This paper takes as its starting point a debate between Harry Frankfurt and J. David Velleman. Frankfurt argues that we need to resolve ambivalence since it necessarily threatens autonomy. Velleman challenges this claim, arguing that a desire to resolve ambivalence threatens autonomy when it prompts repression. I argue that the relationship between ambivalence and autonomy is more ambiguous than either theorist tends to acknowledge. In doing so, I recommend three features relevant for assessing whether or not ambivalence threatens autonomy.

I examine the standard view of dignity in Western literature and Metz’s African community view of dignity as a capacity for communal harmonious living. I argue that moral dignity is not just having a capacity for harmonious communal living, but the moral use of such capacity for the promotion of love, friendship, positive identity and active solidarity, which involves normatively prescriptive and evaluative elements. Thus, a plausible African communal conception of moral dignity, which is founded on a moral conception of (...) personhood and community, involves a combination of capacity and agency that is conceptually tied to communal responsibility and respect for self and others. This indicates that human capacities do not have an inherent moral worth. Capacities are instrumentally good and their worth depends on how they are used to promote the moral good of communal well-being, on which individual well-being or dignity depends. This view captures the various use-senses of dignity, addresses many of the problems with many of the analyses of dignity in the literature, and also indicates its relevance. (shrink)

This essay develops a framework for understanding what I call the ethics of reflexivity, that is, the norms that govern attitudes and actions with respect to one’s own worth. I distinguish five central aspects of the reflexive commitment to living in accordance with one’s personal ideals: the extent to which and manner in which one regards oneself from an evaluative point of view, the extent to which one cares about receiving the respect of others, the degree to which one interprets (...) one’s personal ideals in an individualistic or collective manner, the degree to which one’s commitment to living in accordance with one’s personal ideals is rigid or flexible, and the worthiness of one’s personal ideals. This framework, I argue, illuminates the nature and moral significance of virtuous and vicious forms of the character trait of pride. (shrink)

Patient and citizen participation is now regarded as central to the promotion of sustainable health and health care. Involvement efforts create and encounter many diverse ethical challenges that have the potential to enhance or undermine their success. This article examines different expressions of patient and citizen participation and the support health ethics offers. It is contended that despite its prominence and the link between patient empowerment and autonomy, traditional bioethics is insufficient to guide participation efforts. In addition, the turn to (...) a “social paradigm” of ethics in examinations of biotechnologies and public health does not provide an account of values that is commensurable with the pervasive autonomy paradigm. This exacerbates rather than eases tensions for patients and citizens endeavoring to engage with health. Citizen and patient participation must have a significant influence on the way we do health ethics if its potential is to be fulfilled. (shrink)

Recent articles published in this journal have highlighted the shortcomings of individualistic approaches to health promotion, and the potential contributions of relational analyses of autonomy to public health ethics. I argue that the latter helps to elucidate the former, by showing that an inadequate analysis of autonomy leads to misassignment of both forward-looking and backward-looking responsibility for health outcomes. Health promotion programmes predicated on such inadequate analyses are then ineffective, because they assign responsibility to agents whose social environment inhibits their (...) ability to act on such responsibilities; inequitable, because the social barriers to autonomous agency display a socio-economic gradient; and stigmatizing, because they license blaming of individuals for their own poor health without taking into account how reasonable it is to hold these individuals responsible, given the social barriers to autonomy they face. I further sketch how incorporating a relational understanding of autonomy could help to produce health promotion programmes that do not succumb to these difficulties, while avoiding coercive paternalism, exploring potential applications in ecological approaches to health promotion. (shrink)

Non-Invasive Prenatal Testing is a technology which provides information about fetal genetic characteristics very early in pregnancy by examining fetal DNA obtained from a sample of maternal blood. NIPT is a morally complex technology that has advanced quickly to market with a strong push from industry developers, leaving many areas of uncertainty still to be resolved, and creating a strong need for health policy that reflects women’s social and ethical values. We approach the need for ethical policy-making by studying the (...) use of NIPT and emerging policy in the province of Ontario, Canada. Using an adapted version of constructivist grounded theory, we conducted interviews with 38 women who have had personal experiences with NIPT. We used an iterative process of data collection and analysis and a staged coding strategy to conduct a descriptive analysis of ethics issues identified implicitly and explicitly by women who have been affected by this technology. The findings of this paper focus on current ethical issues for women seeking NIPT, including place in the prenatal pathway, health care provider counselling about the test, industry influence on the diffusion of NIPT, consequences of availability of test results. Other issues gain relevance in the context of future policy decisions regarding NIPT, including funding of NIPT and principles that may govern the expansion of the scope of NIPT. These findings are not an exhaustive list of all the potential ethical issues related to NIPT, but rather a representation of the issues which concern women who have personal experience with this test. Women who have had personal experience with NIPT have concerns and priorities which sometimes contrast dramatically with the theoretical ethics literature. These findings suggest the importance of engaging patients in ethical deliberation about morally complex technologies, and point to the need for more deliberative patient engagement work in this area. (shrink)

This article looks at how and why addiction should be understood as a ‘sociorelational’ disorder, and what this implies on a policy level in terms of the treatment and prevention of addiction. In light of scientific research, we argue that the neurobiological changes that underlie addiction are heavily influenced by sociorelational processes. We thereby advocate for a conceptual approach in which autonomy in addiction is a sociorelational concept, and social environments are considered autonomy undermining or autonomy promoting. We then discuss (...) the various implications this should have on policies. (shrink)

An authoethnography explores the lived experiences of patients being in control and self-managing their chronic illness among their families and friends. Findings show that the current health discourse narrows down people to mere patients and gives rise to tensions. This article indicates that people with one or several chronic illnesses or disabilities are first of all full citizens with needs, values, and drives seeking a meaningful life. Fair possibilities ought to exist to satisfy their needs to belong, to care for (...) and to matter to others since these constitute an essential aspect of being human. (shrink)

Accounts of adaptive preferences are of two kinds: well-being accounts fully theorized for their own sake and political accounts theorized to facilitate the political project of reducing oppression and marginalization. Given their practical role, the latter are often less fully theorized, and are therefore less robust to theoretical criticism. In this paper, I first draw on well-being accounts to identify the well-theorized elements that political accounts should want to adopt in order to strengthen their project and avoid common criticisms. Second, (...) I appeal to the political project to show the shortcomings of the well-being accounts on which I draw. (shrink)

A few years ago, it was common for philosophers to begin inquiry into hope by noting that the subject has received little attention in the philosophical literature. But our ability to make this claim is quickly coming to an end; hope has been earning increasing recognition in the discipline, with philosophers exploring important questions related to the nature of hope, what makes hope rational, and how hope is connected to human wellbeing and agency. Despite this recent interest, however, there remains (...) very little discussion of the social and political dimensions of hope. My aim in this paper is to demonstrate the importance of a feminist perspective in bringing these dimensions into fuller view. I argue that feminist insights into the relational nature of the self, which call attention to where selves are socially situated in relation to others, enable a richer understanding of the nature and value of hope. (shrink)

There can be little doubt, at least in the Western world, that autonomy is the ruling principle in contemporary bioethics. In spite of its ‘triumph’ however, the dominance of the utilitarian concept of autonomy is being increasingly questioned. In this paper, I explore the nature of autonomy, how it came to displace the Hippocratic tradition in medicine and how different concepts of autonomy have evolved. I argue that the reduction of autonomy to ‘the exercise of personal choice’ in medicine has (...) led to a ‘tyranny of autonomy’ which can be inimical to ethical medical practice rather than conducive to it. I take the case of Kerrie Wooltorton as an illustration of how misplaced adherence to respect for patient autonomy can lead to tragic consequences. An analysis of autonomy based on the work of Rachel Haliburton is described and applied to the role of autonomy in a recent bioethical debate — that arising from Savulescu's proposal that conscientious objection by health-care professionals should not be permit.. (shrink)

In recent years, informed consent has been suggested as a way to deal with risks posed by engineered nanomaterials. We argue that while we can learn from experiences with informed consent in treatment and research contexts, we should be aware that informed consent traditionally pertains to certain features of the relationships between doctors and patients and researchers and research participants, rather than those between producers and consumers and employers and employees, which are more prominent in the case of engineered nanomaterials. (...) To better understand these differences, we identify three major relational factors that influence whether valid informed consent is obtainable, namely dependency, personal proximity, and existence of shared interests. We show that each type of relationship offers different opportunities for reflection and therefore poses distinct challenges for obtaining valid informed consent. Our analysis offers a systematic understanding of the possibilities for attaining informed consent in the context of nanomaterial risks and makes clear that measures or regulations to improve the obtainment of informed consent should be attuned to the specific interpersonal relations to which it is supposed to apply. (shrink)

In recent years, informed consent has been suggested as a way to deal with risks posed by engineered nanomaterials. We argue that while we can learn from experiences with informed consent in treatment and research contexts, we should be aware that informed consent traditionally pertains to certain features of the relationships between doctors and patients and researchers and research participants, rather than those between producers and consumers and employers and employees, which are more prominent in the case of engineered nanomaterials. (...) To better understand these differences, we identify three major relational factors that influence whether valid informed consent is obtainable, namely dependency, personal proximity, and existence of shared interests. We show that each type of relationship offers different opportunities for reflection and therefore poses distinct challenges for obtaining valid informed consent. Our analysis offers a systematic understanding of the possibilities for attaining informed consent in the context of nanomaterial risks and makes clear that measures or regulations to improve the obtainment of informed consent should be attuned to the specific interpersonal relations to which it is supposed to apply. (shrink)

Women are over-represented within alternative medicine, both as consumers and as service providers. In this paper, I show that the appeal of alternative medicine to women relates to the neglect of women’s health needs within scientific medicine. This is concerning because alternative medicine is severely limited in its therapeutic effects; therefore, those who choose alternative therapies are liable to experience inadequate healthcare. I argue that while many patients seek greater autonomy in alternative medicine, the absence of an evidence base and (...) plausible mechanisms of action leaves patients unable to realize meaningful autonomy. This seems morally troubling, especially given that the neglect of women’s needs within scientific medicine seems to contribute to preferences for alternative medicine. I conclude that the liberatory credentials of alternative medicine should be questioned and make recommendations to render scientific medicine better able to meet the needs of typical alternative medicine consumers. (shrink)

The article argues that feminist emancipation, understood as practices and discourses of self-development and of solidarity as empowerment, has become entangled with the neoliberal project. Indeed, emancipation as self-improvement has become synonymous with moral regulation projects that seek to adapt women to global capitalism. The article explores the relation between emancipation and neoliberal regulation from a situated approach by addressing the experience of Latin American feminisms, with a particular focus on Chile. This approach recognizes by implication that Latin American feminisms (...) are co-extensive, or coeval, with North American and European ones, and are not merely derivative forms. (shrink)

Der Beitrag analysiert Techniken öffentlicher Gesundheitskommunikation und skizziert im Ausblick Minimalbedingungen für ihre ethische Vertretbarkeit. Dazu wird erstens an einem aktuellen Beispiel veranschaulicht, wie mittels Text und Bild die Öffentlichkeit überzeugt werden soll, ein bestimmtes Gesundheitsverhalten an den Tag zu legen. Zweitens werden anhand der internationalen Ethik-Debatte fünf Grundtypen von Techniken in der Gesundheitskommunikation (Information, Argumentation, Persuasion, Manipulation und Zwang) rekonstruiert und entlang von Mittel, Zweck, Folgen für Adressaten sowie Implikationen für Autonomie aus ethischer Sicht unterschieden. Am besonders ambivalenten Beispiel (...) der Persuasion wird dann drittens diskutiert, welche ethischen Fallstricke es bei Gesundheitskommunikation zu bedenken gibt. Schließlich zeigen wir argumentativ auf, dass es in sensiblen bioethischen Themenfeldern wichtig ist, zwischen verschiedenen Techniken der Gesundheitskommunikation analytisch zu differenzieren. Ziel sollte die Ermöglichung einer fairen und transparenten Diskussion für breite Bevölkerungsgruppen sein. (shrink)

The article first develops an account of autonomy, explaining individual autonomy by means of three normative components and then discussing two objections. The first objection claims that autonomy has to be thought of as essentially relational; this objection is refuted. The second objection, labeled the skeptical objection, claims that we simply do not live autonomously, nor could we ever. Reference is made to novels by Iris Murdoch to present a skeptical solution to this objection.

Both living donor transplantation and human subjects research expose one set of individuals to clinical risks for the clinical benefits of others. In the Belmont Report, the National Commission for the Protection of Human Subjects of Biomedical and Behavior Research articulated three principles to serve as the basis for a research ethics framework: respect for persons, beneficence and justice. In contrast, living donor transplantation lacks a framework. In this manuscript, we adapt the three principles articulated in the Belmont Report to (...) serve as the foundation for an ethics framework for living donor transplantation which we supplement with the principles of vulnerability and responsibility. The National Commission supported additional protections for vulnerable groups of potential research participants. In 2001, Kenneth Kipnis effectively argued that the concept of vulnerable groups failed to explore in what ways particular groups of people were vulnerable, thereby risking unnecessary protections for some and inadequate protections for others. He proposed a taxonomy that explored different types of vulnerabilities that all research participants may experience to provide a more robust framework for human subjects protections, which we adapt to living donors. Robert Goodin claims that health professionals, who stand in special relationship with patients, are responsible for promoting and protecting their well-being. In living donor transplantation, the donor transplant team is responsible for empowering prospective donors to address their vulnerabilities and/or for protecting those who cannot by disqualifying them from donation. (shrink)

Most accounts of immigration ethics implicitly rely upon neoclassical migration theory, which understands migration as the result of poverty and unemployment in sending countries. This paper argues that neoclassical migration theory assumes an account of the human person as solely an autonomous rational agent which then leads to ethics of migration which overemphasize freedom and self-determination. This tendency to assume that migration works as neoclassical migration theory describes is shared by political philosophers, such as Joseph Carens, Michael Walzer, and David (...) Miller. This paper argues that all three philosophers incorrectly frame migration as a contest between the freedom of the migrant and the communal self-determination of the political community. Migration systems theory is presented as a theory that draws upon a relationally embedded understanding of autonomy in order to begin to develop a migration systems ethics. This paper concludes by arguing that the central ethical category for an ethics of migration is not freedom or self-determination, but justice-in-relation. (shrink)

'Brainjacking’ refers to the exercise of unauthorized control of another’s electronic brain implant. Whilst the possibility of hacking a Brain–Computer Interface (BCI) has already been proven in both experimental and real-life settings, there is reason to believe that it will soon be possible to interfere with the software settings of the Implanted Pulse Generators (IPGs) that play a central role in Deep Brain Stimulation (DBS) systems. Whilst brainjacking raises ethical concerns pertaining to privacy and physical or psychological harm, we claim (...) that the possibility of brainjacking DBS raises particularly profound concerns about individual autonomy, since the possibility of hacking such devices raises the prospect of third parties exerting influence over the neural circuits underpinning the subject’s cognitive, emotional and motivational states. However, although it seems natural to assume that brainjacking represents a profound threat to individual autonomy, we suggest that the implications of brainjacking for individual autonomy are complicated by the fact that technologies targeted by brainjacking often serve to enhance certain aspects of the user’s autonomy. The difficulty of ascertaining the implications of brainjacking DBS for individual autonomy is exacerbated by the varied understandings of autonomy in the neuroethical and philosophical literature. In this paper, we seek to bring some conceptual clarity to this area by mapping out some of the prominent views concerning the different dimension of autonomous agency, and the implications of brainjacking DBS for each dimension. Drawing on three hypothetical case studies, we show that there could plausibly be some circumstances in which brainjacking could potentially be carried out in ways that could serve to enhance certain dimensions of the target’s autonomy. Our analysis raises further questions about the power, scope, and necessity of obtaining prior consent in seeking to protect patient autonomy when directly interfering with their neural states, in particular in the context of self-regulating closed-loop stimulation devices. (shrink)

Research is a global enterprise requiring participation of both genders for generalizable knowledge; advancement of science and evidence based medical treatment. Participation of women in research is necessary to reduce the current bias that most empirical evidence is obtained from studies with men to inform health care and related policy interventions. Various factors are assumed to limit autonomy amongst the Yoruba women of western Nigeria. This paper seeks to explore the experience and understanding of autonomy by the Yoruba women in (...) relation to research participation. Focus is on factors that affect women's autonomous decision making in research participation. An exploratory qualitative approach comprising four focus group discussions, 42 in-depth interviews and 14 key informant interviews was used. The study permits a significant amount of triangulation, as opinions of husbands and religious leaders are also explored. Interviews and discussions were audiotaped and transcribed verbatim. Content analysis was employed for data analysis. Findings show that concepts of autonomy varied amongst the Yoruba women. Patriarchy, religion and culture are conceived to have negative impact on the autonomy of women in respect to research participation. Among the important findings are: 1) male dominance is strongly emphasized by religious leaders who should teach equality, 2) while men feel that by making decisions for women, they are protecting them, the women on the other hand see this protection as a way of limiting their autonomy. We recommend further studies to develop culturally appropriate and workable recruitment methods to increase women's participation in research. (shrink)

Ageism within the context of care has attracted increasing attention in recent years. Similarly, autonomy has developed into a prominent concept within health care law and ethics. This paper explores the way that ageism, understood as a set of negative attitudes about old age or older people, may impact on an older person’s ability to make maximally autonomous decisions within health care. In particular, by appealing to feminist constructions of autonomy as relational, I will argue that the key to establishing (...) this link is the concept of self-relations such as self-trust, self-worth and self-esteem. This paper aims to demonstrate how these may be impacted by the internalisation of negative attitudes associated with old age and care. In light of this, any legal or policy response must be sensitive to and flexible enough to deal with the way in which ageism impacts autonomy. (shrink)

At first glance it might appear that experimental philosophers and feminist philosophers would make good allies. Nonetheless, experimental philosophy has received criticism from feminist fronts, both for its methodology and for some of its guiding assumptions. Adding to this critical literature, I raise questions concerning the ways in which “differences” in intuitions are employed in experimental philosophy. Specifically, I distinguish between two ways in which differences in intuitions might play a role in philosophical practice, one which puts an end to (...) philosophical conversation and the other which provides impetus for beginning one. Insofar as experimental philosophers are engaged in deploying “differences” in intuitions in the former rather than the latter sense, I argue that their approach is antithetical to feminist projects. Moreover, this is even the case when experimental philosophers deploy “differences” in intuitions along lines of gender. (shrink)

Recent research on patient decision-making reveals a disconnect between theories of autonomy, agency, and decision-making and their practice in contemporary clinical encounters. This study examines these concepts in the context of female patients making oncofertility decisions in the United Kingdom in light of the phenomenon of “being guided.” Patients experience being guided as a way to cope with, understand, and defer difficult treatment decisions. Previous discussions condemn guided decision-making, but this research suggests that patients make an informed, autonomous decision to (...) be guided by doctors. Thus, bioethicists must consider the multifaceted ways that patients enact their autonomy in medical encounters. (shrink)

Attention to individual choice is a valuable dimension of public health policy; however, the creation of effective public health programmes requires policy makers to address the material and social structures that determine a person’s chance of actually achieving a good state of health. This statement summarizes a well understood and widely held view within public health practice. In this article, we (i) argue that advocates for public health can and should defend this emphasis on ‘structures’ by reference to citizen autonomy (...) and not simply by emphasizing concern for counter-balancing values such as ‘population health’ or ‘fairness’, (ii) map and critically explore the contrasting conceptions of autonomy that feature in such debates, with particular attention to conceptions of autonomy that might feature in the defence of an emphasis on structures. We draw on (i) a relational conception of autonomy and (ii) the distinction that can be made between autonomous deliberation and autonomous action to suggest that offering people the opportunity to make choices about their health without also supporting their capability to achieve the object of these choices falls short of what is often considered to be morally and politically important about promoting autonomy in relation to health. (shrink)

This article seeks to explore and analyze the relationship between autonomy and trust, and to show how these findings could be relevant to medical ethics. First, I will argue that the way in which so-called “relational autonomy theories” tie the notions of autonomy and trust together is not entirely satisfying Then, I will introduce the so-called Encapsulated Interest Account as developed by Russell Hardin. This will bring out the importance of the reasons for trust. What good reasons do we have (...) for trusting someone? I will criticize Hardin’s business model as insufficiently robust, especially in the context of health care, and then turn to another source of trust, namely, love. It may seem that trust-through-love is much better suited for the vulnerability that is often involved in health care, but I will also show that it has its own deficiencies. Good health care should therefore pay attention to both models of trust, and I will offer some tentative remarks on how to do this. (shrink)

Trust has generally been understood as an intentional mental phenomenon that one party has towards another party with respect to some object of value for the truster. In the landmark work of Annette Baier, this trust is described as a three-place predicate: A entrusts B with the care of C, such that B has discretionary powers in caring for C. In this paper we propose that, within the context of thick interpersonal relationships, trust manifests in a different way: as a (...) property of the relationship itself. We argue that this conceptualization has important implications for the debate over the ethics of interpersonal interventions. In particular, when trust is understood in this way, actions that would otherwise be deemed morally troubling may be permissible, or even morally desirable, on account of their role in strengthening trusting relationships. (shrink)

Because no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes. Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others brings them closer to the research but also brings the research closer (...) to them. When translating research into practice, engaging the public and other stakeholders is explicitly intended to make the outcomes of translation relevant to its constituency of users. In practice, engagement faces numerous challenges and is often time-consuming, expensive and ‘thorny’ work. We explore the epistemic and ontological considerations and implications of four common critiques of engagement methodologies that contest: representativeness, communication and articulation, impacts and outcome, and democracy. The ECOUTER methodology addresses problems of representation and epistemic foundationalism using a methodology that asks, “How could it be otherwise?” ECOUTER affords the possibility of engagement where spatial and temporal constraints are present, relying on saturation as a method of ‘keeping open’ the possible considerations that might emerge and including reflexive use of qualitative analytic methods. This paper describes the ECOUTER process, focusing on one worked example and detailing lessons learned from four other pilots. ECOUTER uses mind-mapping techniques to ‘open up’ engagement, iteratively and organically. ECOUTER aims to balance the breadth, accessibility and user-determination of the scope of engagement. An ECOUTER exercise comprises four stages: engagement and knowledge exchange; analysis of mindmap contributions; development of a conceptual schema ; and feedback, refinement and development of recommendations. ECOUTER refuses fixed truths but also refuses a fixed nature. Its promise lies in its flexibility, adaptability and openness. ECOUTER will be formed and re-formed by the needs and creativity of those who use it. (shrink)

Obesity is a public health problem influenced by behavioral patterns that span an ecological spectrum of individual-level factors, social network factors and environmental factors. Both individual and environmental approaches necessarily include significant influences from social networks, but how and under what conditions social networks influence behavior change is often not clearly mapped out either in the obesity literature or in many intervention designs. In this paper, we provide an analysis of recent empirical work in obesity research that explicates social network (...) influences on eating behaviors. We argue that a relational rather than individualistic view of personhood should help us better understand the content and context of social network relations that inform health behavior choices. We introduce the concept of ‘identity-constitutive affiliations’ as the glue that binds these social relationships together. Finally, we outline the implications for public health ethics in the development of effective interventions to address overweight and obesity, leveraging the content and context of social network ties to reinforce healthy (or alter unhealthy) eating. More complex treatment of positive and negative behaviors stemming from social network connections should lead to more comprehensive theoretical models of health behavior change and more effective public health interventions. (shrink)

Noninvasive prenatal screening using cell-free DNA, which analyzes placental DNA circulating in maternal blood to provide information about fetal chromosomal disorders early in pregnancy and without risk to the fetus, has been hailed as a potential “paradigm shift” in prenatal genetic screening. Commercial provision of cell-free DNA screening has contributed to a rapid expansion of the tests included in the screening panels. The tests can include screening for sex chromosome anomalies, rare subchromosomal microdeletions and aneuploidies, and most recently, the entire (...) fetal genome. The benefits of this screening tool are generally framed, by both providers and commercial laboratories, as enhancing reproductive autonomy and choice by providing an earlier, simpler, and more accurate screening while potentially reducing the need for invasive follow-up testing. The majority of the literature has explored these issues empirically or conceptually from a European or North American vantage point, one that assumes normative priorities such as individual reproductive autonomy and the clinical availability of maternal health care or prenatal screening programs within which cell-free DNA screening is offered. While its implementation has raised both challenges and opportunities, very little is known about real-world experiences and the implications of the rapid introduction of cell-free DNA screening outside of North America and Europe, especially in low- and middle-income countries. To begin addressing this gap in knowledge, we organized a four-day international workshop to explore the ethical, legal, social, economic, clinical, and practical implications of the global expansion of cell-free DNA screening. We describe eight key insights that arose from the workshop. (shrink)

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)

Choice architecture is heralded as a policy approach that does not coercively reduce freedom of choice. Still we might worry that this approach fails to respect individual choice because it subversively manipulates individuals, thus contravening their personal autonomy. In this article I address two arguments to this effect. First, I deny that choice architecture is necessarily heteronomous. I explain the reasons we have for avoiding heteronomous policy-making and offer a set of four conditions for non-heteronomy. I then provide examples of (...) nudges that meet these conditions. I argue that these policies are capable of respecting and promoting personal autonomy, and show this claim to be true across contrasting conceptions of autonomy. Second, I deny that choice architecture is disrespectful because it is epistemically paternalistic. This critique appears to loom large even against non-heteronomous nudges. However, I argue that while some of these policies may exhibit epistemically paternalistic tendencies, these tendencies do not necessarily undermine personal autonomy. Thus, if we are to find such policies objectionable, we cannot do so on the grounds of respect for autonomy. (shrink)

This article considers procedural justice in the law, with specific reference to the adjudicative context of governmental officials applying legal standards to particular cases. We critically survey the three main accounts of procedural justice in the literature: utilitarian, outcome‐based, and dignitarian. Utilitarian and outcome‐based theories share the instrumental view that the only purpose of procedures is to lead to accurate legal outcomes. However, the former are willing to trade off the benefits of accuracy against its costs, whereas the latter hold (...) that procedural rights are necessary to guard against the injustice caused when individuals' legal rights are mistakenly denied. Dignitarian theories maintain that process matters apart from outcomes, because procedures should show respect for individuals' dignity in the Kantian sense of rational agency. We present a new perspective, drawing on relational theory. Relational theory holds that we are social creatures whose self‐identities and sense of self‐respect are bound up with the quality of our relationships with other individuals, groups, and institutions. Our relational account is informed by empirical research in social psychology which has found that people's evaluation of procedures is substantially influenced by relational concerns. (shrink)

The vast majority of gamete donations worldwide are made anonymously, and in some countries, including Spain, France, and Denmark, the anonymity of donors is explicitly protected by law. Nonetheless, a growing number of countries have called into question the morality of such practices and are enacting laws allowing children access to identifying information about their gamete donor. A significant reason for the growing legislative support for nonanonymous gamete donations is the belief that donor‐conceived children have a fundamental moral right to (...) know their genetic origins and that the right should be legally protected. A variety of factors, such as the increasing number of children born by means of gamete donation, advances in genetic science and technology that make it easy to discover the identity of a person's genetic parents, and the widespread belief that genetic information is important for protecting people's health, have made this alleged right quite salient, even leading some to challenge the ethical appropriateness of gamete donation practices altogether. Often, however, this right is assumed rather than explicitly justified. The purpose of this paper is to call into question the ethical justifications that are often thought to ground a right to know one's genetic origins.Proponents of a right to know this information usually argue that such a right protects at least three vital interests: the interest of donor‐conceived people in having strong family relationships, their health interests, and their interest in forming a healthy identity. These different interests might be protected by different aspects of the right to know one's genetic origins: knowing one's mode of conception, accessing medically relevant information, and accessing identifying information about one's genetic parents. I will discuss each of these interests and explore whether and how they might be set back by an individual's lack of access to information about his or her genetic parentage. I will also evaluate whether donor anonymity policies are, as many of their opponents argue, morally impermissible because they fail to protect these important interests. (shrink)

The feminist literature against the commodification of embryos in human embryo research includes an argument to the effect that embryos are “intimately connected” to persons, or morally inalienable from them. We explore why embryos might be inalienable to persons and why feminists might find this view appealing. But, ultimately, as feminists, we reject this view because it is inconsistent with full respect for women's reproductive autonomy and with a feminist conception of persons as relational, embodied beings. Overall, feminists should avoid (...) claims about embryos’ being inalienable to persons in arguments for or against the commodification of human embryos. (shrink)

Recent work on diachronic agency has challenged the predominantly structural or synchronic approach to agency that is characteristic of much of the literature in contemporary philosophical moral psychology. However, the embodied dimensions of diachronic agency continue to be neglected in the literature. This article draws on phenomenological perspectives on embodiment and narrative conceptions of the self to argue that diachronic agency and selfhood are anchored in embodiment. In doing so, the article also responds to Diana Meyers' recent work on corporeal (...) selfhood. (shrink)

A troubling paradox of sorts may be thought to lie at the heart of the child–parent relationship. This supposed paradox consists in an apparent incompatibility of the goods afforded by that relatio...