Medical Ethics, Misc

My title may suggest that I will address the activities of medical professionals as they go about their daily business of diagnosis, prescription and treatment. Certainly, that deserves attention, but it is not my target here. My concern is, on the one hand, with typical consumers of health and medical information, and, on the other, with the problems such consumers face in understanding, interpreting and applying the information available to them.

With increased frequency, reproductive technologies are placing prospective parents in the position of choosing whether to bring a disabled child into the world. The most well-known objection to the act of “selecting against disability” is known as the Expressivist Argument. The argument claims that such acts express a negative or disrespectful message about disabled people and that one has a moral reason to avoid sending such messages. We have two primary aims in this essay. The first is to critically examine (...) the standard Expressivist Argument, which we analyze in terms of the expression of ableist attitudes. We distinguish three interpretations of the argument and argue that each version faces serious objections. Our second aim is to articulate two distinct but closely related arguments that also pertain to expressed ableist attitudes. The Expressive Harms Argument maintains that there is a moral reason to avoid actions that give rise to the perception of ableist attitudes in cases where this is likely to have negative consequences for disabled people. The Ableist Motivation Argument speaks against selecting against disability in cases where one would be motivated by ableist attitudes. While these two arguments face various objections, we seek to establish that they are more promising than the most natural interpretations of the Expressivist Argument. (shrink)

COVID-19 vaccination of children has begun in various high-income countries with regulatory approval and general public support, but largely without careful ethical consideration. This trend is expected to extend to other COVID-19 vaccines and lower ages as clinical trials progress. This paper provides an ethical analysis of COVID-19 vaccination of healthy children. Specifically, we argue that it is currently unclear whether routine COVID-19 vaccination of healthy children is ethically justified in most contexts, given the minimal direct benefit that COVID-19 vaccination (...) provides to children, the potential for rare risks to outweigh these benefits and undermine vaccine confidence, and substantial evidence that COVID-19 vaccination confers adequate protection to risk groups, such as older adults, without the need to vaccinate healthy children. We conclude that child COVID-19 vaccination in wealthy communities before adults in poor communities worldwide is ethically unacceptable and consider how policy deliberations might evolve in light of future developments. (shrink)

Artificial intelligence (AI) systems have demonstrated impressive performance across a variety of clinical tasks. However, notoriously, sometimes these systems are 'black boxes'. The initial response in the literature was a demand for 'explainable AI'. However, recently, several authors have suggested that making AI more explainable or 'interpretable' is likely to be at the cost of the accuracy of these systems and that prioritising interpretability in medical AI may constitute a 'lethal prejudice'. In this paper, we defend the value of interpretability (...) in the context of the use of AI in medicine. Clinicians may prefer interpretable systems over more accurate black boxes, which in turn is sufficient to give designers of AI reason to prefer more interpretable systems in order to ensure that AI is adopted and its benefits realised. Moreover, clinicians may be justified in this preference. Achieving the downstream benefits from AI is critically dependent on how the outputs of these systems are interpreted by physicians and patients. A preference for the use of highly accurate black box AI systems, over less accurate but more interpretable systems , may itself constitute a form of lethal prejudice that may diminish the benefits of AI to - and perhaps even harm - patients. (shrink)

It is usually appropriate for adults to make significant decisions, such as about what kinds of medical treatment to undergo, for themselves. But sometimes impairments are suffered - either temporary or permanent - which render an individual unable to make such decisions. The Mental Capacity Act 2005 sets out the conditions under which it is appropriate to regard an individual as lacking the capacity to make a particular decision (and when provisions should be made for a decision on their behalf). (...) -/- To what extent does having capacity require the endorsement of certain values? Drawing on Owens et al (2009), I assess the extent to which understanding relevant information and weighing it in coming to a decision requires certain evaluative commitments. With reference to literature on anorexia nervosa and decisions informed by religious beliefs, I argue that it is difficult to avoid the conclusion that the conditions for capacity are value-laden, and that if this is so it is important to open discussion about which patterns of distorted valuing undermine capacity, and why. (shrink)

Artificial Intelligence (AI) often outperforms human doctors in terms of decisional speed. For some diseases, the expected benefit of a fast but less accurate decision exceeds the benefit of a slow but more accurate one. In such cases, we argue, it is often justified to rely on a medical AI to maximize decision speed – even if the AI is less accurate than human doctors.

Rapidly advancing technologies in the field of extracorporeal cardiopulmonary resuscitation (ECPR) have presented a new challenge in accurate neuroprognostication following cardiac arrest. Determination of brain state informs the prognostic picture and allows providers to begin effective communication regarding likelihood of meaningful neurological recovery as defined by patients or family members. The evolving role of sedation during ECPR and its impacts on ethical tension in decision-making is reviewed. Work surrounding the advancing field of neuroprognostication after cardiac arrest and hypothermia is summarized (...) and implications of premature withdrawal of life-sustaining treatments are discussed. Advances that improve predictive value for neurological recovery are utilized in affirming and discussing the implications for end-of-life wishes of individuals in the setting of intensive resuscitative therapies. (shrink)

This article presents a quantitative way of modeling the interim decisions of clinical trials. While statistical approaches tend to focus on the epistemic aspects of statistical monitoring rules, often overlooking ethical considerations, ethical approaches tend to neglect key epistemic dimension. The proposal is a second-order decision theoretic framework. The framework provides means for retrospective assessment of interim decisions based on a clear and consistent set of criteria that combines both ethical and epistemic considerations. The framework is broadly Bayesian and addresses (...) a fundamental question behind many concerns about clinical trials: What does it take for an interim decision (e.g., whether to stop the trial, or continue) to be a good decision? I provide simulation illustrating the modeling of interim decisions counterfactually using the framework. (shrink)

Due to the intricate nature of its subject matter, medicine is always threatened by speculations and disagreements about which among its entities exist, e.g., any specific biological structures, substructures or substances, pathogenic agents, pathophysiological processes, diseases, psychosomatic relationships, therapeutic effects, and other possible and impossible things. To avoid confusion, and to determine what entities an item of medical knowledge presupposes to exist if it is to be true, we need medical ontology. The term “medical ontology” we understand to mean the (...) study that seeks to ascertain what entities exist in the world of medicine, which formal relations hold between them, and whether there are any relatioships between types of medical research and practice, on the one hand; and the new worlds they create, on the other. (shrink)

Regarding the appropriateness of deception in clinical practice, two (apparently conflicting) claims are often emphasised. First, that ‘clinicians should not deceive their patients.’ Second, that deception is sometimes ‘in a patient’s best interest.’ Recently, Hardman has worked towards resolving this conflict by exploring ways in which deceptive and non-deceptive practices extend beyond consideration of patients’ beliefs. In short, some practices only seem deceptive because of the (common) assumption that non-deceptive care is solely aimed at fostering true beliefs. Non-deceptive care, however, (...) relates to patients’ non-doxastic attitudes in important ways as well. As such, Hardman suggests that by focusing on belief alone, we sometimes misidentify non-deceptive care as ‘deceptive’. Further, once we consider patients’ beliefs and non-doxastic attitudes, identifying cases of deception becomes more difficult than it may seem. In this essay, I argue that Hardman’s reasoning contains at least three serious flaws. First, his account of deception is underdeveloped, as it does not state whether deception must be intentional. The problem is that if intention is not required, absurd results follow. Alternatively, if intention is required, then identifying cases of deception will be much easier (in principle) than Hardman suggests. Second, Hardman mischaracterises the ‘inverse’ of deceptive care. Doing so leads to the mistaken conclusion that common conceptions of non-deceptive care are unjustifiably narrow. Third, Hardman fails to adequately separate questions about deception from questions about normativity. By addressing these issues, however, we can preserve some of Hardman’s most important insights, although in a much simpler, more principled way. (shrink)

The application of machine-learning technologies to medical practice promises to enhance the capabilities of healthcare professionals in the assessment, diagnosis, and treatment, of medical conditions. However, there is growing concern that algorithmic bias may perpetuate or exacerbate existing health inequalities. Hence, it matters that we make precise the different respects in which algorithmic bias can arise in medicine, and also make clear the normative relevance of these different kinds of algorithmic bias for broader questions about justice and fairness in healthcare. (...) In this paper, we provide the building blocks for an account of algorithmic bias and its normative relevance in medicine. (shrink)

Although machine intelligence is increasingly employed in healthcare, the realm of decision-making in medical ethics remains largely unexplored from a technical perspective. We propose an approach based on fuzzy cognitive maps (FCMs), which builds on Beauchamp and Childress’ prima-facie principles. The FCM’s weights are optimized using a genetic algorithm to provide recommendations regarding the initiation, continuation, or withdrawal of medical treatment. The resulting model approximates the answers provided by our team of medical ethicists fairly well and offers a high degree (...) of interpretability. Possible applications of such a system include informal guidance on medical ethics dilemmas as well as educational purposes. (shrink)

Machine intelligence already helps medical staff with a number of tasks. Ethical decision-making, however, has not been handed over to computers. In this proof-of-concept study, we show how an algorithm based on Beauchamp and Childress’ prima-facie principles could be employed to advise on a range of moral dilemma situations that occur in medical institutions. We explain why we chose fuzzy cognitive maps to set up the advisory system and how we utilized machine learning to train it. We report on the (...) difficult task of operationalizing the principles of beneficence, non-maleficence and patient autonomy, and describe how we selected suitable input parameters that we extracted from a training dataset of clinical cases. The first performance results are promising, but an algorithmic approach to ethics also comes with several weaknesses and limitations. Should one really entrust the sensitive domain of clinical ethics to machine intelligence? (shrink)

Can machine intelligence do clinical ethics? And if so, would applying it to actual medical cases be desirable? In a recent target article (Meier et al. 2022), we described the piloting of our advisory algorithm METHAD. Here, we reply to commentaries published in response to our project. The commentaries fall into two broad categories: concrete criticism that concerns the development of METHAD; and the more general question as to whether one should employ decision-support systems of this kind—the debate we set (...) out to ignite with our target article. (shrink)

Person-centred care is a cornerstone of contemporary health policy, research and practice. However, many researchers and practitioners worry that it lacks a 'clear definition and method of measurement,' and that this creates problems for the implementation of person-centred care and limits understanding of its benefits. In this paper we urge caution about this concern and resist calls for a clear, settled definition and measurement approach. We develop a philosophical and conceptual analysis which is grounded in the body of literature concerning (...) the theory and practice of person-centred care. We consider a range of influential definitional frameworks of person-centred care, highlighting their differences and showing that they do not correspond to a clearly circumscribed and consistent underlying concept. We argue that a degree of indeterminacy and vagueness should not be seen as a problem with the concept of person-centred care; these are features of a rich and contested concept which exists prior to and outside of practical and technical operational definitions and applications. We defend the value of operating with multiple accounts of person-centred care, arguing that what counts as being person-centred can vary across different care contexts, in relation to different patient groups, and as a reflection of different, defensible ethical perspectives. Although the idea of a single, agreed definition is attractive and may seem to be a practical or even necessary step towards meaningful and coordinated action, we argue that this is only the case in a qualified sense. Comprehensive attempts to narrow down the concept in this way should be resisted, as they risk undermining what it is that makes person-centredness a valuable concept in healthcare. (shrink)

Background: Smart sensors have been developed as diagnostic tools for rehabilitation to cover an increasing number of geriatric patients. They promise to enable an objective assessment of complex movement patterns. -/- Objective: This research aimed to identify and analyze the conflicting ethical values associated with smart sensors in geriatric rehabilitation and provide ethical guidance on the best use of smart sensors to all stakeholders, including technology developers, health professionals, patients, and health authorities. -/- Methods: On the basis of a systematic (...) literature search of the scientific databases PubMed and ScienceDirect, we conducted a qualitative document analysis to identify evidence-based practical implications of ethical relevance. We included 33 articles in the analysis. The practical implications were extracted inductively. Finally, we carried out an ethical analysis based on the 4 principles of biomedical ethics: autonomy, beneficence, nonmaleficence, and justice. The results are reported in categories based on these 4 principles. -/- Results: We identified 8 conflicting aims for using smart sensors. Gains in autonomy come at the cost of patient privacy. Smart sensors at home increase the independence of patients but may reduce social interactions. Independent measurements performed by patients may result in lower diagnostic accuracy. Although smart sensors could provide cost-effective and high-quality diagnostics for most patients, minorities could end up with suboptimal treatment owing to their underrepresentation in training data and studies. This could lead to algorithmic biases that would not be recognized by medical professionals when treating patients. -/- Conclusions: The application of smart sensors has the potential to improve the rehabilitation of geriatric patients in several ways. It is important that patients do not have to choose between autonomy and privacy and are well informed about the insights that can be gained from the data. Smart sensors should support and not replace interactions with medical professionals. Patients and medical professionals should be educated about the correct application and the limitations of smart sensors. Smart sensors should include an adequate representation of minorities in their training data and should be covered by health insurance to guarantee fair access. (shrink)

The case of Alta Fixsler, where a judge ruled that withdrawing life sustaining care was in her best interest rather than transferring her to Israel, as her parents wanted, is the latest in a series of controversial paediatric best interest decisions. Using this case, as well as some other recent cases, I argue that the UK exhibits a high degree of medico-legal paternalism in best interest decisions, even though paternalism seems to be ubiquitously negatively perceived in medical ethics. Firstly, I (...) explain what I mean by medico-legal paternalism and defend my claim that this phenomenon is present in the UK. I then argue that at least philosophically (rather than legally) such a situation is impossible to justify in a secular state and that how we treat paediatric best interest decisions is very different from other areas of medical law. Lastly, I discuss proposals that aim to rectify this situation. (shrink)

This paper addresses the recent rise of the use of alternative medicine in Western countries. It offers a novel explanation of that phenomenon in terms of cognitive and economic factors related to the free-market and patient-centric approach to medicine that is currently in place in those countries, in contrast to some alternative explanations of this phenomenon. Moreover, the paper addresses this troubling trend in terms of the serious harms associated with the use of alternative medical modalities. The explanatory theory defended (...) here is then predicated on the idea that an extreme patient-centric model of medical practice that treats largely ignorant patients as consumers of medical products and services endowed with an essentially unrestricted power of freedom to choose treatments predictably leads serious and avoidable harms. Some important moral and epistemological consequences of this model are then articulated and corrective measures are suggested. (shrink)

Background: The internationalization of clinical studies requires a shared understanding of the fundamental ethical values guiding clinical studies. It is important that these values are not only embraced at the legal level but also adopted by clinicians themselves during clinical studies. Objective: Our goal is to provide an insight on how clinicians in Germany and Poland perceive and identify the different ethical issues regarding informed consent in clinical studies. Methods: To gain an understanding of how clinicians view clinical studies in (...) the countries they work in, we carried out semi-structured problem-centered interviews per telephone in Poland (n = 6) and Germany (n = 6). Our interviewees concentrated on three main topics: an appraisal of the normative framework, challenges in the information process and the protection of all participants in clinical studies. Results: Clinicians generally supported the normative framework, even though they considered it quite complex. In the two study countries, a widely noted dilemma in the information process was whether to overburden participants with extensive information or risking leaving out important facts. Clinicians were ready to exclude larger population groups from participating in clinical studies when the information process could not be carried out with standard procedures or when their inclusion was ethically sensitive. Conclusion: Clinicians need to gain a better understanding of the consequences of excluding larger population groups form participating in clinical studies. They should seek assistance in improving the information process for the inclusion of underrepresented groups in clinical studies. (shrink)

Research on mental health and illness presents a variety of unique ethical challenges. This article argues that institutional review boards (IRBs) can improve their reviews of such research by including the perspectives of individuals with the condition under study either as members of the IRB or as consultants thereto. Several reasons for including the perspectives of these individuals are advanced, with the discussion organized around a hypothetical case study involving the assessment of a novel talk-therapy modality. Having made this case, (...) the article goes on to explain how to implement the idea by building on a recent proposal by Rebecca Dresser, who argues in a number of publications for the inclusion of former research participants in the IRB review process. Finally, concerns about protecting reviewer and consultant confidentiality are addressed. (shrink)

Thought experiments that concoct bizarre possible world modalities are standard fare in debates on personal identity. Appealing to intuitions raised by such evocations is often taken to settle differences between conflicting theoretical views that, albeit, have practical implications for ethical controversies of personal identity in health care. Employing thought experiments that way is inadequate, I argue, since personhood is intrinsically linked to constraining facts about the actual world. I defend a moderate modal skepticism according to which intuiting across conceptually incongruent (...) worlds constitutes ‘invalid intuitioninferences’—i.e., carrying over intuitions gathered from facts about possible worlds that are at odds with facts about the actual world, for the purpose of making claims about real-life persons and their identity, leads to conceptual incongruences. Such a methodological fallout precludes accurate, informative judgments about personal identity in the actual world, calling into question the adequacy of thought experimental considerations for potential real world applications in medical ethics. (shrink)

The field of clinical bioethics strongly advocates for the use of advance directives to promote patient autonomy, particularly at the end of life. This paper reports a study of clinical bioethicists’ perceptions of the professional consensus about advance directives, as well as their personal advance care planning practices. We find that clinical bioethicists are often sceptical about the value of advance directives, and their personal choices about advance directives often deviate from what clinical ethicists acknowledge to be their profession’s recommendations. (...) Moreover, our respondents identified a pluralistic set of justifications for completing treatment directives and designating surrogates, even while the consensus view focuses on patient autonomy. Our results suggest important revisions to academic discussion and public-facing advocacy about advance care planning. (shrink)

For nearly two decades, ethicists have expressed concerns that the further development and use of memory modification technologies (MMTs)—techniques allowing to intentionally and selectively alter memories—may threaten the very foundations of who we are, our personal identity, and thus pose a threat to our well-being, or even undermine our “humaneness.” This paper examines the potential ramifications of memory-modifying interventions such as changing the valence of targeted memories and selective deactivation of a particular memory as these interventions appear to be at (...) the same time potentially both most promising clinically as well as menacing to identity. However, unlike previous works discussing the potential consequences of MMTs, this article analyzes them in the context of the narrative relational approach to personal identity and potential issues related to autonomy. I argue that such a perspective brings to light the ethical aspects and moral issues arising from the use of MMTs that have been hidden from previously adopted approaches. In particular, this perspective demonstrates how important the social context in which an individual lives is for the ethical evaluation of a given memory-modifying intervention. I conclude by suggesting that undertaking memory modifications without taking into account the social dimension of a person’s life creates the risk that she will not be able to meet one of the basic human needs—the autonomous construction and maintenance of personal identity. Based on this conclusion, I offer some reflections on the permissibility and advisability of MMTs and what these considerations suggest for the future. (shrink)

This article focuses on justified responses to “immoral” behavior and crimes committed by patients undergoing neuromodulation therapies. Such patients could be held morally responsible in the basic desert sense—the one that serves as a justification of severe practices such as backward‐looking moral outrage, condemnation, and legal punishment—as long as they possess certain compatibilist capabilities that have traditionally served as the quintessence of free will, that is, reasons‐responsiveness; attributability; answerability; the abilities to act in accordance with moral reasons, second‐order volitions, or (...) Deep Self. Recently leading compatibilist neuroethicists added the condition of not feeling alienated from desires motivating a person's action. This article argues against such attempts to determine conditions under which patients undergoing neuromodulation should be subject to negative reactive attitudes and legal punishment. Compatibilism should not be used to justify basic desert moral responsibility and legal punishment. Instead, a new way of thinking about the function of moral responsibility attribution is proposed for patients with neuromodulation. Their compatibilist capabilities should serve as important indicators for determining appropriate, forward‐looking courses of action, such as quarantining and restorative treatment, to ensure the public safety and well-being of the patients. (shrink)

I support Abram Brummett’s contention that there is a need for secular clinical ethics to acknowledge that various positions typically advocated for by ethicists, concerning bedside decision-making and broader policy-making, rely upon metaphysical commitments that are not often explicit. I further note that calls for “neutrality” in debates concerning conscientious refusals to provide legal health care services—such as elective abortion or medical aid-in-dying—may exhibit biases against specific metaphysical claims regarding, for instance, the ontological and moral status of fetuses or the (...) valuing of the phenomena of life, suffering, and dying/death, as constitutive of medicine’s internal morality as a profession. I conclude that there is an operative distinction between metaphysical views founded essentially upon religious tenets and those founded upon rationally defensible premises. (shrink)

Many are calling for concrete mechanisms of oversight for health research involving artificial intelligence (AI). In response, institutional review boards (IRBs) are being turned to as a familiar model of governance. Here, we examine the IRB model as a form of ethics oversight for health research that uses AI. We consider the model's origins, analyze the challenges IRBs are facing in the contexts of both industry and academia, and offer concrete recommendations for how these committees might be adapted in order (...) to provide an effective mechanism of oversight for health‐related AI research. (shrink)

While different positions on the permissibility of organ markets enjoy support, there is widespread agreement that some benefits to living organ donors are acceptable and do not raise the same moral concerns associated with organ markets, such as exploitation and commodification. We argue on the basis of two distinctions that some benefit packages offered to donors can defensibly surpass conventional reimbursement while stopping short of controversial cash payouts. The first distinction is between benefits that defray the costs of donating an (...) organ and benefits that incentivize donation by offer- ing something in excess of defraying. The second distinction is between benefits that compensate donors and benefits that are non-compensating. We argue that non-compensating benefits are innocent of moral concerns typically associated with controversial cash payouts, and thus may be a morally promising avenue for increasing rates of kidney donation to address the tragic results of undersupply. (shrink)

This chapter is an investigation of the morality of medical deportation, the practice of returning undocumented migrants, despite their ill health and/or injuries, to their countries of origin. In Sect. 16.1, I look more closely at the nature of medical deportation. In Sect. 16.2, I argue that understanding the morality of medical deportation requires nonideal theory. In Sect. 16.3, I outline contractualism as a nonideal theory. In Sect. 16.4, I apply contractualism to medical deportation and make the case that, first, (...) there are in principle some cases in which medical deportation is morally permissible but, second, the standards that must be met in cases of morally permissible medical deportation are very high. In Sect. 16.5, I consider stakeholders other than the patient and the medical care facility and examine the ways in which effects on them might render medical deportation morally impermissible. I conclude that real-world cases of morally permissible medical deportation are rare at best, and there is little prospect of this situation changing. (shrink)

Proponents of vaccine mandates typically claim that everyone who can be vaccinated has a moral or ethical obligation to do so for the sake of those who cannot be vaccinated, or in the interest of public health. I evaluate several previously undertheorised premises implicit to the ‘obligation to vaccinate’ type of arguments and show that the general conclusion is false: there is neither a moral obligation to vaccinate nor a sound ethical basis to mandate vaccination under any circumstances, even for (...) hypothetical vaccines that are medically risk-free. Agent autonomy with respect to self-constitution has absolute normative priority over reduction or elimination of the associated risks to life. In practical terms, mandatory vaccination amounts to discrimination against healthy, innate biological characteristics, which goes against the established ethical norms and is also defeasible a priori. (shrink)

Type 1 diabetes (T1D) is a chronic illness that requires intensive lifelong management of blood glucose concentrations by means of external insulin administration. There have been substantial developments in the ways of measuring glucose levels, which is crucial to T1D self-management. Recently, continuous glucose monitoring (CGM) has allowed people with T1D to keep track of their blood glucose levels in near real-time. These devices have alarms that warn users about potentially dangerous blood glucose trends, which can often be shared with (...) ther people. CGM is consistently associated with improved glycemic control and reduced hypoglycemia and is currently recommended by doctors. However, due to the costs of CGM, only those who qualify for hospital provision or those who can personally afford it are able to use it, which excludes many people. In this paper, I argue that unequal access to CGM results in: (1) unjust health inequalities, (2) relational injustice, (3) injustice with regard to agency and autonomy, and (4) epistemic injustice. These considerations provide prima facie moral reasons why all people with T1D should have access to CGM technology. I discuss the specific case of CGM policy in the Netherlands, which currently only provides coverage for a small group of people with T1D, and argue that, especially with additional considerations of cost-effectiveness, the Dutch government ought to include CGM in basic health care insurance for all people with T1D. (shrink)

In this paper, I present a case study on a recent attempt at implementing what I refer to as the “Pro-lifer’s Asymmetrical Punishment View” (PAPV), the view that people should be legally punished for performing abortions whereas women should not be so punished for procuring abortions. While doing so, I argue that the endeavor, which took place in the state of Alabama, is incoherent relative to the conjunction of its purported underlying moral rationale and the Alabama criminal code. I then (...) present what I take to be possible explanations for, practical implications of, and solutions to the attempt and its incoherence. Given that other endeavors to implement PAPV are currently in the works and are so with similar underlying moral rationales and within similar criminal codes, what I present and argue here is not limited to Alabama’s attempt at doing so. (shrink)

Kyle Fritz argues for the following conditional statement: if healthcare providers should be allowed to conscientiously object to providing abortions in jurisdictions where abortions...

Protecting claims of conscience can function to fairly balance burdens among relevant parties without first having to resolve an underlying and intractable moral disagreement. Recently, a number of theorists have argued that the relevant criteria for protecting negative appeals to conscience in health care can (suitably modified) be equally well-satisfied in cases of positive appeals. I argue that, when it comes to certain practices, the justification of positive appeals to conscience does in fact depend upon contested claims in the debate (...) over the moral permissibility of those practices. This fact threatens to undermine one of the central functions of protecting appeals to conscience: that we can agree to disagree. (shrink)

This paper analyses the ethics of routine measurement for healthcare improvement. Routine measurement is an increasingly central part of healthcare system design and is taken to be necessary for successful healthcare improvement efforts. It is widely recognised that the effectiveness of routine measurement in bringing about improvement is limited—it often produces only modest effects or fails to generate anticipated improvements at all. We seek to show that these concerns do not exhaust the ethics of routine measurement. Even if routine measurement (...) does lead to healthcare improvements, it has associated ethical costs which are not necessarily justified by its benefits. We argue that the practice of routine measurement changes the function of the healthcare system, resulting in an unintended and ethically significant transformation of the sector. It is difficult to determine whether such changes are justified or offset by the benefits of routine measurement because there may be no shared understanding of what is ‘good’ in healthcare by which to compare the benefits of routine measurement with the goods that are precluded by it. We counsel that the practice of routine measurement should proceed with caution and should be recognised to be an ethically significant choice, rather than an inevitability. (shrink)

The following pages sketch the outlines of “a Canaanite reading” of the health system. Beginning with the Black person—African, Afro-diasporic, Aboriginal, and Torres Strait Islander—who is seen by a health professional, the functions and effects of the racializing gaze are examined. I wrestle with Al Saji’s understanding of “colonial disregard,” Whittaker’s insights into the extractive disposition of settler institutions vis-à-vis Indigenous peoples, and Saidiya Hartman and Fred Moten’s struggle with the spectacular. This leads me to conclude that the situation of (...) the Black within the health system is a tragic one. The prescription for the path out of this tragedy that I settle on, responding to Okiji’s opening call, is found in Vernon Ah Kee’s “Unwritten” series. (shrink)

Hundreds of millions of rare biospecimens are stored in laboratories and biobanks around the world. Often, the researchers who possess these specimens do not plan to use them, while other researchers limit the scope of their work because they cannot acquire biospecimens that meet their needs. This situation raises an important and underexplored question: how should scientists allocate biospecimens that they do not intend to use? We argue that allocators should aim to maximise the social value of the research enterprise (...) when allocating scarce biospecimens. We provide an ethical framework for assessing the social value of proposed research projects and describe how the framework could be implemented. (shrink)

Background Consent policies for post-mortem organ procurement (OP) vary throughout Europe, and yet no studies have empirically evaluated the ethical implications of contrasting consent models. To fill this gap, we introduce a novel indicator of governance quality based on the ideal of informed support, and examine national differences on this measure through a quantitative survey of OP policy informedness and preferences in seven European countries. -/- Methods Between 2017–2019, we conducted a convenience sample survey of students (n = 2006) in (...) Austria (AT), Belgium (BE), Denmark (DK), Germany (DE), Greece (GR), Slovenia (SI) and Spain (ES), asking participants about their donation preferences, as well as their beliefs and views about the policy in place. From these measures, we computed indices of informedness, policy support, and fulfilment of unexpressed preferences, which we compared across countries and consent systems. -/- Results Our study introduces a tool for analyzing policy governance in the context of OP. Wide variation in policy awareness was observed: Most respondents in DK, DE, AT and BE correctly identified the policy in place, while those in SI, GR and ES did not. Respondents in opt-out countries (AT, BE, ES and GR) tended to support the policy in place (with one exception, i.e., SI), whereas those in opt-in countries (DE and DK) overwhelmingly opposed it. These results reveal stark differences in governance quality across countries and consent policies: We found a preponderance of informed opposition in opt-in countries and a general tendency towards support–either informed or uninformed–in opt-out countries. We also found informed divergence in opt-in countries and a tendency for convergence–either informed or uninformed–among opt-out countries. -/- Conclusion Our study offers a novel tool for analyzing governance quality and illustrates, in the context of OP, how the strengths and weaknesses of different policy implementations can be estimated and compared using quantitative survey data. (shrink)

Background: Poverty and social deprivation have adverse effects on health outcomes and place a significant burden on healthcare systems. There are some actions that can be taken to tackle them from within healthcare institutions, but clinicians who seek to make frontline services more responsive to the social determinants of health and the social context of people’s lives can face a range of ethical challenges. We summarise and consider a case in which clinicians introduced a poverty screening initiative into paediatric practice (...) using the discourse and methodology of healthcare quality improvement. -/- Discussion: Whilst suggesting that interventions like the PSI are a potentially valuable extension of clinical roles, which take advantage of the unique affordances of clinical settings, we argue that there is a tendency for such settings to continuously reproduce a narrower set of norms. We illustrate how the framing of an initiative as QI can help legitimate and secure funding for practical efforts to help address social ends from within clinical service, but also how it can constrain and disguise the value of this work. A combination of methodological emphases within QI and managerialism within healthcare institutions leads to the prioritisation, often implicitly, of a limited set of aims and governing values for healthcare. This can act as an obstacle to a genuine broadening of the clinical agenda, reinforcing norms of clinical practice that effectively push poverty ‘off limits.’ We set out the ethical dilemmas facing clinicians who seek to navigate this landscape in order to address poverty and the social determinants of health. -/- Conclusions: We suggest that reclaiming QI as a more deliberative tool that is sensitive to these ethical dilemmas can enable managers, clinicians and patients to pursue health-related values and ends, broadly conceived, as part of an expansive range of social and personal goods. (shrink)

Since its advent in the 20th century, informed consent has become a cornerstone of ethical healthcare, and obtaining it a core obligation in medical contexts. In my dissertation, I aim to examine the theoretical underpinnings of informed consent and identify what values it is taken to protect. I will suggest that the fundamental motivation behind informed consent rests in something I’ll call bodily self-sovereignty, which I argue involves a coupling of two groups of values: autonomy and non-domination on the one (...) hand, and self-ownership and personal integrity on the other. I will then go on to consider two 'case studies' I take to shed light on what is at stake in securing informed consent - consent in psychiatrically ill populations, and consent to interventions that involve the modification of the genetic germline. (shrink)

We explore the ethics of deliberately exposing consenting adults to SARS-CoV-2 to induce immunity to the virus (“DEI” for short). We explain what a responsible DEI program might look like. We explore a consequentialist argument for DEI according to which DEI is a viable harm-reduction strategy. Then we consider a non-consequentialist argument for DEI that draws on the moral significance of consent. Additionally, we consider arguments for the view that DEI is unethical on the grounds that, given that large-scale DEI (...) would be highly likely to result in some severe illnesses and deaths, DEI amounts to a form of killing. Our thesis is that incorporating a DEI program alongside the status-quo “calibrate-the-curve” responses could have significant advantages at the early stages of pandemics. These potential advantages mean that, at a minimum, research into DEI would have been justified early in the COVID-19 pandemic, and that DEI programs should be explored as potential additions to our overall approach to emerging pandemics in the future. (shrink)

The scope and type of property rights recognized over the effectiveness of antibiotics have a direct effect on how those claiming ownership engage in the exploitation and stewardship of this scarce resource. We examine the different property claims and rights the four major interest groups are asserting on antibiotics: (i) the inventors, (ii) those demanding that the resource be treated like any other transferable commodity, (iii) those advocating usage restrictions based on good stewardship principles and (iv) those considering the resource (...) as common heritage of humankind. (shrink)

By examining the global public good nature of pandemic preparedness we can identify key social justice issues that need to be confronted to increase citizens’ voluntary compliance with prevention and mitigation measures. As people tend to cooperate on a voluntary basis only with systems they consider fair, it becomes difficult to ensure compliance with public health measures in a context of extreme inequality. Among the major inequalities that need to be addressed we can find major differences in the extensiveness and (...) intensiveness of quarantine experiences, lack of opportunities to participate in common efforts, hardship in complying with disease control recommendations, and an unfair distribution of the cooperative surplus. (shrink)

Recent changes to the Common Rule have helped reduce regulatory burden on researchers conducting minimal risk research. However, in this paper, I propose a way of minimizing burden further within the existing confines of the current regulations. I focus my discussion on the newly created “benign behavioral interventions” category of exempt research, arguing that this exemption from the federal regulations governing research with human subjects should be more expansively interpreted by the Secretary's Advisory Committee on Human Research Protections (SACHRP) than (...) is currently the case. Specifically, I argue against the restriction, advocated by SACHRP, that the exemption exclude “physical (bodily) tasks” unless they are “incidental to the behavioral intervention.” This restriction, I argue, is problematically vague and does no significant moral work. Acceptance of my proposed reinterpretation of “benign behavioral interventions” would, I hope, result in a significant reduction in regulatory burden for minimal risk research. (shrink)

There has been a growing interest in research concerning memory modification technologies (MMTs) in recent years. Neuroscientists and psychologists are beginning to explore the prospect of controllable and intentional modification of human memory. One of the technologies with the greatest potential to this end is optogenetics—an invasive neuromodulation technique involving the use of light to control the activity of individual brain cells. It has recently shown the potential to modify specific long-term memories in animal models in ways not yet possible (...) with other MMTs. As the therapeutic potential of optogenetics has already prompted approval of the first human trials, it is especially important and timely to consider the opportunities and dangers this technology may entail. In this article, we focus on possible consequences of optogenetics as an MMT by analyzing fundamental threats potentially associated with memory modifications: the potential disruption of personality and authenticity. (shrink)

The wishes of registered organ donors are regularly set aside when family members object to donation. This genuine overruling of the wishes of the deceased raises difficult ethical questions. A successful argument for providing the family with a veto must (a) provide reason to disregard the wishes of the dead, and (b) establish why the family should be allowed to decide. One branch of justification seeks to reconcile the family veto with important ideas about respecting property rights, preserving autonomy, and (...) preventing harm. These arguments are ultimately unsuccessful. Another branch of arguments is consequentialist, pointing out the negative consequences of removing the veto. Whether construed as concerning family distress or as a potential drop in the organs available, these arguments are unsuccessful; the first fails to recognize the tremendous distress associated with waiting for an organ, while the second has little supporting evidence. A final section considers and rejects whether combining some of the arguments just examined could justify the family veto. We should thus remove the family veto in organ donation. (shrink)

McCarthy et al.’s proposal gains much of its plausibility by relying on a superficial treatment of justice, human dignity, sin, and the common good within the Christian tradition. Upon closer inspection of what these terms mean within the context of Christianity, it becomes clear that despite using the same phrases (e.g., a commitment to “protecting vulnerable populations,” the goal of “promoting justice,” etc.) contemporary secular bioethical goals are often deeply at odds with goals of Christian bioethics. So, while the authors (...) are right that there is room for dialogue (and even agreement) concerning general moral principles, the process of specification and application of these principles will often be heavily influenced by competing ethical traditions. Such divergent influences will often frustrate cooperative ventures between secular and religious bioethical projects. Thus, when put into action, McCarthy et al.’s proposal will—at best—produce a divided kingdom; one that cannot hope to stand. (shrink)