In Working Virtue: Virtue Ethics and Contemporary Moral Problems, leading figures in the fields of virtue ethics and ethics come together to present the first ...

Feminism is an antiauthoritarian movement that has sought to unmask many traditional “authorities” as ungrounded. Given this, it might seem as if feminists are required to abandon the concept of authority altogether. But, we argue, the exercise of authority enables us to coordinate our efforts to achieve larger social goods and, hence, should be preserved. Instead, what is needed and what we provide for here is a way to distinguish legitimate authority from objectionable authoritarianism.

Feminism is an antiauthoritarian movement that has sought to unmask many traditional “authorities” as ungrounded. Given this, it might seem as if feminists are required to abandon the concept of authority altogether. But, we argue, the exercise of authority enables us to coordinate our efforts to achieve larger social goods and, hence, should be preserved. Instead, what is needed and what we provide for here is a way to distinguish legitimate authority from objectionable authoritarianism.

This research explores the experiences of UK NHS healthcare professionals working with asylum applicants housed in contingency accommodation during the COVID-19 pandemic. Using a critical understanding of the concept of moral resilience as a theoretical framework, we explore how the difficult circumstances in which they worked were navigated, and the extent to which moral suffering led to moral transformation. Ten staff from a general practice participated in semistructured interviews. Encountering the harms endured by people seeking asylum prior to arrival in (...) the UK and through the UK’s ‘Hostile Environment’ caused healthcare staff moral suffering. They responded to this in several ways, including: (1) feeling grateful for their own fortunes; (2) defining the limitations of their professional obligations; (3) focusing on the rewards of work and (4) going above and beyond usual care. Although moral resilience is reflected in much of the data, some participants described how the work caused ideological transformations and motivated challenges to systems of oppression. We show how current moral resilience theory fails to capture these transformative political and social responses, warning of how, instead, it might encourage healthcare staff to maintain the status quo. We caution against the widespread endorsement of current formulations of moral resilience in contemporary social and political climates, where the hostile and austere systems causing suffering are the result of ideological political decisions. Future work should instead focus on enabling working conditions to support, and developing theory to capture, collective resistance. (shrink)

Working Virtue is the first substantial collective study of virtue theory and contemporary moral problems. Leading figures in ethical theory and applied ethics discuss topics in bioethics, professional ethics, ethics of the family, law, interpersonal ethics, and the emotions.Virtue ethics is centrally concerned with character traits or virtues and vices such as courage, kindness, and generosity. These character traits must be looked to in any attempt to understand which particular actions are right or wrong and how we ought to live (...) our lives. As a theoretical approach, virtue ethics has made an impressive comeback in relatively recent history, both posing an alternative to, and, in some ways, complementing well-known theoretical stances such as utilitarianism and deontology. Yet there is still very little material available that presents virtue-ethical approaches to practical contemporary moral problems, such as what we owe distant strangers, our parents, or even non-human animals. This book fills the gap by dealing with these and other pressing moral problems in a clear and theoretically nuanced manner. The contributors offer a variety of perspectives, including pluralistic, eudaimonistic, care-theoretical, Chinese, comparative, and stoic. This variety allows the reader to appreciate not only the wide range of topics for which a virtue-ethical approach may be fitting, but also the distinctive ways in which such an approach may be manifested. (shrink)

Working Virtue is the first substantial collective study of virtue theory and contemporary moral problems. Leading figures in ethical theory and applied ethics discuss topics in bioethics, professional ethics, ethics of the family, law, interpersonal ethics, and the emotions.

The Fundamentals of Care Framework is an evidence‐based, theory‐informed framework that conceptualises high‐quality fundamental care. The Framework places the nurse–patient relationship at the centre of care provision and outlines the nurse behaviours required for relationship development. Numerous instruments exist to measure behavioural aspects of the nurse–patient relationship; however, the literature offers little guidance on which instruments are psychometrically sound and best measure the core relationship elements of the Fundamentals of Care Framework. This study evaluated the quality of nurse–patient relationship instruments (...) by (1) assessing their content development and measurement properties (e.g. dimensionality, targeting, reliability, validity) and (2) mapping instrument content to the Framework's core relationship elements: trust, focus, anticipate, know, and evaluate. Twenty‐seven instruments were evaluated. Findings demonstrated that patients and nurses were rarely involved in item development. Most instruments exhibited poor measurement properties, with only one instrument having complete information on all quality indicators. Instrument content focused primarily on nurses getting to know patients and earning their trust, with only 54, 18, and 1 item(s), respectively, measuring ‘focus’, ‘anticipate’ and ‘evaluate’. Hence, there does not appear to be a robust instrument measuring behavioural aspects of nurse–patient relationships, nor one capturing the relationship elements of the Fundamentals of Care Framework. (shrink)

Psychological eudaimonism is the view that we are constituted by a desire to avoid the harmful. This entails that coming to see a prospective or actual object of pursuit as harmful to us will unseat our positive evaluative belief about that object. There is more than one way that such an 'unseating' of desire may be caused on an intellectualist picture. This paper arbitrates between two readings of Socrates' 'attack on laziness' in the Meno, with the aim of constructing a (...) model of moral education based on PE's implied moral psychology. In particular, we argue against the view that when we come to see - through prudential reasoning - that our blatant evaluative beliefs and desires disserve eudaimonism, we will no longer perceive their intentional objects as choice-worthy. We suggest, instead, that it is by experiencing shame that we cease to see the intentional objects of our evaluative beliefs and desires as worthy of pursuit. This form of 'hydraulic education' bypasses reason-responsiveness altogether. As such, it only allows for practical norms to be derived from the nature of agency indirectly, namely by enabling the use of discursive practical reasoning. (shrink)

Controversial and provocative, To Be Real is a blueprint for the creation of a new political force.

Advances in DNA sequencing technology open new possibilities for public health genomics, especially in the form of general population preventive genomic sequencing. Such screening programs would sit at the intersection of public health and preventive health care, and thereby at once invite and resist the use of clinical ethics and public health ethics frameworks. Despite their differences, these ethics frameworks traditionally share a central concern for individual rights. We examine two putative individual rights—the right not to know, and the child’s (...) right to an open future—frequently invoked in discussions of predictive genetic testing, in order to explore their potential contribution to evaluating this new practice. Ultimately, we conclude that traditional clinical and public health ethics frameworks, and these two rights in particular, should be complemented by a social justice perspective in order adequately to characterize the ethical dimensions of general population PGS programs. (shrink)

Phase 1 healthy volunteer clinical trials—which financially compensate subjects in tests of drug toxicity levels and side effects—appear to place pressure on each joint of the moral framework justifying research. In this article, we review concerns about phase 1 trials as they have been framed in the bioethics literature, including undue inducement and coercion, unjust exploitation, and worries about compromised data validity. We then revisit these concerns in light of the lived experiences of serial participants who are income-dependent on phase (...) 1 trials. We show how participant experiences shift attention from discrete exchanges, behaviors, and events in the research enterprise to the ongoing and dynamic patterns of serial participation in which individual decision-making is embedded in collective social and economic conditions and shaped by institutional policies. We argue in particular for the ethical significance of structurally diminished voluntariness, routine powerlessness in setting the terms of exchange, and incentive structures that may promote pharmaceutical interests but encourage phase 1 healthy volunteers to skirt important rules. (shrink)

This essay explores three issues in respect for autonomy that pose unfinished business for the concept. By this, I mean that the dialogue over them is ongoing and essentially unresolved. These are: whether we ought to respect persons or their autonomous choices; the role of relational autonomy; and whether nonhuman animals can be autonomous. In attending to this particular set of unfinished business, I highlight some critical moral work left aside by the concept of respect for autonomy as understood in (...) Beauchamp and Childress’ Principles of Biomedical Ethics. Specifically, while significant pragmatic traction is gained by the authors’ focus on autonomous choice, carving such a focus out from the broader questions of moral respect and the autonomy of the person leaves aside a number of questions that we might have thought a view about respect for autonomy in biomedicine ought to answer. These include: How should physicians respond when autonomous patients make decisions that appear nonautonomous? What is the impact of the view that autonomy is “relational” for cross-cultural differences in how autonomy is respected? If chimpanzees can be autonomous, what does that mean for how they should be treated? (shrink)

Human beings with diminished decision-making capacities are usually thought to require greater protections from the potential harms of research than fully autonomous persons. Animal subjects of research receive lesser protections than any human beings regardless of decision-making capacity. Paradoxically, however, it is precisely animals’ lack of some characteristic human capacities that is commonly invoked to justify using them for human purposes. In other words, for humans lesser capacities correspond to greater protections but for animals the opposite is true. Without explicit (...) justification, it is not clear why or whether this should be the case. Ethics regulations guiding human subject research include principles such as respect for persons—and related duties—that are required as a matter of justice while regulations guiding animal subject research attend only to highly circumscribed considerations of welfare. Further, the regulations guiding research on animals discount any consideration of animal welfare relative to comparable human welfare. This paper explores two of the most promising justifications for these differences␣between the two sets of regulations. The first potential justification points to lesser moral status for animals on the basis of their lesser capacities. The second potential justification relies on a claim about the permissibility of moral partiality as␣found in common morality. While neither potential justification is sufficient to justify the regulatory difference as it stands, there is possible common ground between supporters of some regulatory difference and those rejecting the current difference. (shrink)

Background: Discussion of the influence of money on bioethics research seems particularly salient in the context of research on the ethical, legal, and social implications (ELSI) of human genomics, as this research may be financially supported by the ELSI Research Program. Empirical evidence regarding the funding of ELSI research and where such research is disseminated, in relation to the specific topics of the research and methods used, can help to further discussions regarding the appropriate influence of specific institutions and institutional (...) contexts on ELSI and other bioethics research agendas. Methods: We reviewed 642 ELSI publications (appearing between 2003 and 2008) for reported sources of funding, forum for dissemination, empirical and nonempirical methods, and topics of investigation. Results: Most ELSI research is independent of direct grant-based funding sources; 66% reported no such sources of funding. The National Human Genome Research Institute (NHGRI) is the most dominant source of funding; 16% of publications acknowledged at least one source of NHGRI grant funding. Funding is acknowledged more frequently in empirical than nonempirical publications and more frequently in publications in public health journals than in any other ELSI research dissemination forums. Dominant research topics vary by publication forum and by reported funding. Conclusions: ELSI research is surprisingly independent of direct grant-based funding, yet correlations are apparent between this type of funding and publication placement, topics addressed, and methods used, implying a not insignificant influence on ELSI research agenda setting. However, given the relatively low percentage of publications acknowledging external grant-based funding, as well as other significant correlations between publication placement and topics addressed, additional institutional contexts, perhaps related to professional advancement or valuation, may shape research agendas in ways that potentially exceed the direct influences of grant-based funding in this area. In some cases, grant-based funding may actually counter other potentially problematic institutional influences. (shrink)

In their Target Article, “Promoting Ethical Payment in Human Infection Challenge Studies,” Lynch et al. propose a framework for ethical payment to research participants and apply it to the c...

Should monkeys be used in painful and often deadly infectious disease research that may save many human lives? This is the challenging question that Anne Barnhill, Steven Joffe, and Franklin G. Miller take on in their carefully argued and compelling article “The Ethics of Infection Challenges in Primates.” The authors offer a nuanced and even-handed position that takes philosophical worries about nonhuman primate moral status seriously and still appreciates the very real value of such research for human welfare. Overall, they (...) argue for an extension and revision of the recommendations regarding chimpanzee research offered by the Institute of Medicine in 2011; the practical upshot of their argument would allow for infection challenge research for promising interventions for Ebola and Marburg virus diseases but not for smallpox or the common cold. The IOM recommendations regarding chimpanzee research put in motion an exceptionalist policy for this great ape population. Barnhill and colleagues’ proposal would enlarge the scope of that exceptionalism to embrace NHPs other than great apes. But is such exceptionalism warranted? It is not obvious to me either that the more sophisticated capacities of a species as a whole give it greater ethical protections or that less intellectually or socially sophisticated animals ought to therefore receive less protection when it comes to painful experimental interventions. (shrink)

While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross-disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis of a sample (...) of ELSI publications appearing between 2003 and 2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. We found that the aims of ethics within ELSI are largely prescriptive and address multiple groups. We also found that the bioethics methods used in the ELSI literature are both diverse between publications and multiple within publications, but are usually not themselves discussed or employed as suggested by bioethics method proponents. Ethics in ELSI is also sometimes undistinguished from related inquiries. (shrink)

The standard notion of autonomy in medical ethics does not require that autonomous choices not be irrational. The paper gives three examples of seemingly irrational patient choices and discusses how a rational autonomy analysis differs from the standard view. It then considers whether a switch to the rational autonomy view would lead to overriding more patient decisions but concludes that this should not be the case. Rather, a determination of whether individual patient decisions are autonomous is much less relevant than (...) usually considered in determining whether health care providers must abide by these decisions. Furthermore, respect for rational autonomy entails strong positive requirements of respect for the autonomy of the person as a rational decision maker. The rationality view of autonomy is conceptually stronger than the standard view, allows for a more nuanced understanding of the practical moral calculus involved in respecting patient autonomy, and promotes positive respect for patient autonomy. (shrink)

Research uses of human bodies maintained by mechanical ventilation after being declared dead by neurological criteria, were first published in the early 1980s with a renewed interest in research on the newly or nearly dead occurring in about last decade. While this type of research may take many different forms, recent technologic advances in genomic sequencing along with high hopes for genomic medicine, have inspired interest in genomic research with the newly dead. For example, the Genotype-Tissue Expression program through the (...) National Institutes of Health aims to collect large numbers of diverse human tissues with the eventual goal of elucidating the genetic bases of common diseases through a better understanding of the relationship between genetic variation and gene expression. (shrink)

Studies of the association between wealth and fertility in industrial populations have a rich history in the evolutionary literature, and they have been used to argue both for and against a behavioral ecological approach to explaining human variability. We consider that there are strong arguments in favor of measuring fertility (and proxies thereof) in industrial populations, not least because of the wide availability of large-scale secondary databases. Such data sources bring challenges as well as advantages, however. The purpose of this (...) article is to illustrate these by examining the association between wealth and reproductive success in the United States, using the National Longitudinal Study of Youth 1979. We conduct a broad-based exploratory analysis of the relationship between wealth and fertility, employing both cross-sectional and longitudinal approaches, and multiple measures of both wealth (income and net worth) and fertility (lifetime reproductive success and transitions to first, second and third births). We highlight the kinds of decisions that have to be made regarding sample selection, along with the selection and construction of explanatory variables and control measures. Based on our analyses, we find a positive effect of both income and net worth on fertility for men, which is more pronounced for white men and for transitions to first and second births. Income tends to have a negative effect on fertility for women, while net worth is more likely to positively predict fertility. Different reproductive strategies among different groups within the same population highlight the complexity of the reproductive ecology of industrial societies. These results differ in a number of respects from other analyses using the same database. We suggest this reflects the impossibility of producing a definitive analysis, rather than a failure to identify the “correct” analytical strategy. Finally, we discuss how these findings inform us about (mal)adaptive decision-making. (shrink)

Is fertility relevant to evolutionary analyses conducted in modern industrial societies? This question has been the subject of a highly contentious debate, beginning in the late 1980s and continuing to this day. Researchers in both evolutionary and social sciences have argued that the measurement of fitness-related traits (e.g., fertility) offers little insight into evolutionary processes, on the grounds that modern industrial environments differ so greatly from those of our ancestral past that our behavior can no longer be expected to be (...) adaptive. In contrast, we argue that fertility measurements in industrial society are essential for a complete evolutionary analysis: in particular, such data can provide evidence for any putative adaptive mismatch between ancestral environments and those of the present day, and they can provide insight into the selection pressures currently operating on contemporary populations. Having made this positive case, we then go on to discuss some challenges of fertility-related analyses among industrialized populations, particularly those that involve large-scale databases. These include “researcher degrees of freedom” (i.e., the choices made about which variables to analyze and how) and the different biases that may exist in such data. Despite these concerns, large datasets from multiple populations represent an excellent opportunity to test evolutionary hypotheses in great detail, enriching the evolutionary understanding of human behavior. (shrink)

A person of good character treats other sentient beings with care and compassion. Yet virtue ethics apparently has trouble accounting for the moral status of nonhuman animals because of its focus on excellent character traits, rather than the moral “patient,” and because of its non-codifiability, at least in some forms. The task of this article is to answer the question: How can virtue ethics account for the moral value of nonhuman animals in the context of biomedical research? I argue that (...) it can do so through attention to animal good lives, human-animal bonds, and the virtues themselves. The virtue ethics resources I draw on to support nonhuman animal value are not the same as those typically brought to bear in moral status discussions, but I suggest that moral status as usually conceived has its own problems as a tool for use in practical contexts like animal research. (shrink)

Recent advances in next generation sequencing along with high hopes for genomic medicine have inspired interest in genomic research with the newly dead. However, applicable law does not adequately determine ethical or policy responses to such research. In this paper we propose that such research stands at a crossroads between other more established biomedical clinical and research practices. In addressing the ethical and policy issues raised by a particular research project within our institution comparatively with these other practices, we illustrate (...) the moral significance of paying careful heed to where one looks for guidance in responding to ethical questions raised by a novel endeavor. (shrink)

In phase I clinical trials, healthy volunteers are dosed with investigational drugs and subjected to blood draws and other bodily monitoring procedures. In exchange, they are paid. Healthy volunteers are, in a very direct sense, selling access to their bodies for pharmaceutical companies and their associates to run drugs through. In his ethnographic study of socalled professional guinea pigs, Roberto Abadie writes, "Paid volunteers are well aware of the demand for an idealized, perfectly healthy volunteer. They also realize that their (...) body is a valued commodity in clinical trials research". It is perhaps surprising, then, that commodification is little discussed in the bioethics literature on phase I... (shrink)

Imprisonment may sometimes be a justified form of punishment. Yet the U.S. carceral system suffers from appalling problems of justice—in who is put into prisons, in how imprisoned people are treated, and in downstream personal and community health impacts. Medical personnel working in prisons and jails take on risky work for highly vulnerable and underserved patients. They are to be lauded for their professional commitments. Yet at the same time, prison care undercuts the ability of medical personnel to uphold their (...) own professional standards and sometimes fails in even basic health protection. Doctors in prisons are stuck between their commitment to vulnerable patients and complicity in a system that requires their participation to uphold its constitutionality. Medical ethics is frayed in prisons, and the problem deserves our attention. (shrink)

The required role of the psychiatric‐mental health nurse in primary health‐care: an augmented Delphi study An augmented Delphi study was employed to elicit the perceptions of CPNs, GPs, social workers, managers of psychiatric nursing services and health service purchasers in England, on the role required of a psychiatric (mental health) nurse in primary health care. In the final stage of the study, users of mental health service were enlisted in a verification study of the emergent findings. A broad consensus emerged (...) that a gap existed in mental health services in primary care. This was perceived as placing a large burden on GPs, which might be reduced by the appropriate development of community psychiatric‐mental health nursing. The study suggested the possibilities for development of a ‘mental health nurse consultant’ role, which might augment the current CPN role, within which the nurse might offer not only direct patient care, but also support to members of the primary care team. (shrink)

Purpose: We sought to examine the ethical, legal, and social implications (ELSI) literature research and scholarship types, topics, and contributing community fields of training as a first step to charting the broader ELSI community’s future priorities and goals. Methods: We categorized 642 articles and book chapters meeting inclusion criteria for content in both human genetics or genomics and ethics or ELSI during a 5-year period (2003–2008) according to research and scholarship types, topics, and the area of advanced training of the (...) first-listed author. Research and scholarship type categories were developed and characterized through in-depth review of 95 randomly sampled publications from the larger group. Results: There is a single dominant approach to ELSI, which focuses on ethical and other social issues “downstream” of advances in genomics, the contributors to which predominately have advanced training in medicine or science fields other than social science. A comparatively low percentage of publications primarily offer policy recommendations, and these are much more likely to be written by those with advanced training in law than is the case for the literature as a whole. Social science studies predominately employ qualitative methods and vary significantly with respect to the extent and types of recommendations offered. Two further types of ELSI research and scholarship offer alternative models for so-called “normative” work in this field. Conclusion: Considering topics, training, and types of ELSI research and scholarship from the most recent past allows for a baseline perspective that is sorely needed in charting this field’s future course. (shrink)

From the late 1950s through the early 1970s, Harry F. Harlow's primate laboratory at the University of Wisconsin–Madison undertook a series of studies on infant rhesus macaque monkeys that gained the attention of both animal welfare advocates and the scientific community.1 Establishing one of the first primate research laboratories in 1932, Harlow began his career as a primate researcher by studying primate learning capabilities and shredding previous assumptions within psychology that primates were restricted to the conditioned learning of a rat. (...) As his need for subjects in particular age ranges and easily susceptible to study grew in the 1950s, he again broke research ground by establishing a captive breeding... (shrink)

Biodefense and emerging infectious disease animal research aims to avoid or ameliorate human disease, suffering, and death arising, or potentially arising, from natural outbreaks or intentional deployment of some of the world’s most dreaded pathogens. Top priority research goals include finding vaccines to prevent, diagnostic tools to detect, and medicines for smallpox, plague, ebola, anthrax, tularemia, and viral hemorrhagic fevers, among many other pathogens (National Institute of Allergy and Infectious Diseases [NIAID] priority pathogens). To this end, increased funding for conducting (...) research, developing research facilities, and purchasing (stockpiling) developed vaccines, diagnostic tools, and therapeutics .. (shrink)

This chapter contains sections titled: Introduction Background Incentives and guidance from the criminal law Other regulatory incentives and guidance Civil incentives Conclusion.

This book review essay discusses Principles of Animal Research Ethics (2020), by Tom L. Beauchamp and David DeGrazia.

In the United States at present, the death penalty is a possible sentence in 31 out of 50 states, as well as within the military and for federal cases. In the U.S., numbers of executions are declin...

This article offers a philosophical reading of Elena Ferrante’s Neapolitan Novels by bringing the tetralogy into conversation with Jean-Paul Sartre’s phenomenological ontology. In addition to highlighting the striking similarities between Ferrante’s notion of smarginatura (‘dissolving margins’) and Sartre’s depiction of the existential sensation of nausea, this article argues that the two main characters of Ferrante’s tetralogy, Lila Cerullo and Elena Greco, respectively exemplify Sartre’s ontological categories of ‘being-for-oneself’ and ‘being-for-others’ in his phenomenological account of human existence. However, Ferrante—like Simone de (...) Beauvoir before her—goes beyond Sartre in her ability to offer an account of the imperfect existential freedom of women, who remain constrained in their pursuit of authenticity by social and cultural factors. Drawing on Ferrante’s assertion that readers ‘are both Elena and Lila’ as well as her recent claim that there are within her two kinds of writing (broadly equated to the ‘compliant’ Elena and ‘impetuous’ Lila), we establish Ferrante’s exploration of the ambivalent features of human subjectivity as a consummate philosophical and literary project. (shrink)

Moral psychology studies the features of cognition, judgement, perception and emotion that make human beings capable of moral action. Perspectives from feminist and race theory immensely enrich moral psychology. Writers who take these perspectives ask questions about mind, feeling, and action in contexts of social difference and unequal power and opportunity. These essays by a distinguished international cast of philosophers explore moral psychology as it connects to social life, scientific studies, and literature.

The Covid-19 crisis has clarified the demand for an ultra-brief single-session, online, theory-led, empirically supported, psychological intervention for managing stress and improving well-being, especially for people within organizational settings. We designed and delivered “4Ds for Dealing with Distress” during the crisis to address this need. 4Ds unifies a spectrum of familiar emotion regulation strategies, resilience exercises, and problem-solving approaches using perceptual control theory and distils them into a simple four-component rubric. In essence, the aim is to reduce distress and restore (...) wellbeing, both in the present moment through current actions, and through expressing longer-term goal conflicts to discover new perspectives that arise spontaneously after sufficient time and consideration. The intervention is user-led in that it draws on users’ own idiosyncratic and pre-existing experiences, knowledge, skills and resources to help them apply an approach, or combination of approaches, that are proportionate and timed to the nature and context of the stress they are experiencing. In this article we review the empirical basis of the approach within experimental, social, biological and clinical psychology, illustrate the novel and time-efficient delivery format, describe its relevance to sports and exercise, summarise feedback from the recipients of the intervention to date, and describe the directions for future evaluation. (shrink)

In this brief, we argue that there is a diversity of ways in which humans (Homo sapiens) are ‘persons’ and there are no non-arbitrary conceptions of ‘personhood’ that can include all humans and exclude all nonhuman animals. To do so we describe and assess the four most prominent conceptions of ‘personhood’ that can be found in the rulings concerning Kiko and Tommy, with particular focus on the most recent decision, Nonhuman Rights Project, Inc v Lavery.

Advances in genomics have led to calls for developing population-based preventive genomic sequencing programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the generation, use, and handling of their genomic information. In this article we examine whether PGS programs should offer individuals the opportunity to selectively opt out of the (...) sequencing or analysis of specific genomic conditions or whether PGS should be implemented using an all-or-nothing panel approach. We conclude that any responsible scale-up of PGS will require a menu approach that may seem impractical to some, but that draws its justification from a rich mix of normative, legal, and practical considerations. (shrink)

This article empirically examines how healthy volunteers evaluate and make sense of the risks of phase I clinical drug trials. This is an ethically important topic because healthy volunteers are exposed to risk but can gain no medical benefit from their trial participation. Based on in-depth qualitative interviews with 178 healthy volunteers enrolled in various clinical trials, we found that participants focus on myriad characteristics of clinical trials when assessing risk and making enrolment decisions. These factors include the short-term and (...) long-term effects; required medical procedures; the type of trial, including its design, therapeutic area of investigation, and dosage of the drug; the amount of compensation; and trust in the research clinic. In making determinations about the study risks, participants rely on information provided during the consent process, their own and others’ experiences in clinical trials, and comparisons among studies. Our findings indicate that the informed consent process succeeds in communicating well about certain types of risk information while simultaneously creating lacunae that are problematically filled by participants through their collective experiences and assumptions about risk. We discuss the ethical implications of these findings and make recommendations for improving the consent process in healthy volunteer trials. (shrink)

This article empirically examines how healthy volunteers evaluate and make sense of the risks of phase I clinical drug trials. This is an ethically important topic because healthy volunteers are exposed to risk but can gain no medical benefit from their trial participation. Based on in-depth qualitative interviews with 178 healthy volunteers enrolled in various clinical trials, we found that participants focus on myriad characteristics of clinical trials when assessing risk and making enrolment decisions. These factors include the short-term and (...) long-term effects; required medical procedures; the type of trial, including its design, therapeutic area of investigation, and dosage of the drug; the amount of compensation; and trust in the research clinic. In making determinations about the study risks, participants rely on information provided during the consent process, their own and others’ experiences in clinical trials, and comparisons among studies. Our findings indicate that the informed consent process succeeds in communicating well about certain types of risk information while simultaneously creating lacunae that are problematically filled by participants through their collective experiences and assumptions about risk. We discuss the ethical implications of these findings and make recommendations for improving the consent process in healthy volunteer trials. (shrink)

This article empirically examines how healthy volunteers evaluate and make sense of the risks of phase I clinical drug trials. This is an ethically important topic because healthy volunteers are exposed to risk but can gain no medical benefit from their trial participation. Based on in-depth qualitative interviews with 178 healthy volunteers enrolled in various clinical trials, we found that participants focus on myriad characteristics of clinical trials when assessing risk and making enrolment decisions. These factors include the short-term and (...) long-term effects; required medical procedures; the type of trial, including its design, therapeutic area of investigation, and dosage of the drug; the amount of compensation; and trust in the research clinic. In making determinations about the study risks, participants rely on information provided during the consent process, their own and others’ experiences in clinical trials, and comparisons among studies. Our findings indicate that the informed consent process succeeds in communicating well about certain types of risk information while simultaneously creating lacunae that are problematically filled by participants through their collective experiences and assumptions about risk. We discuss the ethical implications of these findings and make recommendations for improving the consent process in healthy volunteer trials. (shrink)