Ethical arguments about caregiver responsibility and the limits of client autonomy rely on best evidence about the risks and benefits of medical interventions. But when the evidence is unclear, or when the peer-reviewed literature presents conflicting accounts of the evidence, how are clinicians and their clients to recommend or decide the best course of action? Conflicting evidence about the outcomes of home and hospital birth in the peerreviewed literature offers an opportunity to explore this question. We present the contrary evidence (...) and describe the social and cultural elements that influence the production of the science of birth, including professional, publication, and critical bias. We then consider how the science of birth has been used an misused in making ethical arguments about preferred place of birth. We conclude with a number of recommendations about the responsible use of the evidence, arguing for an “ethics of information” that can be drawn on to guide caregivers and clients in the use of evidence for clinical decision making. (shrink)

As one of the most compelling technologies for imaging the brain, functional MRI (fMRI) produces measurements and persuasive pictures of research subjects making cognitive judgments and even reasoning through difficult moral decisions. Even after centuries of studying the link between brain and behavior, this capability presents a number of novel significant questions. For example, what are the implications of biologizing human experience? How might neuroimaging disrupt the mysteries of human nature, spirituality, and personal identity? Rather than waiting for an ethical (...) agenda to emerge from some unpredictable combination of the concerns of ethicists and researchers, the attention of journalists, or after controversy is sparked by research that cannot be retracted, we queried key figures in bioethics and the humanities, neuroscience, media, industry, and patient advocacy in focus groups and interviews. We identified specific ethical, legal and social issues (ELSI) that highlight researcher obligations and the nonclinical impact of the technology at this new frontier. (shrink)

Some philosophers believe that swearing is morally innocent insofar as it is non‐abusive and vulgarities are being used, such as when people exclaim “s**t!” or “f**k!” This article shows this view to be mistaken. I start by arguing that taking offense at non‐abusive vulgar swearing is not irrational, before arguing that, even if it were, such swearing would still not always be justified. The fact that many of us find it hard to overcome profanity‐induced offense, along with the fact that (...) its existence is necessary for swearing to be possible, is sufficient to render even non‐abusive vulgar swearing sometimes wrong. I go on to assess the opposite view, according to which swearing, including non‐abusive vulgar swearing, is never justified, whereby two objections to this activity are addressed. According to the instrumentalization objection, the fact that swearing is possible only if at least some people are sometimes offended by the words that are used means that swearers treat those who are offended by their profanity as mere means. And according to the Ersatz objection, the fact that we can use inoffensive words to raise the emotional content of our speech renders swearing gratuitously offensive. Neither objection is found to be convincing. (shrink)

Websites can be effective in achieving their goals if they are used. The actual use, however, is often very low. This study aimed to assess the effect of visual complexity on intention to use websites, by using within-subjects manipulations of visual complexity and cognitive load. The results indicate that high visual complexity has a negative effect on intention to use websites = 14.81, p <.001), but this is fully mediated through attitude towards the website based on the first impression = (...) 13.41, p <.001). This clearly demonstrates the powerfulness of a first impression before interacting with a website and stresses the need for evidence-based insight into how this first impression is constituted. Keywords: visual complexity; websites; intention to use. (shrink)

ABSTRACT In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This ‘empirical turn’ is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral (...) experiences of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions? In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self‐justification and bias and can increase the credibility of the RE reached. (shrink)

In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This ‘empirical turn’ is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral experiences (...) of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions?In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self‐justification and bias and can increase the credibility of the RE reached. (shrink)

Volume 19, Issue 10, October 2019, Page 40-42.

We appreciate that the theme “ethics of ethics conferences” that we introduced in 2023 (Van der Graaf et al. 2023) was echoed by the previous and current presidents of the International Association...

It is commonly assumed that many, if not most, adult children have moral duties to visit their parents when they can do so at reasonable cost. However, whether such duties persist when the parents lose the ability to recognise their children, usually due to dementia, is more controversial. Over 40% of respondents in a public survey from the British Alzheimer’s Society said that it was “pointless” to keep up contact at this stage. Insofar as one cannot be morally required to (...) do pointless things, this would suggest that children are relieved of any duties to visit their parents. In what appears to be the only scholarly treatment of this issue, Claudia Mills has defended this view, arguing that our duties to visit our parents require a type of relationship that is lost when parents no longer remember who their children are. This article challenges Mills’ argument. Not only can children be duty-bound to visit parents who have lost the ability to recognise them, I argue that many children do in fact have such duties. As I show, these duties are grounded in any special interests that their parents have in their company; the fact that visiting their parents might allow them to comply with generic duties of sociability; and/or the fact that such visits allow them to express any gratitude that they owe their parents. (shrink)

Many individuals on the autism spectrum are hypersensitive to certain sensory stimuli. For this group, as well as for non-autistic individuals with sensory processing disorders, being exposed to e.g. fluorescent lights, perfume odours, and various sounds and noises can be real torment. In this article, I consider the normative implications of such offence for the design of office spaces, which is a topic that has not received any attention from philosophers. After identifying different ways in which the senses of hypersensitive (...) workers might be protected within these spaces, I show that many of such accommodations can be made at reasonable cost, before arguing that doing so ought to be a legal requirement. (shrink)

Sellars claims completeness for both the “manifest” and the “scientific images” in a way that tempts one to assume that they are independent of each other, while, in fact, they must share at least one common element: the language of individual and community intentions. I argue that this significantly muddies the waters concerning his claim of ontological primacy for the scientific image, though not in favor of the ontological primacy of the manifest image. The lesson I draw is that we (...) need to re-assess the aims of ontology. (shrink)

BackgroundGenome-wide association studies (GWAS) provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania.DiscussionWe explore ethical (...) issues in three key areas: protecting the interests of research participants, regulation of international collaborative genomics research and protecting the interests of scientists in low income countries. With regard to participants, important challenges are raised about community consultation and consent. Genomics research raises ethical and governance issues about sample export and ownership, about the use of archived samples and about the complexity of reviewing such large international projects. In the context of protecting the interests of researchers in low income countries, we discuss aspects of data sharing and capacity building that need to be considered for sustainable and mutually beneficial collaborations.SummaryMany ethical issues are raised when genomics research is conducted on populations that are characterised by lower average income and literacy levels, such as the populations included in MalariaGEN. It is important that such issues are appropriately addressed in such research. Our experience suggests that the ethical issues in genomics research can best be identified, analysed and addressed where ethics is embedded in the design and implementation of such research projects. (shrink)

It is not unusual for researchers to complain about institutional review board (IRB) oversight, but social scientists have a unique set of objections to the work of ethics committees. In an effort to better understand the problems associated with ethics review of social, behavioral, and economic sciences (SBES) research, this article examines 3 different aspects of research ethics committees: (a) the composition of review boards; (b) the guidelines used by these boards to review SBES - and in particular, behavioral health (...) - research; and (c) the actual deliberations of IRBs. The article concludes with recommendations for changes in the review process and with suggestions for filling the gaps in knowledge about the way IRBs work. (shrink)

Genetic engineering evokes a number of objections that are not directed at the negative effects the technique might have on the health and welfare of the modified animals. The concept of animal integrity is often invoked to articulate these kind of objections. Moreover, in reaction to the advent of genetic engineering, the concept has been extended from the level of the individual animal to the level of the genome and of the species. However, the concept of animal integrity was not (...) developed in the context of genetic engineering. Given this external origin, the aim of this paper is to critically examine the assumption that the concept of integrity, including its extensions to the level of the genome and the species, is suitable to articulate and justify moral objections more specifically directed at the genetic engineering of animals. (shrink)

While several scholars have argued that the rise of the internet has allowed an autistic culture to emerge over the past two decades, the question of whether people with autism or, as some members of this group refer to themselves, ‘autists’, are legally entitled to their own cultural rights has not been investigated. This article fills part of this lacuna by considering whether such entitlements exist from the perspective of human rights law. I start by showing that, insofar as autists (...) have their own culture, they are likely to be entitled to cultural rights under existing human rights treaties, before arguing that the absence of evidence that their beliefs, values, and behaviors are significantly shaped by distinct social norms renders it unclear whether they do in fact have their own culture. However, I end by arguing that, in terms of autists’ entitlements from a human rights perspective, little seems to depend on this. (shrink)

In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have (...) been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples’ ability to enact moral agency in making such decisions. (shrink)

ABSTRACT The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with (...) RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

Unearthing the radical potential at the heart of canonical political thought, this book uses the work of Foucault and Deleuze to re-imagine theory in a way that embraces difference and resistance.

Many liberal democracies have legal restrictions on nudism. This article argues that when public nudity does not pose a health threat, such restrictions are unjust. To vindicate this claim, I start by showing that there are two weighty interests served by the freedom to be naked in public. First, it promotes individual well-being; not only can nudist activities have great recreational value, recent studies have found that exposure to non-idealised naked bodies has a positive impact on body image, and, ultimately, (...) on life satisfaction. Second, public nudity has expressive value; apart from being a constitutive element of various spiritual and religious worldviews, public nudity is frequently used to protest social and political evils. As I go on to argue, the reasons for abolishing current anti-nudist laws that stem from these interests are not overridden, let alone cancelled, by the offence that public nudity might cause. Indeed, whereas my principal aim is to defend the freedom to be publicly naked when this poses no health threat, I will contend that states should recognise this liberty as a distinct legal right rather than try to subsume it under existing rights or secure it simply by excluding non-sexual, non-exhibitionist public nudity from existing laws against public indecency, sexual exhibition, and disorderly conduct. (shrink)

*Work on this paper was funded in part by NIH grant K01-AT00054, National Center for Complementary and Alternative Medicine. Know then thyself, presume not God to scan The proper study of mankind i...

Being the victim of a microaggression, that is, a relatively minor act of hostility that targets someone's (marginalized) social identity, can be distressing, but so can merely being in doubt over whether one has been the victim of such aggression. To address this last problem, Regina Rini has proposed a novel understanding of microaggressions that is meant to eliminate such doubts. On her “Ambiguous Experience Account,” whenever members of marginalized groups believe they might have been subjected to a microaggression, a (...) microaggression will have been committed even if the would‐be perpetrator was not motivated by prejudiced aggression. This article challenges this account on grounds of being incompatible with people's lived experiences, including those of the would‐be victims, and argues that we should instead accept the conventional account on which microaggressive acts must be consciously or unconsciously motivated by prejudiced aggression. At the same time, it shows that those falsely suspected of having committed microaggressions will still merit blame sometimes for having failed to signal that their behavior was respectful of others, which lessens the concerns that Rini's conceptual engineering seeks to address. I conclude by drawing out some implications for the debate on microaggressions and attributional ambiguity. (shrink)

Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the pediatric (...) oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)

Moral theory is an important guide to bioethical decision-making, but it can confuse and mislead those who offer ethical advice to clinicians and researchers, delaying decisions that must be made in a timely fashion. In this paper I examine the ways moral theory can lead bioethicists astray. Absent a sensitivity to the empirical realities of ethical problems, moral theory 1) contributes to the disappearance of the persons caught in an ethical quandary, 2) focuses on the puzzle-solving rather than examining the (...) conditions that generate moral problems, and 3) universalizes ethical dilemmas, overlooking local processes for resolving moral questions. Taken together, empirically informed moral theory and theoretically informed empirical research can help bioethicists transcend the is/ought problem in ethical work. (shrink)

Okay, Professor Turner is not Rodney King. He is not responding to bioethicists and social scientists running amuck, setting automobiles aflame, and pelting each other with rocks and broken bottles. He does not come right out and ask, “Why can't we all just get along?” But in its academic way, Turner's essay is an effort to negotiate a truce in the interdisciplinary squabbles that plague bioethics, a plea to move bioethics beyond the “misleading” and “unhelpful” “demarcation of disciplinary goals” that (...) leads to “dichotomous thinking” and “polemical accusations.”. (shrink)

Many liberal democracies have legal restrictions on nudism. This article argues that when public nudity does not pose a health threat, such restrictions are unjust. To vindicate this claim, I start by showing that there are two weighty interests served by the freedom to be naked in public. First, it promotes individual well-being; not only can nudist activities have great recreational value, recent studies have found that exposure to non-idealised naked bodies has a positive impact on body image, and, ultimately, (...) on life satisfaction. Second, public nudity has expressive value; apart from being a constitutive element of various spiritual and religious worldviews, public nudity is frequently used to protest social and political evils. As I go on to argue, the reasons for abolishing current anti-nudist laws that stem from these interests are not overridden, let alone cancelled, by the offence that public nudity might cause. Indeed, whereas my principal aim is to defend the freedom to be publicly naked when this poses no health threat, I will contend that states should recognise this liberty as a distinct legal right rather than try to subsume it under existing rights or secure it simply by excluding non-sexual, non-exhibitionist public nudity from existing laws against public indecency, sexual exhibition, and disorderly conduct. (shrink)

Scientific interest in genomics in Africa is on the rise with a number of funding initiatives aimed specifically at supporting research in this area. Genomics research on material of African origin raises a number of important ethical issues. A prominent concern relates to sample export, which is increasingly seen by researchers and ethics committees across the continent as being problematic. The concept of genomic sovereignty proposes that unique patterns of genomic variation can be found in human populations, and that these (...) are commercially, scientifically or symbolically valuable and in need of protection against exploitation. Although it is appealing as a response to increasing concerns regarding sample export, there are a number of important conceptual problems relating to the term. It is not clear, for instance, whether it is appropriate that ownership over human genomic samples should rest with national governments. Furthermore, ethnic groups in Africa are frequently spread across multiple nation states, and protection offered in one state may not prevent researchers from accessing the same group elsewhere. Lastly, scientific evidence suggests that the assumption that genomic data is unique for population groups is false. Although the frequency with which particular variants are found can differ between groups, such genes or variants per se are not unique to any population group. In this paper, the authors describe these concerns in detail and argue that the concept of genomic sovereignty alone may not be adequate to protect the genetic resources of people of African descent. (shrink)

Unemployment rates among autistic people are high even among those with low-support needs. While a variety of measures is needed to address this problem, this article defends one that has not been defended in detail and that has profound implications for contemporary hiring practices. Building on empirical research showing that job interviews are a major contributor to autistic unemployment, it argues that such interviews should be abolished in many cases for autistic and non-autistic people alike.

Donors to biobanks are typically asked to give blanket consent, allowing their donation to be used in any research authorized by the biobank. This type of consent ignores the evidence that some donors have moral, religious, or cultural concerns about the future uses of their donations – concerns we call “non-welfare interests”. The nature of non-welfare interests and their effect on willingness to donate to a biobank is not well understood. In order to better undersand the influence of non-welfare interests, (...) we surveyed a national sample of the US population using a probability-based internet panel. Logistic regression models assessed the demographic and attitudinal characteristics associated with participants’ willingness to give consent for unspecified future uses of their donation when presented with 7 research scenarios that raised possible non-welfare interest concerns. Most people had non-welfare interests that significantly affect their willingness to donate to a biobank using blanket consent. Some non-welfare interests are associated with subgroups but others are not. A positive attitude toward biomedical research in general was associated with increased willingness to donate, while concerns about privacy and being African American were associated with decreased willingness. Non-welfare interests matter and can diminish willingness to donate to a biobank. Our data suggest that trust in research promotes willingness to donate. Ignoring non-welfare interests could erode this trust. Donors’ non-welfare interests could be accommodated through greater transparency and easier access to information about the uses of donations. (shrink)

If religion once seemed to have played out its role in the intellectual and political history of Western secular modernity, it has now returned with a vengeance. In this engaging study, Hent de Vries argues that a turn to religion discernible in recent philosophy anticipates and accompanies this development in the contemporary world. Though the book reaches back to Immanuel Kant, Martin Heidegger, and earlier, it takes its inspiration from the tradition of French phenomenology, notably Emmanuel Levinas, Jean-Luc Marion, (...) and, especially, Jacques Derrida. Tracing how Derrida probes the discourse on religion, its metaphysical presuppositions, and its transformations, de Vries shows how this author consistently foregrounds the unexpected alliances between a radical interrogation of the history of Western philosophy and the religious inheritance from which that philosophy has increasingly sought to set itself apart. De Vries goes beyond formal analogies between the textual practices of deconstruction and so-called negative theology to address the necessity for a philosophical thinking that situates itself at once close to and at the farthest remove from traditional manifestations of the religious and the theological. This paradox is captured in the phrase adieu ( à dieu ), borrowed from Levinas, which signals at once a turn toward and a leave-taking from God -- and which also gestures toward and departs from the other of this divine other, the possibility of radical evil. Only by confronting such uncanny and difficult figures, de Vries claims, can one begin to think and act upon the ethical and political imperatives of our day. (shrink)

Love, sex, and physical intimacy are some of the most desired goods in life and they are increasingly being sought on dating apps such as Tinder, Bumble, and Badoo. For those who want a leg up in the chase for other people’s attention, almost all of these apps now offer the option of paying a fee to boost one’s visibility for a certain amount of time, which may range from 30 min to a few hours. In this article, I argue (...) that there are strong moral grounds and, in countries with laws against unconscionable contracts, legal ones for thinking that the sale of such visibility boosts should be regulated, if not banned altogether. To do so, I raise two objections against their unfettered sale, namely that it exploits the impaired autonomy of certain users and that it creates socio-economic injustices. (shrink)