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This paper addresses the critiques based on trade-offs and normativity presented in response to our target article proposing the Public Health Emergency Risk and Crisis Communication (PHERCC) framework. These critiques highlight the ethical dilemmas in crisis communication, particularly the balance between promoting public autonomy through transparent information and the potential stigmatization of specific population groups, as illustrated by the discussion of the mpox outbreak among men who have sex with men. This critique underscores the inherent tension between communication effectiveness and autonomy versus fairness and equity. In response, our paper reiterates the adaptability of the PHERCC framework, emphasizing its capacity to tailor messages to diverse audiences, thereby reducing potential stigmatization and misinformation. Through community engagement and feedback integration, the PHERCC framework aims to optimize the effectiveness of communication strategies while addressing ethical concerns. Furthermore, by involving affected communities in the communication strategy from the onset, the framework seeks to minimize ethical trade-offs and enhance the acceptance and effectiveness of public health messages. [ABSTRACT FROM AUTHOR]

Risk and crisis communication (RCC) is a current ethical issue subject to controversy, mainly due to the tension between individual liberty (a core component of fairness) and effectiveness. In this paper we propose a consistent definition of the RCC process in public health emergencies (PHERCC), which comprises six key elements: evidence, initiator, channel, publics, message, and feedback. Based on these elements and on a detailed analysis of their role in PHERCC, we present an ethical framework to help design, govern and evaluate PHERCC strategies. The framework aims to facilitate RCC, incorporating effectiveness, autonomy, and fairness. It comprises five operational ethical principles: openness, transparency, inclusivity, understandability, and privacy. The resulting matrix helps understanding the interplay between the PHERCC process and the principles of the framework. The paper includes suggestions and recommendations for the implementation of the PHERCC matrix. [ABSTRACT FROM AUTHOR]

This paper problematizes the precision medicine approach embraced by the All of Us Research Program (US) and by Genomics England (UK) in terms of benefits distribution, by arguing that current "diversity and inclusion" efforts do not prevent exclusiveness, unless the framing and scope of the projects are revisited in public health terms. Grounded on document analysis and fieldwork interviews, this paper analyzes efforts to address potential patterns of exclusion upstream (from participating in precision medicine research) and downstream (from benefitting from precision medicine outputs). It argues that efforts for inclusion upstream are not corresponded downstream, and this unbalance jeopardizes the equitable capacities of the projects. It concludes that enhanced focus on socio-environmental determinants of health and aligned public health interventions as precision medicine outputs would be to the benefit of all and especially of those who are most at risk of (upstream as well as downstream) exclusion. [ABSTRACT FROM AUTHOR]

AbstractBioethics has dedicated itself to exploring and defending both reasons for and against certain aspects of clinical care, biomedical research and health policy, including what decisions must be made, who should make them, and how they should be made. In pediatrics, it’s widely acknowledged that parents’ reasons may matter pragmatically; attending to parents’ reasons is important if we want to work with families. Yet the conventional view in pediatric ethics is that parents’ reasons are irrelevant to whether a decision is permissible or impermissible according to accepted ethical standards. In this paper, we explore whether parents’ reasons matter ethically and, if so, in what way and for whom. First, we clarify what we mean by ‘reasons.’ Second, we provide an overview of how reasons are typically treated in medical decision-making and pediatric ethics. Third, we analyze a hypothetical pediatric case to illustrate how changing reasons can transform ethical analyses, including by contributing to where and how clinicians and ethicists draw the boundaries intrinsic to common pediatric ethical frameworks. We push back against the conventional view and argue that parents’ reasons matter ethically in several ways. We call for further research on the role of parents’ reasons in clinical ethics deliberation. [ABSTRACT FROM AUTHOR]

AbstractThis paper argues that bioethics as a field should broaden its scope to include the ethics of war, focusing on war’s public health effects. The “Introduction” section describes the bioethics literature on war, which emphasizes clinical and research topics while omitting public health. The section, “War as a public health crisis” demonstrates the need for a public health ethics approach by framing war as a public health crisis. The section, “Bioethics principles for war and public health” proposes six bioethics principles for war that address its public health dimensions: health justice, accountability, dignified lives, public health sustainability, nonmaleficence, and public health maximization. The section, “Justifying and applying bioethical principles” shows how these principles inform ethical analysis, including just war theory and military ethics. The section, “From principles to practice” envisions ways in which bioethicists can promote these principles in practice through research, teaching, and service. The “Conclusion” section urges bioethicists to engage with war as a public health crisis, including calling attention to war’s impact on civilians, especially women, children, and other vulnerable groups. [ABSTRACT FROM AUTHOR]

AbstractMuch of the debate over the definition and criteria for determining our death has focused on disagreement over the correct biological account of death, i.e., what it means for any organism to die. In this paper, we argue that this exclusive focus on the biology of death is misguided, because it ignores ethical and social factors that bear on the acceptability of criteria for determining our death. We propose that attention shift from strictly biological considerations to ethical and social considerations that bear on the determination of what we call “civil death.” We argue for acceptance of a neurological criterion for determining death on grounds that it is the most reasonable way to synthesize biological, ethical, and social considerations about our death.. [ABSTRACT FROM AUTHOR]

Throughout the COVID-19 pandemic, shortages of scarce healthcare resources consistently presented significant moral and practical challenges. While the importance of vaccines as a key pharmaceutical intervention to stem pandemic scarcity was widely publicized, a sizable proportion of the population chose not to vaccinate. In response, some have defended the use of vaccination status as a criterion for the allocation of scarce medical resources. In this paper, we critically interpret this burgeoning literature, and describe a framework for thinking about vaccine-sensitive resource allocation using the values of responsibility, reciprocity, and justice. Although our aim here is not to defend a single view of vaccine-sensitive resource allocation, we believe that attending critically with the diversity of arguments in favor (and against) vaccine-sensitivity reveals a number of questions that a vaccine-sensitive approach to allocation should answer in future pandemics. [ABSTRACT FROM AUTHOR]

Abstract“Suffering” is a central concept within bioethics and often a crucial consideration in medical decision making. As used in practice, however, the concept risks being uninformative, ambiguous, or even misleading. In this paper, we consider a series of cases in which “suffering” is invoked and analyze them in light of prominent theories of suffering. We then outline ethical hazards that arise as a result of imprecise usage of the concept and offer practical recommendations for avoiding them. Appeals to suffering are often getting at something ethically important. But this is where the work of ethics begins, not where it ends. [ABSTRACT FROM AUTHOR]

Physicians generally recommend that patients resuscitated with naloxone after opioid overdose stay in the emergency department for a period of observation in order to prevent harm from delayed sequelae of opioid toxicity. Patients frequently refuse this period of observation despiteenefit to risk. Healthcare providers are thus confronted with the challenge of how best to protect the patient's interests while also respecting autonomy, including assessing whether the patient is making an autonomous choice to refuse care. Previous studies have shown that physicians have widely divergent approaches to navigating these conflicts. This paper reviews what is known about the effects of opioid use disorder on decision-making, and argues that some subset of these refusals are non-autonomous choices, even when patients appear to have decision making capacity. This conclusion has several implications for how physicians assess and respond to patients refusing medical recommendations after naloxone resuscitation. [ABSTRACT FROM AUTHOR]

AbstractA novel advantage of the use of machine learning (ML) systems in medicine is their potential to continue learning from new data after implementation in clinical practice. To date, considerations of the ethical questions raised by the design and use of adaptive machine learning systems in medicine have, for the most part, been confined to discussion of the so-called “update problem,” which concerns how regulators should approach systems whose performance and parameters continue to change even after they have received regulatory approval. In this paper, we draw attention to a prior ethical question: whether the continuous learning that will occur in such systems after their initial deployment should be classified, and regulated, as medical research? We argue that there is a strong prima facie case that the use of continuous learning in medical ML systems should be categorized, and regulated, as research and that individuals whose treatment involves such systems should be treated as research subjects. [ABSTRACT FROM AUTHOR]

This paper opens a critical conversation about the ethics of international bioethics conferencing and proposes principles that commit to being anti-discriminatory, global, and inclusive. We launch this conversation in the Section, Case Study, with a case example involving the International Association of Bioethics' (IAB's) selection of Qatar to host the 2024 World Congress of Bioethics. IAB's choice of Qatar sparked controversy. We believe it also may reveal deeper issues of Islamophobia in bioethics. The Section, Principles for International Bioethics Conferencing, sets forth and defends proposed principles for international bioethics conferencing. The Section, Applying Principles to Site Selection applies the proposed principles to the case example. The Section, Applying Principles Beyond Site Selection addresses other applications of the proposed principles. The Section, Objections responds to objections. We close (in the Section, Conclusion) by calling for a wider discussion of our proposed principles. One-Sentence Capsule Summary: How should bioethicists navigate the ethics of global bioethics conferencing? [ABSTRACT FROM AUTHOR]

Environmental health remains a niche topic in bioethics, despite being a prominent social determinant of health. In this paper we argue that if bioethicists are to take the project of health justice as a serious one, then we have to address environmental injustices and the threats they pose to our bioethics principles, health equity, and clinical care. To do this, we lay out three arguments supporting prioritizing environmental health in bioethics based on bioethics principles including a commitment to vulnerable populations and justice. We also highlight and advocate for environmental law efforts that align with these priorities, focusing specifically on the need for a right to a healthy environment. Our intention is to draw attention to the legal and ethical concepts that underlie the importance of a healthy environment, and urge bioethicists to prioritize both legal and ethical advocacy against environmental injustices in their practice. [ABSTRACT FROM AUTHOR]

The concept of personhood has been central to bioethics debates about abortion, the treatment of patients in a vegetative or minimally conscious states, as well as patients with advanced dementia. More recently, the concept has been employed to think about new questions related to human-brain organoids, artificial intelligence, uploaded minds, human-animal chimeras, and human embryos, to name a few. A common move has been to ask what these entities have in common with persons (in the normative sense), and then draw conclusions about what we do (or do not) owe them. This paper argues that at best the concept of "personhood" is unhelpful to much of bioethics today and at worst it is harmful and pernicious. I suggest that we (bioethicists) stop using the concept of personhood and instead ask normative questions more directly (e.g., how ought we to treat this being and why?) and use other philosophical concepts (e.g., interests, sentience, recognition respect) to help us answer them. It is time for bioethics to end talk about personhood. [ABSTRACT FROM AUTHOR]

In this paper, I take seriously calls for public engagement in human genome editing decision- making by endorsing the convening of a "Citizens Jury" in conjunction with the International Commission on the Clinical Use of Human Germline Genome Editing's next summit scheduled for March 6-8, 2023. This institutional modification promises a more inclusive, deliberative, and impactful form of engagement than standard bioethics engagement opportunities, such as comment periods, by serving both normative and political purposes in the quest to offer moral guidance on gene editing. In examining evidence from the Australian Citizens' Jury on Genome Editing convened in 2021, I argue that Citizens' Juries should work in tandem with governing institutions to preserve the role of expertise while ensuring that the diverse views of the public are incorporated into their final reports as well. First, early inclusivity allows "the people" to hold agenda setting power through helping to set resource priorities. This also makes a downstream deliberative event, such as the called for Global Citizens' Assembly, both more likely to occur and more influential on policy. Second, Jury's diverse composition promises substantive contributions to the Commission's work. Third, Citizens' Juries could help to cultivate the Commission's trustworthiness. [ABSTRACT FROM AUTHOR]

The medical profession contains five "spheres of morality": clinical care, clinical research, scientific knowledge, population health, and the market. These distinct sets of normative commitments require physicians to act in different ways depending on the ends of the activity in question. For example, a physician-scientist emphasizes patients' well-being in clinic, prioritizes the scientific method in lab, and seeks to maximize shareholder returns as a board member of a pharmaceutical firm. Physicians increasingly occupy multiple roles in healthcare and move between them frequently, creating the possibility of conflict between the ethical obligations of their various roles. This paper examines the entire moral landscape of medicine through the lens of role morality. It develops a novel framework that helps physicians recognize how their moral commitments depend on the nature and context of the situation, clarifies ethical conflicts that physicians face, and concludes with ideas for resolving these conflicts. [ABSTRACT FROM AUTHOR]

The article presents the discussion on promise of international collaboration and sharing by bringing together bioethicists from throughout the world at the 2024 IAB conference. Topics include authors of the target paper suggest that Islamophobia is a problem in bioethics; and arrests, cell phone searches, beatings, and harassment of LGBQTI residents in Qatar.

Abstract Some physicians refuse to perform life-sustaining interventions, such as tracheostomy, on patients who are very likely to remain permanently unconscious. To explain their refusal, these clinicians often invoke the language of “futility”, but this can be inaccurate and can mask problematic forms of clinical power. This paper explores whether such refusals should instead be framed as conscientious objections. We contend that the refusal to provide interventions for patients very likely to remain permanently unconscious meets widely recognized ethical standards for the exercise of conscience. We conclude that conscientious objection to tracheostomy and other life-sustaining interventions on such patients can be ethical because it does not necessarily constitute a form of invidious discrimination. Furthermore, when a physician frames their refusal as conscientious objection, it makes transparent the value-laden nature of their objection and can better facilitate patient access to the requested treatment. [ABSTRACT FROM AUTHOR]

Abstract For healthcare professionals and organizations, there is an emphasis on addressing moral distress and compassion fatigue among clinicians. While addressing these issues is vital, this paper suggests that the philosophical concept of agent-regret is a relevant but overlooked issue in healthcare. To experience agent-regret is to regret your harmful but not wrongful actions. This person’s action results in someone being killed or significantly injured, but it was ethically faultless. Despite being faultless, agent-regret is an emotional response concerning one’s agency in a situation that results in death or significant harm. In healthcare, many clinicians are likely to experience regret for faultless actions that significantly harm or cause the death of a patient. The recognition of agent-regret in healthcare is significant because it differs, conceptually and practically, from moral distress and compassion fatigue. Building on the work of Wojtowicz (2022), we should strive to understand clinicians’ agent-regret by recognizing their agency in the situation, not lessening or removing it. [ABSTRACT FROM AUTHOR]

In this paper, we contend with whether we still need traditional ethics education as part of healthcare professional training given the abilities of chatGPT (generative pre-trained transformer) and other large language models (LLM). We reflect on common programmatic goals to assess the current strengths and limitations of LLMs in helping to build ethics competencies among future clinicians. Through an actual case analysis, we highlight areas in which chatGPT and other LLMs are conducive to common bioethics education goals. We also comment on where such technologies remain an imperfect substitute for human-led ethics teaching and learning. Finally, we conclude that the relative strengths of chatGPT warrant its consideration as a teaching and learning tool in ethics education in ways that account for current limitations and build in flexibility as the technology evolves. [ABSTRACT FROM AUTHOR]

In this article, we explore the potential of enhancing academic prose and idea generation by fine-tuning a large language model (here, GPT-3) on one's own previously published writings: AUTOGEN ("AI Unique Tailored Output GENerator"). We develop, test, and describe three distinct AUTOGEN models trained on the prior scholarly output of three of the current authors (SBM, BDE, JS), with a fourth model trained on the combined works of all three. Our AUTOGEN models demonstrate greater variance in quality than the base GPT-3 model, with many outputs outperforming the base model in format, style, overall quality, and novel idea generation. As proof of principle, we present and discuss examples of AUTOGEN-written sections of existing and hypothetical research papers. We further discuss ethical opportunities, concerns, and open questions associated with personalized academic prose and idea generators. Ethical opportunities for personalized LLMs such as AUTOGEN include increased productivity, preservation of writing styles and cultural traditions, and aiding consensus building. However, ethical concerns arise due to the potential for personalized LLMs to reduce output diversity, violate privacy and intellectual property rights, and facilitate plagiarism or fraud. The use of coauthored or multiple-source trained models further complicates issues surrounding ownership and attribution. Open questions concern a potential credit-blame asymmetry for LLM outputs, the legitimacy of licensing agreements in authorship ascription, and the ethical implications of coauthorship attribution for data contributors. Ensuring the output is sufficiently distinct from the source material is crucial to maintaining ethical standards in academic writing. These opportunities, risks, and open issues highlight the intricate ethical landscape surrounding the use of personalized LLMs in academia. We also discuss open technical questions concerning the integration of AUTOGEN-style personalized LLMs with other LLMs, such as GPT-4, for iterative refinement and improvement of generated text. In conclusion, we argue that AUTOGEN-style personalized LLMs offer significant potential benefits in terms of both prose generation and, to a lesser extent, idea generation. If associated ethical issues are appropriately addressed, AUTOGEN alone or in combination with other LLMs can be seen as a potent form of academic enhancement. [ABSTRACT FROM AUTHOR]

Terminally ill patients in 10 states plus Washington, D.C. have the right to take prescribed medications to end their lives (medical aid in dying). But otherwise-eligible patients with neuromuscular disabilities (ALS and other illnesses) are excluded if they are physically unable to "self-administer" the medications without assistance. This exclusion is incompatible with disability rights laws that mandate assistance to provide equal access to health care. This contradiction between aid-in-dying laws and disability rights laws can force patients and clinicians into violating one or the other, potentially creating an underclass of patients denied medical care that is available to those with other (less physically disabling) terminal illnesses. The immediacy of this issue is demonstrated by a lawsuit in Federal court filed in August 2021, requesting assistance in self-administration for terminally ill patients with neuromuscular diseases. This paper discusses the background of this conflict, the ethical issues at the heart of the dilemma, and recommends potential remedies. [ABSTRACT FROM AUTHOR]

Long used as a tool for medical compliance and adhering to treatment plans, behavior contracts have made their way into the in-patient healthcare setting as a way to manage the "difficult" patient and family. The use of this tool is even being adopted by healthcare ethics consultants (HECs) in US hospitals as part of their work in navigating conflict at the bedside. Anecdotal evidence of their increasing popularity among clinical ethicists, for example, can be found at professional bioethics meetings and conversations and idea-sharing among practitioners on HEC social media. While there are a handful of papers gesturing toward a bioethical critique of behavior contracts of various types, the use of behavior contracts in the context of interpersonal conflict has not been vetted by bioethicists to determine their ethical legitimacy or efficacy. In this paper, we highlight a set of ethical concerns that we believe must be addressed before continuing or widespread implementation of behavior contracts to manage the "difficult" patient or family. [ABSTRACT FROM AUTHOR]

Abstract Regulations implemented by World Athletics (WA) require female athletes with differences of sexual development to suppress their blood testosterone levels in order to participate in certain women’s sporting competitions. These regulations have been justified by reference to fairness. In this paper, we reconstruct WA’s understanding of fairness, which requires a “level playing field” where no athlete should have a significant performance advantage based on factors other than talent, dedication, and hard work over an average athlete in their category. We demonstrate that by placing regulations only on testosterone levels, while ignoring physical as well as socioeconomic advantages, WA consistently fails to meet its own definition of fairness. We then discuss several ways in which this definition could be met. Our analysis shows that a categorical system, in which athletes are divided into categories based on properties leading to significant performance advantages, is best suited for meeting WA’s definition of fairness. [ABSTRACT FROM AUTHOR]

Genomic screening at population scale generates many ethical considerations. One is the normative role that people's preferences should play in determining access to genomic information in screening contexts, particularly information that falls beyond the scope of screening. We expect both that people will express a preference to receive such results and that there will be interest from the professional community in providing them. In this paper, we consider this issue in relation to the just and equitable design of population screening programs like reproductive genetic carrier screening (RGCS). Drawing on a pluralistic public health ethics perspective, we claim that generating and reporting information about genetic variants beyond the scope of the screening program usually lacks clinical, and perhaps personal, utility. There are both pragmatic and ethical reasons to restrict information provision to that which fits the stated purpose of the program. [ABSTRACT FROM AUTHOR]

This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as hybrid models that combine elements of both approaches. Only one group practices PE that seeks community perspectives to advance equity. In most cases, PE does little more than record already well-known views held by the most vocal groups, and thus is unlikely to produce more just or equitable processes or policy outcomes. Our exploration of the strengths, weaknesses, and possibilities of current forms of PE suggests a need to rethink both "public" and "engagement." [ABSTRACT FROM AUTHOR]

Conversational artificial intelligence (CAI) presents many opportunities in the psychotherapeutic landscape—such as therapeutic support for people with mental health problems and without access to care. The adoption of CAI poses many risks that need in-depth ethical scrutiny. The objective of this paper is to complement current research on the ethics of AI for mental health by proposing a holistic, ethical, and epistemic analysis of CAI adoption. First, we focus on the question of whether CAI is rather a tool or an agent. This question serves as a framework for the subsequent ethical analysis of CAI focusing on topics of (self-) knowledge, (self-)understanding, and relationships. Second, we propose further conceptual and ethical analysis regarding human-AI interaction and argue that CAI cannot be considered as an equal partner in a conversation as is the case with a human therapist. Instead, CAI's role in a conversation should be restricted to specific functions. [ABSTRACT FROM AUTHOR]

While experience often affords important knowledge and insight that is difficult to garner through observation or testimony alone, it also has the potential to generate conflicts of interest and unrepresentative perspectives. We call this tension the paradox of experience. In this paper, we first outline appeals to experience made in debates about access to unproven medical products and disability bioethics, as examples of how experience claims arise in bioethics and some of the challenges raised by these claims. We then motivate the idea that experience can be an asset by appealing to themes in feminist and moral epistemology, distinguishing between epistemic and justice-based appeals. Next, we explain the concern that experience may be a liability by appealing to empirical work on cognitive biases and theoretical work about the problem of partial representation. We conclude with preliminary recommendations for addressing the paradox and offer several questions for future discussion. [ABSTRACT FROM AUTHOR]

The article focuses on behavioral contracts adopted by healthcare ethics consultants (HECs) in hospitals across U.S. to navigate the conflict at the bedside. Topics discussed include scholarly papers published on advocating use of modality in regulation of human behavior, use of device proposed by Ronald Mann, behavioral contract pioneer, in 1970 in outpatient mental health context, and interpersonal conduct management between patients and family member in interaction with medical personnel.

In some views, philosophy's glory days in bioethics are over. While philosophers were especially important in the early days of the field, so the argument goes, the majority of the work in bioethics today involves the "simple" application of existing philosophical principles or concepts, as well as empirical work in bioethics. Here, we address this view head on and ask: What is the role of philosophy in bioethics today? This paper has three specific aims: (1) to respond to skeptics and make the case that philosophy and philosophers still have a very important and meaningful role to play in contemporary bioethics, (2) to discuss some of the current challenges to the meaningful integration of philosophy and bioethics, and (3) to make suggestions for what needs to happen in order for the two fields to stay richly connected. We outline how bioethics center directors, funders, and philosopher bioethicists can help. [ABSTRACT FROM AUTHOR]

Secular clinical ethics has responded to the problem of moral pluralism with a procedural approach. However, defining this term stirs debate: H. Tristram Engelhardt Jr. has championed a contentless proceduralism (P1), while others, conversely, argue for a proceduralism that permits some content in the form of moral claims (P2). This paper argues that the content P2 permits ought to be expanded to include some metaphysical commitments, in an approach referred to as P2+. The need for P2+ is demonstrated by analyzing and rejecting three standards (the best interest or harm principle, internal reasonability, and the child's right to an open future) used by P2 to justify overriding religiously motivated refusals of treatment for children. These approaches fail because each maintains a neutral stance regarding the truth of religious belief. This paper drives at the broader thesis that the proceduralism of secular clinical ethics requires some moral and metaphysical commitments. [ABSTRACT FROM AUTHOR]

This paper considers the responsibilities of the FDA with regard to disseminating information about the benefits and harms of e-cigarettes. Tobacco harm reduction advocates claim that the FDA has been overcautious and has violated ethical obligations by failing to clearly communicate to the public that e-cigarettes are far less harmful than cigarettes. We argue, by contrast, that the FDA's obligations in this arena are more complex than they may appear at first blush. Though the FDA is accountable for informing the public about the health risks and benefits of products it regulates, it also has other roles (and attendant responsibilities) that inform when and how it should disseminate information. In addition to being a knowledge purveyor, it is also a knowledge producer, an advisor to the public, and a practical agent shaping the material conditions in which people make health-related choices. In our view, those other roles call for caution in the way the FDA interprets and communicates the available evidence. [ABSTRACT FROM AUTHOR]

In this paper, we make the case that a person who is considering or has already made a decision that appears seriously harmful to that person should in some cases be judged incapable of making that decision because of the harmfulness of the decision. We focus on the English case of C of 2015. C refused life-saving dialysis. The hospital wanted her declared incompetent to make this decision under the English Mental Capacity Act of 2005. The Judge argued that the consequences for a person's welfare of their decision are irrelevant to the assessment of competence, a position labeled "internalism." This aligns with an assessment of decision-making competence on a strictly cognitivist model. However, internalism misrepresents decision-making. The outcomes of decision-making processes should be part and parcel of judgments of decision-making competence, and in some cases are necessary for any judgment of incompetence to be made. [ABSTRACT FROM AUTHOR]

Ever since the publication of Derek Parfit's Reasons and Persons, bioethicists have tended to distinguish between two different ways in which reproductive technologies may have implications for the welfare of future persons. Some interventions harm or benefit particular individuals: they are "person affecting." Other interventions determine which individual, of a number of possible individuals, comes into existence: they are "identity affecting" and raise the famous "non-identity problem." For the past several decades, bioethical debate has, for the most part, proceeded on the assumption that direct genetic modification of human embryos would be person affecting. In this paper, I argue that that genome editing is highly unlikely to be person affecting for the foreseeable future and, as a result, will neither benefit nor harm edited individuals. [ABSTRACT FROM AUTHOR]

Increasing privacy concerns are arising from expanding use of aggregated personal information in health practices. Conversely, in light of the promising benefits of data driven healthcare, privacy is being frequently dismissed as outdated, costly and ultimately egotistical. This paper aims to review the theoretical framework on privacy in order to overcome the often simplistic debate between the primacy of individual or collective interests. As a result, it is argued that although privacy can be understood as freedom of personal choice in matters of sharing intimacy, it is foundational to both community belonging and to social and political organizations at large. Ethical decisions on the use of data analytics technologies in health practices should also take into account the social effects of violating privacy. [ABSTRACT FROM AUTHOR]

Patients who experience difficulty making medical decisions are often referred to as "ambivalent." However, the current lack of attention to the nuances between a cluster of phenomena that resemble ambivalence means that we are not always recognizing what is really going on with a patient. Importantly, different kinds of "ambivalence" may call for different approaches. In this paper, we present a taxonomy of ambivalence-related phenomena, provide normative analysis of some of the effects of—and common responses to—such mental states, and sketch some practical strategies for addressing ambivalence. In applying lessons from the philosophical literature and decision theory, our aim is to provide ethicists and clinicians with the tools to better understand and effectively intervene in cases of ambivalence. [ABSTRACT FROM AUTHOR]

The article discusses the article "Inefficacy Interim Monitoring Procedures in Randomized Clinical Trials: The Need to Report," by E. L. Korn and B. Freidlin. In the article the authors offer their opinions on clinical trials and on several assertions and results which are found in Korn and Freidlin's article.

The application of artificial intelligence and machine learning (ML) technologies in healthcare have immense potential to improve the care of patients. While there are some emerging practices surrounding responsible ML as well as regulatory frameworks, the traditional role of research ethics oversight has been relatively unexplored regarding its relevance for clinical ML. In this paper, we provide a comprehensive research ethics framework that can apply to the systematic inquiry of ML research across its development cycle. The pathway consists of three stages: (1) exploratory, hypothesis-generating data access; (2) silent period evaluation; (3) prospective clinical evaluation. We connect each stage to its literature and ethical justification and suggest adaptations to traditional paradigms to suit ML while maintaining ethical rigor and the protection of individuals. This pathway can accommodate a multitude of research designs from observational to controlled trials, and the stages can apply individually to a variety of ML applications. [ABSTRACT FROM AUTHOR]

Community engagement (CE) is gaining prominence in global health research. A number of ethical goals–spanning the instrumental, intrinsic, and transformative–have been ascribed to CE in global health research. This paper draws attention to an additional transformative value that CE is not typically linked to but that seems very relevant: solidarity. Both are concerned with building relationships and connecting parties that are distant from one another. This paper first argues that furthering solidarity should be recognized as another ethical goal for CE in global health research. It contends that, over time, CE can build the bases of solidaristic relationships—moral imagination, recognition, understanding, empathy—between researchers and community members. Applying concepts from existing accounts of solidarity, the paper develops preliminary ideas about who should be engaged and how to advance solidarity. The proposed approach is compared to current CE practice in global health research. Finally, the paper briefly considers how solidaristic CE could affect how global health research is performed. [ABSTRACT FROM AUTHOR]

Beneficence is a foundational ethical principle in medicine. To provide benefit to a patient is to promote and protect the patient's wellbeing, to promote the patient's interests. But there are different conceptions of wellbeing, emphasizing different values. These conceptions of wellbeing are contrary to one another and give rise to dissimilar ideas of what it means to benefit a patient. This makes the concept of beneficence ambiguous: is a benefit related to the patient's goals and wishes, or is it a matter of objective criteria that constitute wellbeing? This paper suggests a unified conception of wellbeing for use in medicine to determine what counts as a benefit. Two components of wellbeing are identified: (1) objective functioning/health and (2) the patient's view of her own good. The paper explores how to apply, balance, and weigh these components in clinical situations to determine what counts as a benefit to a patient. [ABSTRACT FROM AUTHOR]

In this paper, we explore the recent creation of "iBlastoids," which are 3-D structures that resemble early human embryos prior to implantation which formed via self-organization of reprogrammed adult skin cells. We explore some of the ethical, philosophical, social, and regulatory issues related to this research, with focus particularly on what it means to "anticipate" research outcomes when using novel methods or when serendipitous discoveries are made. We defend the need for reflexive, anticipatory, and deliberative ethical and conceptual work by researchers working in emerging and contentious research domains, in collaboration with interdisciplinary scholars, as well as regulators, funders, and publics. [ABSTRACT FROM AUTHOR]

While the accumulation and increased circulation of genomic data have captured much attention over the past decade, privacy risks raised by the diversification and integration of omics have been largely overlooked. In this paper, we propose the outline of a framework for assessing privacy risks in multi-omic research and databases. Following a comparison of privacy risks associated with genomic and epigenomic data, we dissect ten privacy risk-impacting omic data properties that affect either the risk of re-identification of research participants, or the sensitivity of the information potentially conveyed by biological data. We then propose a three-step approach for the assessment of privacy risks in the multi-omic era. Thus, we lay grounds for a data property-based, 'pan-omic' approach that moves away from genetic exceptionalism. We conclude by inviting our peers to refine these theoretical foundations, put them to the test in their respective fields, and translate our approach into practical guidance. [ABSTRACT FROM AUTHOR]

Health disparities are primarily driven by structural inequality including systemic racism. Medical educators, led by the AAMC, have tended to minimize these core drivers of health disparities. Instead, it has adopted a culture-based agenda through the framework of cultural competence to address disparities despite a paucity of supporting data. Cultural competence is ethnocentric in orientation and its content sustains biases that are long-standing in health care. Moreover, Cultural competence is based on a number of flawed assumptions and is not structured around a set of clearly stated ethical values. In this paper, we will demonstrate ways in which Cultural competence reflects embedded ethnocentrism, perpetuates entrenched biases, and fails to recognize the depth and breadth of systemic racism as these relate to the stated goal of Cultural competence—the mitigation of health disparities. In addition, we offer a reframed approach to health disparities in medical education. [ABSTRACT FROM AUTHOR]

Eating disorders are mental illnesses that can have a significant and persistent physical impact, especially for those who are not treated early in their disease trajectory. Although many persons with eating disorders may make a full recovery, some may not; this is especially the case when it comes to persons with severe and enduring anorexia nervosa (SEAN), namely, those who have had anorexia for between 6 and 12 years or more. Given that persons with SEAN are less likely to make a full recovery, a different treatment philosophy might be ethically warranted. One potential yet scarcely considered way to treat persons with SEAN is that of a harm reduction approach. A harm reduction philosophy is deemed widely defensible in certain contexts (e.g. in the substance use and addictions domain), and in this paper we argue that it may be similarly ethically defensible for treating persons with SEAN in some circumstances. [ABSTRACT FROM AUTHOR]

Over the last few decades, multiple studies have examined the understanding of participants in clinical research. They show variable and often poor understanding of key elements of disclosure, such as expected risks and the experimental nature of treatments. Did the participants in these studies give valid consent? According to the standard view of informed consent they did not. The standard view holds that the recipient of consent has a duty to disclose certain information to the profferer of consent because valid consent requires that information to be understood. The contents of the understanding and disclosure requirements are therefore conceptually linked. In this paper, we argue that the standard view is mistaken. The disclosure and understanding requirements have distinct grounds tied to two different ways in which a token of consent can be rendered invalid. Analysis of these grounds allows us to derive the contents of the two requirements. It also implies that it is sometimes permissible to enroll willing participants who have not understood everything that they ought to be told about their clinical trials. [ABSTRACT FROM AUTHOR]

Precision medicine relies on data and biospecimens from participants who willingly offer their personal information on the promise that this act will ultimately result in knowledge that will improve human health. Drawing on anthropological framings of the "gift," this paper contextualizes participation in precision medicine as inextricable from social relationships and their ongoing ethical obligations. Going beyond altruism, reframing biospecimen and data collection in terms of socially regulated gift-giving recovers questions of responsibility and care. As opposed to conceiving participation in terms of donations that elide clinical labor critical to precision medicine, the gift metaphor underscores ethical commitments to reciprocity and responsibility. This demands confronting inequities in precision medicine, such as systemic bias and lack of affordability and access. A focus on justice in precision medicine that recognizes the sociality of the gift is a critical frontier for bioethics. [ABSTRACT FROM AUTHOR]

The article discusses paper builds on the conceptual tools from three interrelated philosophical debates that help structure important chaotic discussions about surrogates for living human brains and resolve practical issues related to regulatory matters. Topics include the evaluation of the practical and regulatory implications of the "goodness" of such surrogates created for research purposes; and a decision-maker has refrain from actions run the risk of causing harm to the public.

Along with potential benefits to healthcare delivery, machine learning healthcare applications (ML-HCAs) raise a number of ethical concerns. Ethical evaluations of ML-HCAs will need to structure the overall problem of evaluating these technologies, especially for a diverse group of stakeholders. This paper outlines a systematic approach to identifying ML-HCA ethical concerns, starting with a conceptual model of the pipeline of the conception, development, implementation of ML-HCAs, and the parallel pipeline of evaluation and oversight tasks at each stage. Over this model, we layer key questions that raise value-based issues, along with ethical considerations identified in large part by a literature review, but also identifying some ethical considerations that have yet to receive attention. This pipeline model framework will be useful for systematic ethical appraisals of ML-HCA from development through implementation, and for interdisciplinary collaboration of diverse stakeholders that will be required to understand and subsequently manage the ethical implications of ML-HCAs. [ABSTRACT FROM AUTHOR]

The distinction between germline and somatic gene editing is fundamental to the ethics of human gene editing. Multiple conferences of scientists, ethicists, and policymakers, and multiple professional bodies, have called for moratoria on germline gene editing, and editing of human germline cells is considered to be an ethical "red line" that either never should be crossed, or should only be crossed with great caution and care. However, as research on germline gene editing has progressed, it has become clear that not all germline interventions are alike, and that these differences make a significant moral difference, when it comes to ethical questions about research, regulation, clinical application, and medical justification. In this paper, I argue that, rather than lumping all germline interventions together, we should distinguish between revising, correcting, and transferring genes, and I assess the consequences of this move for the ethics of gene editing. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing policies for pandemics differ by institution, health system, and applicable law. Most seem to agree that a patient's ability to benefit from treatment and to survive are first-order considerations. However, there is debate about what clinical measures should be used to make that determination and about other factors that might be ethically appropriate to consider. In this paper, we discuss resource allocation and several related ethical challenges to the healthcare system and society, including how to define benefit, how to handle informed consent, the special needs of pediatric patients, how to engage communities in these difficult decisions, and how to mitigate concerns of discrimination and the effects of structural inequities. [ABSTRACT FROM AUTHOR]

The past decade has witnessed escalating legal and ethical challenges to the diagnosis of death by neurologic criteria (DNC). The legal tactic of demanding consent for the apnea test, if successful, can halt the DNC. However, US law is currently unsettled and inconsistent in this matter. Consent has been required in several trial cases in Montana and Kansas but not in Virginia and Nevada. In this paper, we analyze and evaluate the legal and ethical bases for requiring consent before apnea testing and defend such a requirement by appealing to ethical and legal principles of informed consent and battery and the right to refuse medical treatment. We conclude by considering and rebutting two major objections to a consent requirement for apnea testing: (1) a justice-based objection to allocate scarce resources fairly and (2) a social utility objection that halting the diagnosis of brain death will reduce the number of organ donors. [ABSTRACT FROM AUTHOR]