assessing animal ethical issues like that of neural-chimeras and cerebral organoid xenotransplantation. The scope of this 6Ps application will focus on two separate but recent studies, which were published in 2019 and 2020. First, they consider a study wherein cerebral organoids were grown from donors with Down syndrome and from neurotypical donors. After these organoids were grown and studied, they were then surgically implanted into mouse models to observe the physiological effects and any behavioral change in the chimera. Second, they consider a separate study wherein neurotypical human embryonic stem cell-derived cerebral organoids were grown and transplanted into mouse and macaque models. The aim was to observe if such a transplantation method would contribute to therapies for brain injury or stroke. The authors place both studies under the lens of the 6Ps framework, assess the relevant contexts of each case, and provide relevant normative conclusions. In this way, they demonstrate how the 6Ps could be applied in future cases of neural-chimeras and cerebral organoid xenotransplantation. (shrink)

The generation of three-dimensional cerebral organoids from human-induced pluripotent stem cells (hPSC) has facilitated the investigation of mechanisms underlying several neuropsychiatric disorders, including stress-related disorders, namely major depressive disorder and post-traumatic stress disorder. Generating hPSC-derived neurons, cerebral organoids, and even assembloids (or multi-organoid complexes) can facilitate research into biomarkers for stress susceptibility or resilience and may even bring about advances in personalized medicine and biomarker research for stress-related psychiatric disorders. Nevertheless, cerebral organoid research does not come without its own set (...) of ethical considerations. With increased complexity and resemblance to in vivo conditions, discussions of increased moral status for these models are ongoing, including questions about sentience, consciousness, moral status, donor protection, and chimeras. There are, however, unique ethical considerations that arise and are worth looking into in the context of research into stress and stress-related disorders using cerebral organoids. This paper provides stress research-specific ethical considerations in the context of cerebral organoid generation and use for research purposes. The use of stress research as a case study here can help inform other practices of in vitro studies using brain models with high ethical considerations. (shrink)

Non-human animal chimeras, containing human neurological cells, have been created in the laboratory. Despite a great deal of debate, the status of such beings has not been resolved. Under normal definitions, such a being could either be unconventionally human or abnormally animal. Practical investigations in animal sentience, artificial intelligence, and now chimera research, suggest that such beings may be assumed to have no legal rights, so philosophy could provide a different answer. In this vein, therefore, we can ask: What would (...) a chimera, if it could think, think about? Thinking is used to capture the phenomena of a novel, chimeric being perceiving its terrible predicament as no more than a laboratory experiment. The creation of a thinking chimera therefore forces us to reconsider our assumptions about what makes human beings (potentially) unique (and other sentient animals different), because, as such, a chimera’s existence bridges our social and legal expectations about definitions of human and animal. Society has often evolved new social norms based on different kinds of (ir)rational contrivances; the imperative of non-contradiction, which is defended here, therefore requires a specific philosophical response to the rights of a thinking chimeric being. (shrink)

We are sometimes unsure of the moral status of our relationships with other entities. Recent case studies in this uncertainty include our relationships with artificial agents (robots, assistant AI, etc.), animals, and patients with “locked-in” syndrome. Do these entities have basic moral standing? Could they count as true friends or lovers? What should we do when we do not know the answer to these questions? An influential line of reasoning suggests that, in such cases of moral uncertainty, we need meta-moral (...) decision rules that allow us to either minimize the risks of moral wrongdoing or improve the choice-worthiness of our actions. One particular argument adopted in this literature is the “risk asymmetry argument,” which claims that the risks associated with accepting or rejecting some moral facts may be sufficiently asymmetrical as to warrant favoring a particular practical resolution of this uncertainty. Focusing on the case study of artificial beings, this article argues that this is best understood as an ethical-epistemic challenge. The article argues that taking potential risk asymmetries seriously can help resolve disputes about the status of human–AI relationships, at least in practical terms (philosophical debates will, no doubt, continue); however, the resolution depends on a proper, empirically grounded assessment of the risks involved. Being skeptical about basic moral status, but more open to the possibility of meaningful relationships with such entities, may be the most sensible approach to take. (shrink)

This paper will ask whether the legal status presently afforded to nonhuman animals ought to influence regulatory debates concerning human cerebral organoids. The New York Courts recently refused to grant a writ of habeas corpus to Happy the Elephant as she was property rather than a legal person while at the same time accepting that she is a moral patient deserving of rights protection. An undesirable situation has therefore arisen in which the law holds a being with moral status to (...) be incapable of benefitting from legal redress due to their legal status as property.The author argues that this is something that we ought to avoid when designing the regulatory framework which will govern the use of human cerebral organoids. Yet, a difference exists in that, whereas the judges already accept Happy is a moral patient, there is presently no consensus around the moral status of organoids. This paper will consider whether human cerebral organoids have passed the moral threshold of sentience. If they have, or are close to doing so, regulators ought to consider their legal status in advance so as to ensure that adequate limitations are placed on this usage so as to avoid unethical practices. (shrink)

The possibility of consciousness in human brain organoids is sometimes viewed as determinative in terms of the moral status such entities possess, and, in turn, in terms of the research protections such entities are due. This commonsense view aligns with a prominent stance in neurology and neuroscience that consciousness admits of degrees. My paper outlines these views and provides an argument for why this picture of correlating degrees of consciousness with moral status and research protections is mistaken. I then provide (...) an alternative account of the correlation between moral status and consciousness, and consider the epistemic ramifications for research protections of this account. (shrink)

Human brain organoids (HBOs) are three-dimensional biological entities grown in the laboratory in order to recapitulate the structure and functions of the adult human brain. They can be taken to be novel living entities for their specific features and uses. As a contribution to the ongoing discussion on the use of HBOs, the authors identify three sets of reasons for moral concern. The first set of reasons regards the potential emergence of sentience/consciousness in HBOs that would endow them with a (...) moral status whose perimeter should be established. The second set of moral concerns has to do with an analogy with artificial womb technology. The technical realization of processes that are typically connected to the physiology of the human body can create a manipulatory and instrumental attitude that can undermine the protection of what is human. The third set concerns the new frontiers of biocomputing and the creation of chimeras. As far as the new frontier of organoid intelligence is concerned, it is the close relationship of humans with new interfaces having biological components capable of mimicking memory and cognition that raises ethical issues. As far as chimeras are concerned, it is the humanization of nonhuman animals that is worthy of close moral scrutiny. A detailed description of these ethical issues is provided to contribute to the construction of a regulative framework that can guide decisions when considering research in the field of HBOs. (shrink)

The rise of neurotechnologies, especially in combination with artificial intelligence (AI)-based methods for brain data analytics, has given rise to concerns around the protection of mental privacy, mental integrity and cognitive liberty – often framed as “neurorights” in ethical, legal, and policy discussions. Several states are now looking at including neurorights into their constitutional legal frameworks, and international institutions and organizations, such as UNESCO and the Council of Europe, are taking an active interest in developing international policy and governance guidelines (...) on this issue. However, in many discussions of neurorights the philosophical assumptions, ethical frames of reference and legal interpretation are either not made explicit or conflict with each other. The aim of this multidisciplinary work is to provide conceptual, ethical, and legal foundations that allow for facilitating a common minimalist conceptual understanding of mental privacy, mental integrity, and cognitive liberty to facilitate scholarly, legal, and policy discussions. (shrink)

Pekka Louhiala crosses disciplines and decades to present a remarkably detailed review of the existing literature on placebos, placebo effects, and related concepts. The problem at hand—and Louhiala does aptly frame it as a problem—is a striking lack of consensus among researchers, scholars, and clinicians regarding virtually all aspects of the placebo topic. In capturing the complexity of this problem, Louhiala expertly compiles an extensive catalog of placebo literature that effectively gives the reader both a map of the territory and (...) a legend to decipher it. He does not, however, give us clear directions to find our way out of the conceptual maze. The focus is often more on the problems than their solutions, which is simultaneously the most notable weakness and the greatest strength of the book. (shrink)

The risk of creating cerebral organoids/assembloids conscious enough to suffer is a recurrent concern in organoid research ethics. On one hand, we should, apparently, avoid discovering how to distinguish between organoids that it would be permissible (non-conscious) and impermissible (conscious) to use in research, since if successful we would create organoids that suffer. On the other, if we do not, the risk persists that research might inadvertently continue to cause organoids to suffer. Moreover, since modeling some brain disorders may require (...) inducing stress in organoids, it is unclear how to eliminate the risk, if we want to develop effective therapies. We are committed to harm avoidance but hamstrung by a presumption that we should avoid research that might tell us clearly when suffering occurs. How can we negotiate this challenge and maximize the therapeutic benefits of cerebral organoid research? The author interrogates the challenge, suggesting a tentative way forward. (shrink)

The complexity of the human brain creates a spectrum of sophisticated behavioral repertoires, such as language, tool use, self-awareness, symbolic thought, cultural learning, and consciousness. Understanding how the human brain achieves that has been a longstanding challenge for neuroscientists and may bring insights into the evolution of human cognition and disease states. Human pluripotent stem cells could differentiate into specialized cell types and tissues in vitro. From this pluripotent state, it is possible to generate models of the human brain, such (...) as brain organoids. The recent observation that brain organoids can spontaneously develop complex neural network activity in a dish can help one understand how neural network oscillations evolve and vary between normal and disease states. Moreover, this finding can be leveraged to other applications outside medicine, including engineering and artificial intelligence. However, as the brain model technology becomes more complex, it raises a series of ethical and moral dilemmas. This article discusses the status of this technology, some of its current limitations, and a vision of the future. (shrink)

In June 2022, the Supreme Court of the United States overturned Roe v. Wade. The European Court of Human Rights is also expected to decide on several abortion cases. In this paper, the interpretative approaches of both courts are compared. Whereas the U.S. Supreme Court in Dobbs v. Jackson Women’s Health Organization decided on an originalist approach to the Constitution, the highest European court has always regarded the European Convention on Human Rights as a living instrument. As a result, domestic (...) laws regulating the interruption of pregnancy are seen by the Strasbourg court as interferences with a fundamental right, the right to respect for private life. Although member states of the Council of Europe enjoy a wide margin of appreciation with regard to the circumstances in which abortion will be permitted, its highest court put forward the state’s positive obligation to secure pregnant women’s right to effective respect for their physical and psychological integrity in several landmark judgments. In this way, it ensures the existence of effective mechanisms in countries with a poor record of implementing the right to a lawful abortion. Albeit at a minimum, the Strasbourg court offers protection, whereas the U.S. Supreme Court no longer does. (shrink)

The practice of solitary confinement (SC) is established within the literature as a common occurrence of torture within the prison system, and many international and national human rights organizations have called for its abolition. A somewhat more contentious topic in the literature is the practice of force feeding (FF) of hunger-striking prisoners. The paper aims to make a case against FF by establishing a parity argument that states the following: If SC is considered an immoral practice (and indeed it should (...) be), it should follow that FF is morally impermissible as well. In conclusion, this paper will argue that FF of hunger-striking prisoners is a violation of their fundamental moral rights and constitutes cruel and inhumane treatment and, therefore, should be abolished. (shrink)

The intrusive state has long viewed women as fetal containers. The Dobbs decision goes further, essentially causing women to vanish when fetuses are abstracted from their relationships to pregnant persons. The ways in which women are first controlled and then made invisible are clearly connected with the move from obedience to omission that has historically affected black Americans. When personal decisionmaking and participation in democracy are regarded as threats, those threatened restrict decisional freedom and political power, deepening structural injustices relating (...) to sex, race, and poverty. Fear of Dobbs has health effects on conditions unrelated to pregnancy and connects with erasures of human value that are not health-related. We reaffirm solidarity as a countering influence. Taking account of the richly relational context in which issues like abortion and political representation arise should lead to better, more meaningful policies, making so many people impossible to unsee. (shrink)

In this paper, I will argue that a number of well-known health interventions or initiatives could be considered anarchist, or at the very least are consistent with anarchist thinking and principles. In doing this I have two aims: First, anarchism is a misunderstood term—by way of example, I hope to first sketch out what anarchist solutions in health and healthcare could look like; second, I hope to show how anarchist thought could stand as a means to improve the health of (...) many, remedying health inequalities acting as a buffer for the many harms that threaten health and well-being. On this second point, I will argue that there are a number of theoretical and instrumental reasons why greater engagement with anarchism and anarchist thinking is needed, along with how this could contribute to health and in addressing broader injustices that create and perpetuate poor health. (shrink)

John Rawls has held up as a model of public reason the U.S. Supreme Court. I argue that the Dobbs Court is justifiably criticized for failing to respect public reason. First, the entire opinion is governed by an originalist ideological logic almost entirely incongruent with public reason in a liberal, pluralistic, democratic society. Second, Alito’s emphasis on “ordered liberty” seems completely at odds with the “disordered liberty” regarding abortion already evident among the states. Third, describing the embryo/fetus from conception until (...) birth as an “unborn human being” begs the question of the legal status of the embryo/fetus, as if an obiter dictum settled the matter. Fourth, Alito accuses the Roe court of failing to exercise judicial restraint, although Alito argued to overturn Roe in its entirety. In brief, the Dobbs opinion is an illiberal, disingenuous, ideological swamp that swallows up public reason and the reproductive rights of women. (shrink)

The reversal of Roe v. Wade by the U.S. Supreme Court allowed the states to regulate terminations of pregnancy more autonomously than during 1973–2022. Those who think that women should be legally entitled to abortions at their own request are suggesting that annulling the reversal could be an option. This would mean continued reliance on the interpretation of privacy that Roe v. Wade stood on. The interpretation does not have the moral support that its supporters think. This can be shown (...) by recalling the shortcomings of Judith Jarvis Thomson’s famous violinist example and its application to abortion laws. Philosophically better reasons for not restricting access to abortion can be found in a simple principle of fairness and in sensible theories on the value of human life. Whether or not philosophy has any use in the debate is another matter. Legal decisions to regulate terminations are probably based on pronatalist state interests, shared by the apparently disagreeing parties and immune to rational argumentation. (shrink)

The number of diagnoses and the number of persons having diagnoses have increased substantially, and studies indicate that diagnoses are given or upheld even if they are unwarranted, that is, that they do not satisfy professionally accepted diagnostic criteria. In this article, the authors investigate the ethics of withholding and withdrawing unwarranted diagnoses. First, they investigate ethical aspects that make it difficult to withhold and to withdraw such diagnoses. Second, they scrutinize whether there are psychological factors, both in persons/patients and (...) healthcare professionals, making it difficult to withdraw and withhold unwarranted diagnoses. Lastly, they use recent elements of the withholding-versus-withdrawing treatment debate in medical ethics to investigate whether there are any differences between withholding and withdrawing treatment and withdrawing and withholding unwarranted diagnoses. The authors conclude that it is crucial to acknowledge and address all these issues to reduce and avoid unwarranted diagnoses. (shrink)

In the 1970s, both Denmark and Norway passed abortion legislation that is still the basis for the regulation of abortion in these countries. The legislation was fairly liberal with abortion on demand until 12 weeks of gestation and a permission system for later abortions. This article provides a brief history of the developments leading up to these political compromises and an analysis of the reasons why they have proved remarkably stable. It ends by looking at some factors that may now (...) destabilize 50 years of stable compromise about abortion. (shrink)

In her paper, “The cost of conscience: Kant on conscience and conscientious objection,” Jeanette Kennett argues that a Kantian view of conscientious objection in medicine would bar physicians from refusing to perform certain practices based on conscience. I offer a response in the following manner: First, I reconstruct her main argument; second, I present a more accurate picture of Kant’s view of conscience. I conclude that, given a Kantian framework, a physician should be allowed to refuse to perform practices that (...) break the moral law and, thus, refuse practices that violate her conscience. (shrink)

Mallory Smith’s posthumously published book, Salt in My Soul: An Unfinished Life, is an insightful and moving account of one young woman’s experience living with a chronic, often invisible, illness.1 Mallory was diagnosed with cystic fibrosis (CF) at age three and began writing in a journal when she was 15. According to those close to her, Mallory wrote consistently over the span of 10 years, until shortly before she died at age 25 from complications related to a double lung transplant. (...) Much of what Mallory included in her journal was too difficult for her to share with family and friends while she was alive, yet she hoped that her writing would one day “offer insight for people living with, or loving someone with, chronic illness.” (page x) As Mallory explained, “I want to create a piece so moving that people are in disbelief. And I want it to be like handing people a pair of glasses, giving them a way of seeing something they didn’t even realize they weren’t seeing.” (page 291) Shortly before Mallory died, she shared the password to her 2,500-page journal with her mother, along with instructions for how to select excerpts for what would become Salt in My Soul. (shrink)

In this paper, I will examine the Supreme Court of the United States’ (SCOTUS) arguments in the majority decision in Dobbs v. Jackson Women’s Health Organization, and I will show how some of those arguments are flawed. Primarily, I will show that the right to bodily autonomy is a well-established right, both in the courts and in societal practices, and that the right to an abortion should be understood as an example of the right to bodily autonomy or bodily integrity. (...) Second, I will examine the justices’ arguments that viability is not a reasonable place to restrict abortion access, in contrast to both Roe v. Wade and Planned Parenthood v. Casey, and will offer arguments that defend viability as a valid point to limit abortion access. Third, I will highlight some politicians’ goals to enact a federal ban on abortion, and show how the attempt to pass Personhood Amendments is a pathway for doing so. The upshot of this essay to is show how the SCOTUS decision is flawed, and how granting personhood to “potential life” has consequences that extend beyond abortion access. (shrink)

The U.S. Supreme Court’s Dobbs ruling triggered a global debate about access to abortion and the legislative models governing it. In the United States, there was a sudden reversal of federal guidance about pregnancy termination that is unprecedented in Western and high-income countries. The strong polarization on the issue of abortion and the difficulty of finding a point of compromise lead one to consider the experiences of countries that have had different paths. Italy stands as a candidate for being a (...) partially alternative model because it allows abortion up to 12 weeks, but without considering it a subjective right. The legislation in place since 1978 aims to balance the interests of the fetus and those of the woman. An issue often raised concerning Italian law is that of conscientious objection granted to doctors. Many gynecologists declare themselves objectors, and this makes access to abortion more difficult in some regions of Italy. After discussing this issue and envisaging different ways to deal with it, the article concludes by highlighting new dilemmas about a possible divorce between the law and medical ethics in different directions and offers some avenues to begin setting up a response. (shrink)

This paper argues that abortion access is an important subject for bioethics scholarship and reflects on the relationship between legal frameworks and access to care. The author uses the example of the United Kingdom to examine the benefits and limitations of abortion-permissive legal frameworks in terms of access. These are legal frameworks that enable the provision of abortion but subject to restrictions. An abortion-permissive regime—first in Great Britain and then in Northern Ireland—has gone some way to improving access to care (...) over time. However, aspects of the regime (that lead to its description as permissive rather than supportive of abortion) have the potential to endanger abortion access in the future and so legal reform is necessary. (shrink)

This paper provides an overview of the development and the sociopolitical background of legislation pertaining to abortion in Finland from the nineteenth century to the current day. The first Abortion Act came to force in 1950. Before that, abortions were handled under criminal law. The 1950 law was restrictive and allowed abortions in very limited circumstances only. Its main aim was to reduce the number of abortions and especially illegal abortions. It was not very successful in reaching these goals, but, (...) significantly, it moved abortions from the realm of the criminal law to the hands of medical professionals. The birth of the welfare state and the prenatal attitudes of 1930s and 1940s Europe played their part in shaping the law. By late 1960s, with the rise of the women’s rights movement and other changes in society, there was pressure to change the outdated law. The new 1970 Abortion Act was broader and allowed abortions for limited social reasons too but left very limited, if any, room for a woman’s right to choose. After a citizen’s initiative in 2020, the year 2023 will see a significant amendment to the 1970 law; during the first 12 weeks of pregnancy, an abortion can be performed on the woman’s request alone. However, there is still a long way to go in terms of women’s rights and abortion laws in Finland. (shrink)

Professor Latham has written a thought-provoking commentary1 on my paper about advance directives.2 I am grateful for this opportunity to integrate the debate on the moral binding nature of these manifestations of will.

Requests by patients for providers of specific demographic backgrounds pose an ongoing challenge for hospitals, policymakers, and ethicists. These requests may stem from a wide variety of motivations; some may be consistent with broader societal values, although many others may reflect prejudices inconsistent with justice, equity, and decency. This paper proposes a taxonomy designed to assist healthcare institutions in addressing such cases in a consistent and equitable manner. The paper then reviews a range of ethical and logistical challenges raised by (...) such requests and proposed guidance to consider when reviewing and responding to them. (shrink)

Human germline gene editing constitutes an extremely promising technology; at the same time, however, it raises remarkable ethical, legal, and social issues. Although many of these issues have been largely explored by the academic literature, there are gender issues embedded in the process that have not received the attention they deserve. This paper examines ways in which this new tool necessarily affects males and females differently—both in rewards and perils. The authors conclude that there is an urgent need to include (...) these gender issues in the current debate, before giving a green light to this new technology. (shrink)

In his article, Thomas Rissfeldt argues the compatibility of palliative care with euthanasia and assisted suicide.1 By his account, many working within the field of palliative care feel that euthanasia and physician-assisted suicide are incompatible with palliative care. Wrongly, according to the author, since (1) the aims of palliative care and euthanasia/assisted suicide are not different, (2) euthanasia and assisted suicide are compatible with the fundamental role of the physician as healer, and (3) euthanasia and assisted suicide do not necessarily (...) constitute patient abandonment.2. (shrink)

This article puts the spotlight on the world’s largest artificial reproduction technology (ART) industry—that of Japan, seeking to explain the exceptional tardiness of the government there to install a comprehensive legal framework that regulates these practices. By relying on minutes from a conversation with an influential parliamentarian active in this area, as well as official documents, media reports, and an interview conducted with key physicians, the article reconstructs the historical trajectory leading to the enactment in December 2020 of the Assisted (...) Reproduction Technology Act. The author contends that it is only on the background of an overview of what happened in the two decades preceding the promulgation of this Act that a sense can be made of why the latter came to be as scant and evasive as it is in terms of provisions, de facto leaving unaltered the socially and ethically undesirable situation of self-regulation in ART application by the Japanese doctors. This article adds credence to the hypothesis with regard to the issue of regulatory governance of emerging technologies more broadly that the direction of travel is toward soft, as opposed to hard, law. (shrink)

After a brief overview of ethical issues in an Australian context catalyzed by the current pandemic, this article focuses on data protection in the light of recent debates about COVID-19 data tracking in Australia and globally. This article looks at the issue of trust as a fundamental principle of effective and ethical COVID-safe measures undertaken by the government. Key to ensuring such trust are Habermasian participatory dialogs, which assume trust as a condition of authentic illocution, and an emphasis on short-term (...) data capture. (shrink)

Some philosophers and segments of the public think age is relevant to healthcare priority-setting. One argument for this is based in equity: “Old” patients have had either more of a relevant good than “young” patients or enough of that good and so have weaker claims to treatment. This article first notes that some discussions of age-based priority that focus in this way on old and young patients exhibit an ambiguity between two claims: that patients classified as old should have a (...) low priority, and that patients classified as young should have high priority. The author next argues, drawing on a problem raised by Christine Overall, that equity cannot justify giving “old” patients low priority, since there is wide variety in the total lifetime experiences of older people, partly influenced by gender, race, class, and disability injustice. Finally, the author suggests that there might be a limited role for age-based prioritization in the context of infant and childhood death, since those who die in childhood are always and uncontroversially among the worst-off. (shrink)

Increasingly, transgender minors are seeking medical care such as puberty-suppressing or gender-affirming hormone therapies. Yet, whether these interventions should be performed at all is highly controversial. Some healthcare practitioners oppose irreversible interventions, considering it their duty to protect children from harm. Others view minors, like adults, as transgender individuals who must be protected from discrimination. The underlying ethical question is presented as a problem of priority. Is it primarily relevant that minors are involved? Or should decision makers focus on the (...) fact that they treat transgender individuals? The paper explores the relevance for medical practice. We provide results of an interview study with German healthcare professionals. We discuss the general question whether prioritization among different group memberships of the same person is ethically defensible. We conclude that priority conflicts between group memberships of the same person can be deceptive and should be addressed by an intersectional approach. Eventually, we discuss practical implications. (shrink)

This paper argues that cost-effectiveness analysis in the healthcare sector introduces a discrimination risk that has thus far been underappreciated and outlines some approaches one can take toward this. It is argued that appropriate standards used in cost-effectiveness analysis in the healthcare sector fail to always fully determine an optimal option, which entails that cost-effectiveness analysis often leaves decision makers with large sets of permissible options. Larger sets of permissible options increase the role of decision makers’ biases, whims, and prejudices, (...) which means that the discrimination risk increases. Two ways of mitigating this are identified: tinkering with standards used in the cost-effectiveness analysis and outlining anti-discrimination guidelines for decision makers. (shrink)

Since 2002, legislation in Spain has allowed for the creation and documentation of end-of-life decisionmaking. Over the intervening years, the actual implementation of such documents is very low. Through extensive analysis of the literature, this article explores the current status of the use of and attitudes toward advance directives in Spain and then proposes strategies for improvement in their implementation.

Many ethical theorists believe that a given distribution of healthcare is morally justified only if (1) it is cost-effective and (2) it does not discriminate against older adults and disabled people. However, if (3) cost-effectiveness involves maximizing the number of quality-adjusted life-years (QALYs) added by a given unit of healthcare resource, or cost, it seems the pursuit of cost-effectiveness will inevitably discriminate against older adults and disabled patients. I show why this trilemma is harder to escape than some theorists think. (...) We cannot avoid it by using age- or disability-weighted QALY scores, for example. I then explain why there is no sense of “discrimination” on which discrimination is both unjust, and thus something healthcare rationing must avoid, and something cost-effective healthcare rationing inevitably involves. I go on to argue that many of the reasons we have for not favoring rationing that maximizes QALYs outside the healthcare context apply in healthcare as well. Thus, claim (1) above is dubious. (shrink)

Quality-Adjusted Life Years (QALYs) and Disability-Adjusted Life Years (DALYs) are two of the most commonly used health measures to determine resource prioritization and the population burden of disease, respectively. There are different types of problems with the use of QALYs and DALYs for measuring health benefits. Some of these problems have to do with measurement, for example, the weights they ascribe to health states might fail to reflect with exact accuracy the actual well-being or health levels of individuals. But even (...) if these weights represent accurately the well-being levels of individuals, there is room for questioning whether these measures capture everything that we care about in these cases, or whether there are important issues that they leave out, including considerations of fairness or equality. In this regard, the measures have been criticized for treating the aggregation of small benefits as greater than the aggregation of fewer but bigger benefits,1 for disregarding fair chances in favor of utility maximization,2 and for raising problems when applied in the context of variable population size.3 Perhaps one of the most pervasive ethical issues that has been associated with the use of these measures is the fact that they seem to discriminate against disabled people.4 Since the measures assume that disabled people have lower well-being and a shorter life span, treating a disabled person’s medical condition contributes less to the maximization of years of life with good health than treating a non-disabled patient’s medical condition. (shrink)

In a landmark Fatwa, Saudi Arabia’s highest religious authority—The Council of Senior Scholars—declared the Islamic permissibility of oocyte cryopreservation. The fatwa sanctioned the retrieval, preservation, and future use of oocytes, ovarian tissue, and whole ovaries from cancer patients receiving gonadotoxic interventions. Although momentous, the fatwa’s specification of cancer patients effectively rendered this technology unavailable to others to whom it may be similarly beneficial, including patients with other medical conditions or patients seeking elective cryopreservation. This article argues in favor of widening (...) reproductive choices through expanded access to oocyte cryopreservation in Saudi Arabia—regardless of the underlying cause of infertility—on three grounds: the technology’s compliance with Islamic law, as a matter of fairness in medical practice, and as a means to support the well-being and flourishing of Saudi women within the context of a national societal and economic transformation strategy closely linked to their success. (shrink)

In organ transplantation, there is a lack of ethical discussion about the recipient’s right not to receive a transplant. Using the current situation of living organ transplantation and deceased organ transplantation in Japan as an example, we prospectively discussed to what extent the recipient’s right not to receive a transplant is ethically acceptable. In directed transplantation from a living donor, a recipient may refuse organ donation from a particular donor. It is preferable that a recipient’s request for organ donation from (...) a donor occurs as part of a transparent process. In nondirected transplantation from a deceased donor, refusal of transplantation from a particular type of donor appears potentially justifiable. There are both moral and pragmatic considerations. Certain refusals based solely on belief are morally unacceptable, and refusal to transplant a recipient based on the donor’s age jeopardizes the entire transplant system. When religious beliefs affect mental and physical health, individualized measures are required for transplant rejection. We also deductively developed a prospective argument based on the current status of donor–recipient communication in living organ transplantation in Japan and the 2010 amendment of the law allowing relatives to be given priority in organ transplantation from deceased donors. (shrink)

It is generally accepted that morally justified healthcare rationing must be non-discriminatory and cost-effective. However, given conventional concepts of cost-effectiveness, resources spent on disabled people are spent less cost-effectively, ceteris paribus, than resources spent on non-disabled people. Thus, it is reasonable to assume that standard cost-effectiveness discriminates against the disabled. Call this the disability discrimination problem. Part of the disability discrimination involved in cost-effectiveness stems from the way in which health-related quality of life is accounted for and measured. This paper (...) offers and defends a patient-sensitive account of health-related quality of life, which can effectively make cost-effectiveness less discriminatory against the disabled and thus more morally justified. (shrink)

Discrimination is an important real-life issue that affects many individuals and groups. It is also a fruitful field of study that intersects several disciplines and methods. This Special Section brings together papers on discrimination and prioritization in healthcare from leading scholars in bioethics and closely related fields.

It is often argued by health professionals working within the field of palliative care that palliative care and euthanasia/assisted suicide are incompatible. Across the literature, this claim is grounded on the three claims that (1) palliative care and euthanasia/assisted suicide have different aims, (2) euthanasia/assisted suicide is at odds with the doctor’s fundamental role as a healer, and (3) euthanasia/assisted suicide constitutes patient abandonment. Furthermore, even if palliative care and euthanasia/assisted suicide are compatible, it is often argued that the availability (...) of palliative care renders euthanasia/assisted suicide redundant. This depends on two claims that (1) palliative care is always available and effective, and (2) palliative care is always preferable to euthanasia/assisted suicide. This article argues that all of these claims are false, ultimately aiming to establish that palliative care and euthanasia/assisted suicide are complementary rather than mutually exclusive. (shrink)

Rigorous attention has been paid to moral distress among healthcare professionals, largely in high-income settings. More obscure is the presence and impact of moral distress in contexts of chronic poverty and structural violence. Intercultural ethics research and dialogue can help reveal how the long-term presence of morally distressing conditions might influence the moral experience and agency of healthcare providers. This article discusses mixed-methods research at one nongovernmental social support agency and clinic in Rio de Janeiro, Brazil. Chronic levels of moral (...) distress and perceptions of moral harm among clinicians in this setting were both violent, following Nancy Scheper-Hughes’ use of that term, and a source of exceptional and innovative care. Rather than glossing over the moral variables of work in such desperate extremes, ethnography in these settings reveals novel skills and strategies for managing moral distress. (shrink)

The application of mobile health holds promises of achieving greater accessibility in the evolving health care sector. The active engagement of private actors drives its growth, while the challenges that exist between health care privatization and equitable access are a concern. This article selects the private internet hospital in China as a case study. It indicates that a market-oriented regulatory mechanism of private mobile health will contribute little to improving health equity from the perspectives of egalitarians and libertarians. By integrating (...) the capability approach and the right to health, it is claimed that mobile health is a means of accessing health care for everyone, where substantive accessibility should be emphasized. With this view, this article provides policy recommendations that reinforce private sector engagement for mobile health, recognizing liberty, equity, and collective responsibility in the Chinese context. (shrink)

David Dranove and Lawton Burn’s new collaboration Big Med: Megaproviders and the High Cost of Health Care in America provides readers with a comprehensive tutorial on consolidation in United States healthcare markets over the past 40 years. Although the book is most explicitly aimed at those who look around and wonder how we arrived at a healthcare landscape dominated by giants, anyone with a serious interest in the prices of U.S. healthcare will want to have this rigorous and timely treatment (...) on their bookshelf. (shrink)

Clinicians are often called upon to assess the capacity of a patient to appoint a healthcare agent. Although a consensus has emerged that the standard for such assessment should differ from that for capacity to render specific healthcare decisions, exactly what standard should be employed remains unsettled and differs by jurisdiction. The current models in use draw heavily upon analogous methods used in clinical assessment, such as the “four skills” approach. This essay proposes an alternative model that relies upon categorization (...) and sliding scale risk assessment that can be used to determine to how much scrutiny the proxy appointment should be subjected and how much certainty of accuracy should be required in order to maximize the patient’s autonomy and ensure that her underlying wishes are met. (shrink)

Assent to medical research or treatment may be an intuitively attractive way to address the area between incapacity and capacity that might otherwise be subject to a best interests assessment. Assent has become a widely disseminated concept in law, research, and clinical ethics, but little conceptual work on assent has so far occurred. An exploration of use of assent in treatment and research in children and people with dementia suggests that at least five claims are made on behalf of assent. (...) Since at least some of these may lead to tensions with others, assent requires firmer conceptual underpinning. Whether assent remains primarily a local approach to research in children in the United States, where it appears to fit with legal background conditions, or develops its promise to overturn the dominant, binary, approach to (in)capacity will depend on the strength of future philosophical work to improve the theoretical foundations to assent. (shrink)

Several countries have legalized euthanasia on the basis of medically diagnosable suffering over the last decennial; the criteria to which they adhere differ. The topic of this article is euthanasia on the basis of existential suffering. This article presents a recent proposal to legalize euthanasia for people who experience such suffering and then discusses the issue of what the value of life may be, and whether the standard that life is normally something positive should be accepted. This provides the foundation (...) to answer the question of whether euthanasia on the basis of existential suffering should be allowed. (shrink)

By considering the history of bioethics and international humanitarian law, Joseph J. Fins contends that bioethics as an academic and moral community should stand in solidarity with Ukraine as it defends freedom and civility.

In “Nudging, Bullshitting, and the Meta-Nudge”, the author responds to William Simkulet’s claim that nudging is bullshitting (according to Harry Frankfurt’s analysis of bullshit and bullshitting), and therefore nudging during the process of informed consent renders consent invalid. The author argues that nudging is not necessarily bullshitting and then explains that although this issue is philosophically interesting, practically speaking, even if nudging is bullshitting, it does not follow that nudging necessarily renders informed consent invalid. This is obviously true in those (...) situations in which nudging during the process of informed consent is unavoidable. The author concludes with a discussion of the meta-nudge and suggests that physicians can use the meta-nudge to eliminate or decrease the power of inappropriate, problematic, or undesirable nudges. (shrink)

Alexander Zambrano sets out to refute an argument that I have made on a number of occasions over many years since 1992, which he calls “Harris’s Greater Need Argument” (2002).

This paper takes under consideration a piece by Roger Crisp in which he questions what the problem of moral luck can teach us about COVID-19 lockdown rule-breakers. Taking the position that although such rule-breakers might seem to be new examples of moral luck, Crisp ends up denying the existence of moral luck and argues that moral luck is an outdated notion in so far as it relies on other questionable aspects of morality, that is, retributivist punishment and blame. Although the (...) author agrees with Crisp that pandemic rule-breaker cases are putative examples of resultant moral luck, he proposes that Crisp has misconstrued what moral luck is and the paper examines in detail what he sees as the numerous problems with Crisp’s claims. The author concludes that Crisp’s analysis of pandemic rule-breaking does not shed any new light on the moral luck debate, and the difficult questions of luck, moral responsibility, and desert are not so easily resolved. -/- . (shrink)

Frailty is a state of increased vulnerability to poor resolution of homeostasis after a stressor event. Frailty is most frequently assessed in the old using the Clinical Frailty Scale (CSF) which ranks frailty from 1 to 9. This assessment typically takes less than one minute and is not validated in patients with learning difficulties or those under 65 years old. The National Institute for Health and Care Excellence (NICE) developed guidelines that use “frailty” as one of the priority-setting criteria for (...) how scarce, but potentially lifesaving, health care resources should be allocated during the COVID-19 pandemic. Similar guidelines have been developed elsewhere. This paper discusses the ethical implications of such rationing and argues that this is an unproven and ethically problematic form of health care rationing. It specifically discusses: (1) how the frailty ascription becomes a self-fulfilling prophecy, (2) the problematic use of “frailty” in COVID-19 “triage,” (3) the circularity of the link between age and frailty, (4) indirect discrimination because of the use of a seemingly neutral criterion in health care rationing, and (5) the difficult link between comorbidities and frailty. It is found that there was no research into the use of global frailty scores as a criterion for access to acute treatment before January 2020 and so it is concerning how readily frailty scoring has been adopted to ration access to potentially lifesaving treatments. Existing gerontological frailty scoring systems have not been developed for this purpose, and repurposing them creates significant ethical issues. (shrink)

Canada is six years into a new era of legalized medical assistance in dying (MAiD). The law continues to evolve, following a pattern in which Canadian courts rule that legal restrictions on eligibility for MAiD are unconstitutional and Parliament responds by gradually expanding eligibility for MAiD. The central tension underlying this dialogue between courts and government has focused on two conceptions of how to best promote and protect the interests of people who are vulnerable by virtue of intolerable and irremediable (...) suffering due to an illness, disease, or disability. Do we, as a society, have a duty to protect vulnerable people from seeking certain medical procedures that are contrary to their interests, as those are perceived by others? Or do we have a duty to uphold their rights to autonomy, including the right to make choices within a range that may be constrained by many factors, some of which may be socially unjust? This is a recurrent problem in bioethics and medical law, which we explore through the lens of how Canadian courts and Parliament have grappled with defining eligibility for MAiD. (shrink)

This paper takes up Axel Honneth’s suggestion that we, in the 21st century Western world, should revisit the Marxian idea of reification; unlike Honneth, however, this paper applies reification to the ways in which humans relate to non-human animals, particularly in the context of scientific experiments. Thinking about these practices through the lens of reification, the paper argues, yields a more helpful understanding of what is regarded as problematic in those practices than the standard animal rights approaches. The second part (...) of the paper offers ways of overcoming reification that go beyond Honneth’s idea of recognition by introducing Iris Murdoch’s idea of attention. This proposed strategy makes the ethical relevance of reification more salient and makes it possible to counter reification through a practice such as attention which, unlike recognition, can be consciously established. (shrink)

CQ ReviewThe main goal of the Book Review Section of Cambridge Quarterly is to cultivate a place where scholars can share their thoughts on broad philosophical topics sparked by noteworthy books. Instead of focusing narrowly on works in healthcare ethics, our reviews cast a wider net so that we may reflect on diverse ideas. Please email [email protected] if you have book recommendations or if you are interested in writing a review.

We see cases of moral luck arising in recent times, as we face the uncertainties of provisional rules for navigating the coronavirus pandemic. How should we respond to rule-breakers, and how should they view themselves, when they cause harm inadvertently? Although some argue that guilt is unnecessary for any harm that may result from luck, this paper takes moral luck seriously and encourages consideration of the benefits to be achieved by expressions of self-blame amidst troubling circumstances, from pure accidents to (...) how we live during pandemics. It argues that rule-breakers in public health crises show us the importance of taking responsibility for our actions. (shrink)

The 2002 Dutch Euthanasia law applies to patients aged 12 years and older. Developments in end-of-life care and decision-making in the last decade have sparked the debate about usefulness and necessity to extend euthanasia to include children under 12 years of age. This paper describes two opposite positions: the affirmative position of a pediatrician and expert in pediatric palliative care and the negative position of a jurist and specialist in health law.

This article discusses what arguments best support universal health care (UHC), with a focus on Norman Daniels’ equality of opportunity account. This justification for UHC hinges on the assumption of a close relationship between health care and health. But in light of empirical research that suggests that health outcomes are shaped to a large extent by factors other than health care, such as income, education, housing, and working conditions, the question arises to what extent health care is really necessary to (...) protect and promote health, and thereby opportunity. The author argues that, although this challenge to the equality of opportunity rationale is legitimate, it is not sufficiently specified to allow us to adequately assess the extent to which universal health succeeds in protecting equality of opportunity. The article concludes by outlining a more promising strategy for developing a viable rationale for UHC. (shrink)

Since its inception, the institution of postmortem organ transplantation has faced the problem of organ shortage: Every year, the demand for donor organs vastly exceeds supply, resulting in the deaths of approximately 8,000 individuals in the United States alone.1 This is in large part due to the fact that the United States, for the most part, operates under an “opt-in” policy in which people are given the opportunity to voluntarily opt-in to organ donation by registering as organ donors.2 In the (...) United States, a person’s organs will not be removed for transplantation purposes unless she has registered as a donor or her family gives their consent for organ removal.3 Jointly, these policies generate a situation where we do not retrieve as many organs as we could. (shrink)