This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept (...) of ‘integrating’ empirical methods and ethical argument as a standard for research practice within empirical bioethics. (shrink)

Since her death in 1986 and the publication of her letters and diaries in 1990, interest in the philosophy of Simone de Beauvoir has never been greater. In this engaging and timely volume, Margaret A. Simons and an international group of philosophers present 16 essays that reveal Beauvoir as one of the century’s most important and influential thinkers. As they set Beauvoir’s work into dialogue with Husserl, Merleau-Ponty, Heidegger, Foucault, Levinas, and others, these essays consider questions such as Beauvoir’s philosophical (...) relationship with Sartre; her ethic of the erotic; her views on marriage, motherhood, and female friendship; and her interpretations of oppression and liberation. This book discusses the full range of Beauvoir’s work, including The Second Sex, her unpublished diaries, autobiographical writings, novels, and philosophical essays, and broadens the scope and interpretive context of her unique philosophy. Contributors are Nancy Bauer, Debra Bergoffen, Suzanne Laba Cataldi, Edward Fullbrook, Eva Gothlin, Sara Heinämaa, Laura Hengehold, Stacy Keltner, Michèle Le Doeuff, Ann Murphy, Shannon M. Mussett, Margaret A. Simons, Ursula Tidd, Andrea Veltman, Karen Vintges, Julie Ward, Gail Weiss. (shrink)

The debate between Ursin (2019) and Wilkinson and colleagues (2019) in this issue of The American Journal of Bioethics underscores the long-standing theoretical controversy about the equivalence of...

Social norms are commonly understood as rules that dictate which behaviors are appropriate, permissible, or obligatory in different situations for members of a given community. Many researchers have sought to explain the ubiquity of social norms in human life in terms of the psychological mechanisms underlying their acquisition, conformity, and enforcement. Existing theories of the psychology of social norms appeal to a variety of constructs, from prediction-error minimization, to reinforcement learning, to shared intentionality, to domain-specific adaptations for norm acquisition. In (...) this paper, we propose a novel methodological and conceptual framework for the cognitive science of social norms that we call normative pluralism. We begin with an analysis of the explanatory aims of the cognitive science of social norms. From this analysis, we derive a recommendation for a reformed conception of its explanandum: a minimally psychological construct that we call normative regularities. Our central empirical proposal is that the psychological underpinnings of social norms are most likely realized by a heterogeneous set of cognitive, motivational, and ecological mechanisms that vary between norms and between individuals, rather than by a single type of process or distinctive norm system. This pluralistic approach, we suggest, offers a methodologically sound point of departure for a fruitful and rigorous science of social norms. (shrink)

A leading international expert on environmental issues, Shrader-Frechette brings a new standard of rigor to philosophical discussions of environmental justice in her latest work. Observing that environmental activists often value environmental concerns over basic human rights, she points out the importance of recognising that minority groups and the poor in general are frequently the biggest victims of environmental degradation, a phenomenon with serious social and political implications that the environmental movement has failed to adequately address. She argues for their equal (...) rights to 'environmental justice' and maintains that they should not have to bear most of the weight of the burdens of pollution and resource depletion. Advocating a greater awareness on the part of professionals in a position to help these victims, Shrader-Frechette proposes a more equitable distribution of environmental resources and, in doing so, makes an important contribution to the fields of environmental ethics and applied philosophy. (shrink)

This paper investigates the effect of the countervailing forces within organizations of formal systems that direct employees toward ethical acts and informal systems that direct employees toward fraudulent behavior. We study the effect of these forces on deception, a key component of fraud. The results provide support for an interactive effect of these formal and informal systems. The effectiveness of formal systems is greater when there is a strong informal “push” to do wrong; conversely, in the absence of a strong (...) push to do wrong, the strength of formal systems has little impact on fraudulent behavior. These results help to explain why the implementation of formal systems within organizations has been met with mixed results and identifies when formal systems designed to promote ethical behavior will be most efficacious. (shrink)

A growing body of empirical research examines the effects of the so-called “social determinants of health” on health and health inequalities. Several high-profile publications have issued policy recommendations to reduce health inequalities based on a specific interpretation of this empirical research as well as a set of normative assumptions. This article questions the framework defined by these assumptions by focusing on two issues: first, the normative judgments about the fairness of particular health inequalities; and second, the policy recommendations issued on (...) this basis. We argue that the normative underpinnings of the approach are insufficiently supported and that the policy recommendations do not necessarily follow from the arguments provided. Furthermore, while many of the policies recommended—such as improving people's living conditions and reducing inequalities in wealth and power—are justified in their own right, the way these recommendations are tied to health is problematic. (shrink)

The accidents at Three Mile Island and Chemobyl have slowed the development of commercial nuclear fission in most industrialized countries, although nuclear proponents are trying to develop smaller, allegedly “fail-safe” reactors. Regardless of whether or not they succeed, we will face the problem of radioactive wastes for the next million years. After a brief, “revisionist” history of the radwaste problem, Isurvey some of the major epistemological and ethical difficulties with storing nuclear wastes and outline four ethical dilemmas common to many (...) technological and environmental controversies. I suggest two solutions to these ethical dilemmas and show why they are also economical and realistic proposals. (shrink)

Rapid advancements in artificial intelligence and machine learning (AI/ML) in healthcare raise pressing questions about how much users should trust AI/ML systems, particularly for high stakes clinical decision-making. Ensuring that user trust is properly calibrated to a tool’s computational capacities and limitations has both practical and ethical implications, given that overtrust or undertrust can influence over-reliance or under-reliance on algorithmic tools, with significant implications for patient safety and health outcomes. It is, thus, important to better understand how variability in trust (...) criteria across stakeholders, settings, tools and use cases may influence approaches to using AI/ML tools in real settings. As part of a 5-year, multi-institutional Agency for Health Care Research and Quality-funded study, we identify trust criteria for a survival prediction algorithm intended to support clinical decision-making for left ventricular assist device therapy, using semistructured interviews (n=40) with patients and physicians, analysed via thematic analysis. Findings suggest that physicians and patients share similar empirical considerations for trust, which were primarilyepistemicin nature, focused on accuracy and validity of AI/ML estimates. Trust evaluations considered the nature, integrity and relevance of training data rather than the computational nature of algorithms themselves, suggesting a need to distinguish ‘source’ from ‘functional’ explainability. To a lesser extent, trust criteria were also relational (endorsement from others) and sometimes based on personal beliefs and experience. We discuss implications for promoting appropriate and responsible trust calibration for clinical decision-making use AI/ML. (shrink)

This is the first book on practical philosophy of science and how to practically evaluate scientific findings that have life-and-death consequences. Showing how to uncover scores of scientific flaws -- typically used by special interests who try to justify their deadly pollution -- this book aims to liberate the many potential victims of environmentally-induced disease and death.

In this book Shrader-Frechette reveals how politicians, campaign contributors, and lobbyists--and their power over media, advertising, and public relations--have conspired to cover up environmental disease and death.

Introduction: We discuss Carol Gilligan's original concept of mature care in the light of the altruistic approach to caring and good clinical judgment. Discussion: In particular, we highlight how the concept of mature care can capture important challenges in today's nursing. Further, we illuminate how mature care might differ normatively from an altruistic approach to caring and the traditional prudential virtues in nursing. We also discuss similarities between mature care and virtue ethics. Conclusion: For nursing and nurses' identity, in today's (...) health care system that is increasingly pressured to ‘produce' health, we believe it is important to both developing further theories on mature care and having normative discussions about care. (shrink)

Lifelong smokers lose on average a decade of life vis-à-vis non-smokers. Globally, tobacco causes about 5–6 million deaths annually. One billion tobacco-related deaths are predicted for the 21st century, with about half occurring before the age of 70. In this paper, we consider a complete ban on the sale of cigarettes and find that such a ban, if effective, would be justified. As with many policy decisions, the argument for such a ban requires a weighing of the pros and cons (...) and how they impact on different individuals, both current and future. The weightiest factor supporting a ban, we argue, is the often substantial well-being losses many individuals suffer because of smoking. These harms, moreover, disproportionally affect the disadvantaged. The potential gains in well-being and equality, we argue, outweigh the limits a ban places on individuals’ freedom, its failure to respect some individuals’ autonomous choice and the likelihood that it may, in individual cases, reduce well-being. (shrink)

We examined the relationship between leader behavioral integrity and leader behavioral courage using data from two studies. Results from Study 1, an online experiment, indicated that behavioral manifestations of leader behavioral integrity and situational adversity both have direct main effects on behavioral manifestations of leader courage. Results from Study 2, a multisource field study with practicing executives, indicated that leader behavioral courage fully mediates the effects of leader behavioral integrity on leader performance and leader executive image. Implications of these findings (...) and future directions are discussed. (shrink)

"Is it meaningful to call oneself a democrat? And if so, how do you interpret the word?" -/- In responding to this question, eight iconoclastic thinkers prove the rich potential of democracy, along with its critical weaknesses, and reconceive the practice to accommodate new political and cultural realities. Giorgio Agamben traces the tense history of constitutions and their coexistence with various governments. Alain Badiou contrasts current democratic practice with democratic communism. Daniel Bensaid ponders the institutionalization of democracy, while Wendy Brown (...) discusses the democratization of society under neoliberalism. Jean-Luc Nancy measures the difference between democracy as a form of rule and as a human end, and Jacques Rancière highlights its egalitarian nature. Kristin Ross identifies hierarchical relationships within democratic practice, and Slavoj Zizek complicates the distinction between those who desire to own the state and those who wish to do without it. -/- Concentrating on the classical roots of democracy and its changing meaning over time and within different contexts, these essays uniquely defend what is left of the left-wing tradition after the fall of Soviet communism. They confront disincentives to active democratic participation that have caused voter turnout to decline in western countries, and they address electoral indifference by invoking and reviving the tradition of citizen involvement. Passionately written and theoretically rich, this collection speaks to all facets of modern political and democratic debate. (shrink)

In 2014, the first child in the world was born after live uterus transplantation and IVF (UTx-IVF). Before and after this event, ethical aspects of UTx-IVF have been discussed in the medical and bioethical debate as well as, with varying intensity, in Swedish media and political fora. This article examines what comes to be identified as important ethical problems and solutions in the media debate of UTx-IVF in Sweden, showing specifically how problems, target groups, goals, benefits, risks and stakes are (...) delineated and positioned. It also demonstrates how specific assumptions, norms and values are expressed and used to underpin specific positions within this debate, and how certain subjects, desires and risks become shrouded or simply omitted from it. This approach—which we label the Ethics of the Societal Entrenchment-approach, inspired by Koch and Stemerding (1994)—allows us to discuss how the identification of something as the problem helps to shape what gets to be described as a solution, and how specific solutions provide frameworks within which problems can be stated and emphasised. We also offer a critical discussion of whether some of these articulations and formations should be seen as ethically troubling, and if so, why. (shrink)

Voluntary actions and their distal effects are intimately related in conscious awareness. When an expected effect follows a voluntary action, the experience of the interval between these events is compressed in time, a phenomenon known as ‘intentional binding’ . Current accounts of IB suggest that it serves to reinforce associations between our goals and our intention to attain these goals via action, and that IB only occurs for self-generated actions. We used a novel approach to study IB in the context (...) of shared intentions and actions. Pairs of participants judged the time of occurrence of actions and events attributed either to oneself or to another agent. We found that IB and subjective agency are not mutually predictive when an action can be attributed to only one of two ‘co-intending’ agents. Our results pose a complication for the prevailing view that IB and subjective agency reflect a common mechanism. (shrink)

Because of the problems associated with ecological concepts, generalizations, and proposed general theories, applied ecology may require a new "logic" of explanation characterized neither by the traditional accounts of confirmation nor by the logic of discovery. Building on the works of Grunbaum, Kuhn, and Wittgenstein, we use detailed descriptions from research on conserving the Northern Spotted Owl, a case typical of problem solving in applied ecology, to (1) characterize the method of case studies; (2) survey its strengths; (3) summarize and (...) respond to its shortcomings; and (4) investigate and defend its underlying "logic". (shrink)

It’s common to think that animals think. The cat thinks it is time to be fed, the monkey thinks the dominant is a threat. In order to make sense of what the other animals around us do, we ascribe mental states to them. The cat meows at the door because she wants to be let in. The monkey the monkey fails the test because he doesn’t remember the answer. -/- We explain animal actions in terms of their mental states, just (...) as we do with humans. One of us has argued that our science of animal minds requires that animal behavior be explained in such terms, and this doesn’t lead to a problematic use of folk psychology or anthropomorphism (Andrews 2016, 2020). By “anthropomorphism” we mean the attribution of human psychological, social, or normative properties to non-human animals “usually with the implication it is done without sound justification” (Shettleworth 2010, 477). And by “folk psychology” we mean the commonsense practice of seeing action as caused or accompanied by mental states like belief and desire, emotions, and seeing people in terms of their moods or personality traits, as well as categorizing complex behaviors as examples of grieving, communicating, or teaching (Andrews 2012). Psychologists routinely describe human behaviors in folk psychological terms, so it’s not that the categories are unscientific. The issue with using folk psychology to describe animal behavior is whether observable similarities between human and nonhuman behavior warrants thinking they involve the same psychological kind. The use of folk psychology when talking about animals need not be problematically anthropomorphic, though we need some evidentiary basis for filing animal behavior under some folk psychological category. -/- Despite it being commonplace for humans to attribute thoughts to animals, and there being arguments in favor of doing so in science, the nature of these mental states so many are happy to see in other animals remains unclear. To help bring some focus into the discussion, we will examine the attitude of belief. In this chapter we will examine the various possible statuses of animal beliefs, and the implications of those various views for our folk practice as well as our scientific investigations. (shrink)

The communicative interactions of very young children almost always involve language, gesture and directed gaze. In this study, ninety-six children were asked to determine the location of a hidden toy by understanding a communicative act that contained none of these familiar means. A light-and-sound mechanism placed behind the hiding place and illuminated by a centrally placed switch was used to indicate the location of the toy. After a communicative training session, an experimenter pressed the switch either deliberately or accidentally, and (...) with or without ostension. In no condition did she orient towards the hiding place. When the switch was pressed intentionally, children used the light-and-sound cue to find the toy – and tended to do so even in the absence of ostensive eye contact. When the experimenter pressed the switch accidentally, children searched randomly – demonstrating that they were tracking her communicative intent, and not merely choosing on the basis of salience. The absence of an effect of ostension contradicts research that ostension helps children to interpret the communicative intentions underlying unfamiliar signs. We explain this by concluding that while it may play a role in establishing a communicative interaction, it is not necessary for sustaining one; and that even with a highly novel communicative act – involving none of the means of communication on which children typically rely – three-year-olds can comprehend the communicative intentions behind an intentionally produced act. (shrink)

In this paper we aim to demonstrate the enormous ethical complexity that is prevalent in child obesity cases. This complexity, we argue, favors a cautious approach. Against those perhaps inclined to blame neglectful parents, we argue that laying the blame for child obesity at the feet of parents is simplistic once the broader context is taken into account. We also show that parents not only enjoy important relational prerogatives worth defending, but that children, too, are beneficiaries of that relationship in (...) ways difficult to match elsewhere. Finally, against the backdrop of growing public concern and pressure to intervene earlier in the life cycle, we examine the perhaps unintended stigmatizing effects that labeling and intervention can have and consider a number of risks and potential harms occasioned by state interventions in these cases. (shrink)

Many people argue that uncertain science—or controversial policies based on science—can be clarified primarily by greater attention to social/political values influencing the science and by greater attention to the vested interests involved. This paper argues that while such clarification is necessary, it is not a sufficient condition for achieving better science and policy; indeed its importance may be overemphasized. Using a case study involving the current, highly politicized controversy over the shape of dose‐response curves for biological effects of ionizing radiation, (...) the paper argues that the conflict could be significantly resolved through specific methodological improvements in the areas of metascience and philosophy of science. These improvements focus on taking account, respectively, of scale, data trimming, aggregation, measurability, and simplicity. (shrink)

Corporate Social Responsibility (CSR) programs are increasingly popular corporate marketing strategies. This paper argues that CSR programs can fall along a continuum between two endpoints: Institutionalized programs and Promotional programs. This classification is based on an exploratory study examining the variance of four responses from the consumer stakeholder group toward these two categories of CSR. Institutionalized CSR programs are argued to be most effective at increasing customer loyalty, enhancing attitude toward the company, and decreasing consumer skepticism. Promotional CSR programs are (...) argued to be more effective at generating purchase intent. Ethical and managerial implications of these preliminary findings are discussed. (shrink)

Volume 24, Issue 10, October 2024, Page 82-85.

Universal Human Rights brings new clarity to the important and highly contested concept of universal human rights. This collection of essays explores the foundations of universal human rights in four sections devoted to their nature, application, enforcement, and limits, concluding that shared rights help to constitute a universal human community, which supports local customs and separate state sovereignty. The eleven contributors to this volume demonstrate from their very different perspectives how human rights can help to bring moral order to an (...) otherwise divided world. (shrink)

In “Rethinking Norm Psychology,” Cecilia Heyes offers an insightful critique of nativist approaches to the psychology of norms and then proposes a plausible alternative model grounded in the theory of cognitive gadgets. We are broadly sympathetic to both the critique and to the cognitive-gadgets model, though our own pluralistic approach to the psychology of norms (Westra & Andrews, 2022) leads us to think that the range of psychological and ecological processes that contributes to our norm psychology is even more diverse (...) than what Heyes proposes. Here, though, we focus on Heyes’s conceptual critique of the nativist model and its explanatory target—namely, a system for representing and processing rules. Heyes’s criticism of this representational rule-based conception of the psychology of norms is quite sound. However, we will argue that Heyes’s alternative behavioral explanandum for the psychology of norms also fails to escape the gravitational pull of a rule-based approach. (shrink)

Assessing the hydrogeological modeling at the Yucca Mountain and Maxey Flats nuclear repositories reveals a number of important ways in which theory choice can go wrong. The two cases suggest that there are at least six important criteria for evaluating the suitability of scientific models to be used for predictions intended to serve public policy. More generally, the paper argues that applied philosophy of science, as practiced in environmental policymaking, requires one to employ ethical rationality as well as scientific rationality, (...) to heed the advice of the moral philosopher, not merely that of the epistemologist or philosopher of science. (shrink)

Eighty percent of (commercial) genetically engineered seeds (GES) are designed only to resist herbicides. Letting farmers use more chemicals, they cut labor costs. But developing nations say GES cause food shortages, unemployment, resistant weeds, and extinction of native cultivars when “volunteers” drift nearby. While GES patents are reasonable, this paper argues many patent policies are not. The paper surveys GE technology, outlines John Locke’s classic account of property rights, and argues that current patent policies must be revised to take account (...) of Lockean ethical constraints. After answering a key objection, it provides concrete suggestions for implementing its ethical conclusions. (shrink)

This article provides a critical comparative analysis of the substantive and procedural values and ethical concepts articulated in guidelines for allocating scarce resources in the COVID-19 pandemic. We identified 21 local and national guidelines written in English, Spanish, German and French; applicable to specific and identifiable jurisdictions; and providing guidance to clinicians for decision making when allocating critical care resources during the COVID-19 pandemic. US guidelines were not included, as these had recently been reviewed elsewhere. Information was extracted from each (...) guideline on: 1) the development process; 2) the presence and nature of ethical, medical and social criteria for allocating critical care resources; and 3) the membership of and decision-making procedure of any triage committees. Results of our analysis show the majority appealed primarily to consequentialist reasoning in making allocation decisions, tempered by a largely pluralistic approach to other substantive and procedural values and ethical concepts. Medical and social criteria included medical need, co-morbidities, prognosis, age, disability and other factors, with a focus on seemingly objective medical criteria. There was little or no guidance on how to reconcile competing criteria, and little attention to internal contradictions within individual guidelines. Our analysis reveals the challenges in developing sound ethical guidance for allocating scarce medical resources, highlighting problems in operationalising ethical concepts and principles, divergence between guidelines, unresolved contradictions within the same guideline, and use of naïve objectivism in employing widely used medical criteria for allocating ICU resources. (shrink)

The language of ‘experience’ in nursing researchThis paper is an analysis of how the signifier ‘experience’ is used in nursing research. We identify a set of issues we believe accompany the use of experience but are rarely addressed. These issues are embedded in a spectrum that includes ontological commitments, visions of the person/self and its relation to ‘society’, understandings of research methodology and the politics of nursing. We argue that a poststructuralist understanding of the language of experience in research opens (...) up additional ways to analyze the relationship between the conduct of nursing research and cultural/political commitments. (shrink)

Objective: To examine the role of explainability in machine learning for healthcare (MLHC), and its necessity and significance with respect to effective and ethical MLHC application. Study Design and Setting: This commentary engages with the growing and dynamic corpus of literature on the use of MLHC and artificial intelligence (AI) in medicine, which provide the context for a focused narrative review of arguments presented in favour of and opposition to explainability in MLHC. Results: We find that concerns regarding explainability are (...) not limited to MLHC, but rather extend to numerous well-validated treatment interventions as well as to human clinical judgment itself. We examine the role of evidence-based medicine in evaluating unexplainable treatments and technologies, and highlight the analogy between the concept of explainability in MLHC and the related concept of mechanistic reasoning in evidence-based medicine. Conclusion: Ultimately, we conclude that the value of explainability in MLHC is not intrinsic, but is instead instrumental to achieving greater imperatives such as performance and trust. We caution against the uncompromising pursuit of explainability, and advocate instead for the development of robust empirical methods to successfully evaluate increasingly inexplicable algorithmic systems. (shrink)

In this article, we advance the perspective that distinct emotions amplify different moral judgments, based on the emotion’s core appraisals. This theorizing yields four insights into the way emotions shape moral judgment. We submit that there are two kinds of specificity in the impact of emotion upon moral judgment: domain specificity and emotion specificity. We further contend that the unique embodied aspects of an emotion, such as nonverbal expressions and physiological responses, contribute to an emotion’s impact on moral judgment. Finally, (...) emotions play a key role in determining which issues acquire moral significance in a society over time, in a process known as moralization (Rozin, 1999). The implications of these four observations for future research on emotion and morality are discussed. (shrink)

Many healthcare practices expose people to risks of harmful outcomes. However, the major theories of moral philosophy struggle to assess whether, when and why it is ethically justifiable to expose individuals to risks, as opposed to actually harming them. Sven Ove Hansson has proposed an approach to the ethical assessment of risk imposition that encourages attention to factors including questions of justice in the distribution of advantage and risk, people’s acceptance or otherwise of risks, and the scope individuals have to (...) influence the practices that generate risk. This paper investigates the ethical justifiability of preventive healthcare practices that expose people to risks including overdiagnosis. We applied Hansson’s framework to three such practices: an ‘ideal’ breast screening service, a commercial personal genome testing service, and a guideline that lowers the diagnostic threshold for hypertension. The framework was challenging to apply, not least because healthcare has unclear boundaries and involves highly complex practices. Nonetheless, the framework encouraged attention to issues that would be widely recognised as morally pertinent. Our assessment supports the view that at least some preventive healthcare practices that impose risks including that of overdiagnosis are not ethically justifiable. Further work is however needed to develop and/or test refined assessment criteria and guidance for applying them. (shrink)

High-dose chemotherapy and autologous stem cell transplantation is used to treat some advanced malignancies. It is a traumatic procedure, with a high complication rate and significant mortality. ASCT patients and their carers draw on many sources of information as they seek to understand the procedure and its consequences. Some seek information from beyond orthodox medicine. Alternative beliefs and practices may conflict with conventional understanding of the theory and practice of ASCT, and ‘contested understandings’ might interfere with patient adherence to the (...) strict and demanding protocols required for successful ASCT.The present study, conducted in Sydney, Australia, examines narrative-style interviews with 10 sequentially recruited ASCT patients and nine of their carers conducted at the time of transplant and three months later. Transcripts were read for instances of mention of alternative advice, and for instances of contested understanding of information relevant to the transplant.Patients and carer pairs expressed closely concordant views about alternative advice. Five pairs were consulting alternative practitioners. Contested understanding was expressed in four domains—understandings of the transplant itself and its underlying theory, of the relationship between the components of the ‘transplant’, of the nature and role of stem cells, and of beliefs about bodily function and life-style. Contested understandings of the transplant treatment were expressed as predominantly personal interpretations of orthodox informationPatients and carers seemed to recognise that alternative and conventional systems were discordant, yet they were able to separate the two, and adhere to each practice without prejudicing their medical treatment. A single case of late, post-transplant repudiation of Western medicine is discussed to emphasise some of the possible determinants of dissonance when it does occur. (shrink)

The ethical principle of ‘respect for persons’ in clinical research has traditionally focused on protecting individuals’ autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals’ rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English or Spanish (...) about their experiences with respect in the study and perceptions of how researchers in a hypothetical observational study could convey respect or a lack thereof. Most interviewees were female, identified as Hispanic/Latino or non-Hispanic white, reported annual household income under US$60 000 and did not have a Bachelor’s degree ; 30% had limited health literacy. We identified four key domains for demonstrating respect: personal study team interactions, with an emphasis on empathy, appreciation and non-judgment; study communication processes, including following up and sharing results with participants; inclusion, particularly ensuring materials are understandable and procedures are accessible; and consent and authorisation, including providing a neutral informed consent and keeping promises regarding privacy protections. While the experience of respect is inherently subjective, these findings highlight four key domains that may meaningfully demonstrate respect to potential and current research participants. Further empirical and normative work is needed to substantiate these domains and evaluate how best to incorporate them into the practice of research. (shrink)

Scheinerman (2023) proposes that at the Human Genome Editing Initiative international summit (held in March 2023) there should have been a parallel, separate Citizens’ Jury, and that the Human Geno...