IntroductionExtended decision -making through the use of proxy decision -makers has been enshrined in a range of International Codes, Professional Guidance and Statute,For example, the UK Mental Capacity Act section 9.1; The General Medical Council ; the US National Guardianship Association ; Nuffield Council on Bioethics ; CIOMS-WHO section 6. Court cases such as Re Quinlan in the US have also contributed to establishing the groundings for the legal status of the proxy, albeit in terms of who might be suitable (...) as a proxy in cases where there was no clear appointment of them by a still competent individual. and is now widely seen as a useful means through which we can exercise control over decisions that affect our lives when we have lost capacity to make these decisions for ourselves.I will here limit myself to discussion of proxy consent for adults appointed prior to the loss of competence by the person they are acting as proxy for. The issue of p. (shrink)

It is now being recognized across the spectrum of bioethics, and particularly in genetics and population ethics, that to focus on the individual person, and thereby neglect communities and the goods which accrue to them, is to fail to see all the ethically significant features of a range of ethical issues. This article argues that more work needs to be done in order for bioethics to respect not only goods (such as rights and interests) of communities per se, but also (...) to recognize the difference between different types of communities and their goods. The diversity of communities and the types of communal goods which accrue to them is first outlined. Following this, a basic distinction between two such types: aggregative and corporate community goods, is explained and defended, and it is then argued argue that this distinction is necessary to understand and address what and whom is ethically at stake in any situation. This is illustrated with the example of UK Biobank, the conclusion being that if current and future individual are to be respected then communal goods of both types must be recognized and respected in an effective bioethics. (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)

The principle of respect for autonomy in clinical ethics is frequently linked to bioethics’ neglect of community-level ethical considerations. I argue that the latter is not an inevitable consequence of the former; rather, that neglect results from a common interpretation of respect for autonomy in solely synchronic and individual terms. A relational understanding of autonomy reveals the way in which respect inescapably involves diachronic and social dimensions. When these are acknowledged, the association between respect for autonomy and liberal individualism is (...) weakened. Such respect has more in common with communitarian approaches, and it need not conflict with the incorporation of collective-level values into ethical deliberation. (shrink)

Felicitas Kraemer draws on the experiences of patients undergoing deep-brain stimulation to propose two distinct and potentially conflicting principles of respect: for an individual's autonomy , and for their authenticity. I argue instead that, according to commonly-invoked justifications of respect for autonomy, authenticity is itself in part constitutive of an analysis of autonomy worthy of respect; Kraemer's argument thus highlights the shortcomings of practical applications of respect for autonomy that emphasise competence while neglecting other important dimensions of autonomy such as (...) authenticity, since it shows that competence alone cannot be interpreted as a reliable indicator of an individual's capacity for exercising autonomy. I draw from relational accounts to suggest how respect for a more expansive conception of autonomy might be interpreted for individuals undergoing DBS and in general. (shrink)

Recent criticism of the role of respect for autonomy in bioethics has focused on that principle's status as ‘dogma’ or ‘ideology’. I suggest that lying beneath many applications of respect for autonomy in medical ethics are some influential dogmas — propositions accepted, not as explicit premises or as a consequence of reasoned argument, but simply because moral problems are so frequently framed in such terms. Furthermore, I will argue that rejecting these dogmas is vital to secure and protect an autonomy (...) worthy of respect. The concept of autonomy that is widely applied in clinical ethics emphasises decision-making competence, at the expense of considering the authenticity of those decisions. Respect for such autonomy is interpreted in largely synchronic and individual terms — concerned with the isolated decisions of individual agents — and thus neglects the diachronic and social dimensions of many moral dilemmas arising in the health care context. I will examine how these unwritten rules lead to an impoverished understanding of respect and a systematic neglect in bioethics of certain kinds of ethical consideration, and draw on insights from feminist and communitarian work on autonomy to sketch an alternative approach to understanding respect, modelled on the norms of respectful conversation — a respect that is firstly concerned with engaging with the another as a potential giver and bearer or reasons, and working with them to promote both individual and social flourishing. (shrink)

Emerging infectious diseases such as Ebola, Hendra, SARS, West Nile, Hepatitis E and avian influenza have led to a renewed recognition of how diseases in human beings, wildlife and livestock are interlinked. The changing prevalence and spread of such infections are largely determined by human activities and changes in environment and climate—where the latter are often also caused by human activities. Since the beginning of the 21st century, these insights have been brought together under the heading of OneHealth—a concept that (...) calls for interdisciplinary collaboration between various sciences as well as professional practices to promote and protect the health of human and non-human animals and the natural environment. Just as insights from public health have led to a broadened focus for health policy and medical care, from treating individual patients to protecting and promoting population health, OneHealth calls for an even broader perspective, including a concern for the environment and animals, and for social-cultural factors that affect human, animal and environmental health. OneHealth not only covers collaborative work to understand and control zoonotic diseases, but also other ways in which interactions between animals, plants and humans may positively or negatively impact on each other’s health. Thus, studies in veterinary medicine and environmental sciences may lead to new insights in human medicine, and vice versa. Acknowledgment of the links between environmental, animal and social health is of course not a novel insight. Hippocrates already pointed to the importance of a clean environment as a requirement for good health; the early public health movements emphasized hygienic living conditions including good-quality housing, sewage systems and clean air and water; and the founders of modern medicine such as William Osler and Rudolf Virchow promoted …. (shrink)

Whereas in the 1970s early bioethicists believed that bioethics is an arena for the application of philosophical theories of utilitarianism, deontology, and natural law thinking, contemporary policy-oriented bioethicists seem rather to be keen on framing ethical issues through political ideologies. Bioethicists today are often labeled “liberal” or “communitarian,” referring to their different understandings of the relationship between the individual and society. Liberal individualism, with its conceptual base of autonomy, dignity, and privacy, enjoyed a long period of dominance in bioethics, but (...) it has increasingly come under attack from ideologies promoting a more salient role for concepts of solidarity, community, and public interest. (shrink)

Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: “Biological materials should not, as such, give rise to financial gain”. Similarly, (...) Norwegian legislation reads: “Commercial exploitation of research participants, human biological material and personal health data in general is prohibited”. Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informants’ major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing. (shrink)

The unknown nature of tomorrow’s research makes informed consent in biobank research a challenge. Whether the consent given by biobank participants is ‘broad’ or ‘narrow’, the ever present question remains the same: are new activities covered by the original consent? In this article, we focus on the meaning of, and the relation between, broad consent and re-consent in biobank research. We argue that broad consent should be understood as consenting to a framework—a framework which covers aims, core conditions for acceptable (...) use, governance and how these affect participants. Changes that alter the framework in a fundamental way call for re-consent. Three biobank cases of current international interest are used to debate when re-consent is an ethical necessity: whole-genome sequencing, data sharing and commercial utilization. These reflections give us a more nuanced view on what consent is for. We claim that the introduction of broad consents in biobank research has not represented a betrayal of individual participant interests, as some critics have asserted. Broad consents combined with the possible use of re-consent are in certain settings not inferior, but rather ethically superior to narrow consents. In population-based research biobanks, they allow for a reconciliation between individual interest and public matters in society at large. (shrink)

In terms of output in the form of published work and attraction of resources, bioethics seems to be a more vibrant field than environmental ethics. In this commentary it is argued that bioethics is, in some respect, less humanistic than environmental ethics and that two factors––bioethics’ strong connection to a profession, and its access to an intellectual ‘killer app’––offer ways in which environmental ethicists might learn from the ‘success story’ of bioethics.

Racial inequities in medicine are the consequence of intersecting, multidimensional factors. As detailed in the articles by Braddock, Mithani, Cooper, and Boyd, and Yearby, the...

Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes. With this in mind, the Science and Values Working Group of the COST Action CHIP ME ‘Citizen's Health through (...) public-private Initiatives: Public health, Market and Ethical perspectives’ identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals’ trust in research. We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment. (shrink)

The concept of futility in medicine refers to the incapability of an intervention to achieve its goal. Futility determinations form the basis for withholding and withdrawing life-sustaining interventions. Criticisms of attempted futility definitions relate to inconstant probability and value judgements concerning the goal pursued. This variability frustrates efforts to define futility. Language modifications and procedural approaches, both important ancillary measures, inherently lack the ability to resolve this difficulty. Beneath the notion of futility lie foundational factors whose revised understanding is required (...) to advance a definition. These factors include autonomy, death and the goals of medicine. Reconsidering the essence and influence of foundational factors is necessary to move beyond a seemingly irresolvable problem. In this essay, I assert that defining futility is not pointless but rather possible, necessary and unavoidable. With this assertion, I respond to the criticisms of futility. These responses together with a corrective understanding of foundational factors lead to a definition of futility. This definition balances respect for patients’ autonomy whilst allowing for interventions that do not undermine the essence of medicine and integrity of those practising it. Defining futility is an exercise in necessity requiring renewed perceptual foundations. (shrink)

Bioethics as a distinctive field is undergoing a critical turn. It may be a quiet revolution, but a growing body of scholarship illustrates a perceived need for a rethink of the scope of the field and the approaches and priorities that have carried bioethicists through many heady years of success. Few areas of bioethical practice have been left unexamined, ranging from questions as to the sustainability of the discipline in its current form to the “expertise” of its practitioners; the legitimacy (...) of bioethics in the realms of policymaking; its relationship to philosophy; the purchase of empirical and interdisciplinary method; the relationship of bioethics to the real world; bioethical understandings of the concept of “health” ; its agenda, priorities, and inclusiveness right up to what might be the overarching question: “What is bioethics all about?” Unsurprisingly, these questions elicit varied responses. Scholars from various disciplines have critiqued fundamental tenets of the “ethics” business, albeit as claims of its “conservatism,” “corruption,” and its questionable “usefulness” suggest, not always with a charitable or constructive eye. But quite crucially and often overlooked, bioethics itself has not shied away from the question as to what bioethics is and what it should become; increasingly apparent is that this kind of self-conscious and reflexive theorizing is regarded as a key priority for taking contemporary ethics forward. (shrink)

This paper raises questions about bioethical knowledge and the bioethical ‘expert’ in the context of contestation over methods. Illustrating that from the perspective of the development of bioethics, the lack of unity over methods is highly desirable for the field in bringing together a wealth of perspectives to bear on bioethical problems, that same lack of unity also raises questions as to the expert capacity of the ‘bioethicist’ to speak to contemporary bioethics and represent the field. Focusing in particular on (...) public bioethics, the author argues that we need to rethink the concept of bioethicist, if not reject it. The concept of the bioethicist connotes a disciplinary or theoretical unity that is simply not present and from the perspective of public policy, it is incredibly misleading. Instead, bioethical expertise would be a capacity of a broader community, and not an individual. Such a conception of bioethics as an expert community rather than as an individual capacity, focuses our attention on the more functional question of what knowledge and skill set any individual possesses. (shrink)

Reinventar la bioética en una sociedad posthumanista y de posverdad. El presente y futuro de la bioética Reinventar a bioética em uma sociedade pós-humanista e pós-verdade. O presente e o futuro da bioética Bioethics is going through a rough patch in the midst of a society that seems to run away very fast from true ethical and humanistic values. Post-humanism presents a new model of the human being, one that dispenses with the principles and concepts that have been employed so (...) far by humanity. The discourse in bioethics presents this model without any relationship to the anthropology that has been used for centuries and does so in a way that is totally lacking in ethical references. These dissimilarities reflect a misrepresented academic perspective that belongs to a post-truth era. Concepts such as dignity, human nature, quality of life, respect for life and vulnerability are not well understood. When it comes to decision-making on the so-called bioethical dilemmas, it lays out a new biotechnologically improved version of man that prevails over real health and biological concerns that need to be solved. To reference this article / Para citar este artículo / Para citar este artigo Pichardo LM. Reinventing bioethics in a post-humanist and post-truth society. The present and future of bioethics. pers. bioét. 2018; 22: 212-222. DOI: 10.5294/pebi.2018.22.2.2. (shrink)

It is a common belief that obesity is wholly or partially a question of personal choice and personal responsibility. It is also widely assumed that when individuals are responsible for some unfortunate state of affairs, society bears no burden to compensate them. This article focuses on two conceptualizations of responsibility: backward-looking and forward-looking conceptualizations. When ascertaining responsibility in a backward-looking sense, one has to determine how that state of affairs came into being or where the agent stood in relation to (...) it. In contrast, a forward-looking conceptualization of responsibility puts aside questions of the past and holds a person responsible by reference to some desirable future state of affairs and will typically mean that he or she is subjected to criticism, censure, or other negative appraisals or that he or she is held cost-responsible in some form, for example, in terms of demanded compensation, loss of privileges, or similar. One example of this view is the debate as to whether the obese should be denied, wholly or partially, free and equal access to healthcare, not because they are somehow personally responsible in the backward-looking sense but simply because holding the obese responsible will have positive consequences. Taking these two conceptions of responsibility into account, the authors turn their analysis toward examining the relevant moral considerations to be taken into account when public policies regarding obesity rely on such a conception of responsibility. (shrink)

Tragic choices arise during the COVID-19 pandemic when the limited resources made available in acute medical settings cannot be accessed by all patients who need them. In these circumstances, healthcare rationing is unavoidable. It is important in any healthcare rationing process that the interests of the community are recognised, and that decision-making upholds these interests through a fair and consistent process of decision-making. Responding to recent calls to safeguard individuals’ legal rights in decision-making in intensive care, and for new authoritative (...) national guidance for decision-making, this paper seeks to clarify what consistency and fairness demand in healthcare rationing during the COVID-19 pandemic, from both a legal and ethical standpoint. The paper begins with a brief review of UK law concerning healthcare resource allocation, considering how community interests and individual rights have been marshalled in judicial deliberation about the use of limited health resources within the National Health Service. It is then argued that an important distinction needs to be drawn between procedural and outcome consistency, and that a procedurally consistent decision-making process ought to be favoured. Congruent with the position that UK courts have adopted for resource allocation decision-making in the NHS more generally, specific requirements for a procedural framework and substantive triage criteria to be applied within that framework during the COVID-19 pandemic are considered in detail. (shrink)

Debate concerning the social impact of obesity has been ongoing since at least the 1980s. Bioethicists, however, have been relatively silent. If obesity is addressed it tends to be in the context of resource allocation or clinical procedures such as bariatric surgery. However, prominent bioethicists Peter Singer and Dan Callahan have recently entered the obesity debate to argue that obesity is not simply a clinical or personal issue but an ethical issue with social and political consequences. This article critically examines (...) two problematic aspects of Singer and Callahan's respective approaches. First, there is an uncritical assumption that individuals are autonomous agents responsible for health-related effects associated with food choices. In their view, individuals are obese because they choose certain foods or refrain from physical activity. However, this view alone does not justify intervention. Both Singer and Callahan recognize that individuals are free to make foolish choices so long as they do not harm others. It is at this point that the second problematic aspect arises. To interfere legitimately in the liberty of individuals, they invoke the harm principle. I contend, however, that in making this move both Singer and Callahan rely on superficial readings of public health research to amplify the harm caused by obese individuals and ignore pertinent epidemiological research on the social determinants of obesity. I argue that the mobilization of the harm principle and corresponding focus on individual behaviours without careful consideration of the empirical research is itself a form of harm that needs to be taken seriously. (shrink)

This review essay critically examines Catherine Mills’s Biopolitics and Camisha Russell’s The Assisted Reproduction of Race. Although distinct works, the centrality of race and reproduction provides a point of connection and an opening into reframing contemporary debates within bioethics and biopolitics. In reviewing these books together I hope to show how biopolitical theory and critical philosophy of race can be useful in looking at bioethical problems from a new perspective that open up different kinds of analyses, especially around historically embedded (...) problems like institutional racism and the legacies of colonialism in healthcare. (shrink)

A google scholar search for “global bioethics” returns citations situating ethical analyses within the evolving social and physical features of the global environment. Such work is consistent with...

Health promotion involves social and environmental interventions designed to benefit and protect health. It often harmfully impacts the environment through air and water pollution, medical waste, g...

Climate change has substantial impacts on public health and safety, disease risks and the provision of health care, with the poor being particularly disadvantaged. Management of the associated health risks and changing health service requirements requires adequate responses at local levels. Health-care providers are central to these responses. While climate change raises ethical questions about its causes, impacts and social justice, medicine and bioethics typically focus on individual patients and research participants rather than these broader issues. We broaden this focus (...) by examining awareness among health-care providers in the Caribbean region, where geographic and socioeconomic features pose particular vulnerabilities to climate change. In focus groups, Caribbean providers described rises in mosquito-borne, flood-related, heat-related, respiratory and mental illnesses, and attributed these to local impacts of climate change. Their discussions showed that the significance of these impacts differs in different Caribbean nations, raising policy and social justice questions. Bioethics and public health ethics are situated to frame, inform and initiate public and policy dialog about values and scientific evidence associated with climate change. We urge readers to initiate such dialog within their own institutions about the context-dependent nature of the burdens of climate change, and values and policies that permit it to worsen. (shrink)

One manifestation of climate change is the increasingly severe extreme weather that causes injury, illness and death through heat stress, air pollution, infectious disease and other means. Leading health organisations around the world are responding to the related water and food shortages and volatility of energy and agriculture prices that threaten health and health economics. Environmental and climate ethics highlight the associated challenges to human rights and distributive justice but rarely address health or encompass bioethical methods or analyses. Public health (...) ethics and its broader umbrella, bioethics, remain relatively silent on climate change. Meanwhile global population growth creates more people who aspire to Western lifestyles and unrestrained socioeconomic growth. Fulfilling these aspirations generates more emissions; worsens climate change; and undermines virtues and values that engender appreciation of, and protections for, natural resources. Greater understanding of how virtues and values are evolving in different contexts, and the associated consequences, might nudge the individual and collective priorities that inform public policy toward embracing stewardship and responsibility for environmental resources necessary to health. Instead of neglecting climate change and related policy, public health ethics and bioethics should explore these issues; bring transparency to the tradeoffs that permit emissions to continue at current rates; and offer deeper understanding about what is at stake and what it means to live a good life in today's world. (shrink)

We applaud and support the call by Mithani et al. for “a proactive form of bioethics that actively resists and denounces i...

For over 100 years, the field of contemporary public health has existed to improve the health of communities and populations. As public health practitioners conduct their work – be it focused on preventing transmission of infectious diseases, or prevention of injury, or prevention of and cures for chronic conditions – ethical dimensions arise. Borrowing heavily from the ethical tools developed for research ethics and bioethics, the nascent field of public health ethics soon began to feel the limits of the clinical (...) model and began creating different frameworks to guide its ethical challenges. Several public health ethics frameworks have been introduced since the late 1990s, ranging from extensions of principle-based models to human rights and social justice perspectives to those based on political philosophy. None has coalesced as the framework of choice in the discipline of public health. This paper examines several of the most-known frameworks of public health ethics for their common theoretical underpinnings and values, and suggests next steps toward the formulation of a single framework. (shrink)

Public health ethics is a nascent field, emerging over the past decade as an applied field merging concepts of clinical and research ethics. Because the “patient” in public health is the population rather than the individual, existing principles might be weighted differently, or there might be different ethical principles to consider. This paper reviewed the evolution of public health ethics, the use of bioethics as its model, and the proposed frameworks for public health ethics through 2010. Review of 13 major (...) public health ethics frameworks published over the past 15 years yields a wide variety of theoretical approaches, some similar foundational values, and a few similar operating principles. Coming to a consensus on the reach, purpose, and ends of public health is necessary if we are to agree on what ethical underpinnings drive us, what foundational values bring us to these underpinnings, and what operating principles practitioners must implement to make ethical decisions. If public health is distinct enough from clinical medicine to warrant its own set of ethical and philosophical underpinnings, then a decision must be made as to whether a single approach is warranted or we can tolerate a variety of equal but different perspectives. (shrink)

Contemporary biomedical ethics and environmental ethics share a common ancestry in Aldo Leopold's and Van Rensselaer Potter's initial broad visions of a connected biosphere. Over the past five decades, the two fields have become strangers. Public health ethics, a new subfield of bioethics, emerged from the belly of contemporary biomedical ethics and has evolved over the past 25 years. It has moved from its traditional concern with the tension between individual autonomy and community health to a wider focus on social (...) justice and solidarity. Public health has a broad focus that includes individual, community, and environmental health. Public health ethics attends to these broad commitments reflected in the increasing concern with the connectedness of health of individuals to the health of populations, to the health of animals, to the health of the environment; it is well situated to reconnect all three “fields” of ethics to promote a healthier planet. (shrink)

Philosophical arguments stemming from the public health ethics arena suggest that public health interventions ought to be subject to normative inquiry that considers relational values, including concepts such as solidarity, reciprocity and health equity. As yet, however, the extent to which ‘public’ values influence the ‘autonomous’ decisions of the public remains largely unexplored. Drawing on interviews with 50 men in Vancouver, Canada, this study employs a critical discourse analysis to examine participants’ decisions and motivations to voluntarily access HIV testing and/or (...) to accept a routine HIV test offer. Within a sub-set of interviews, a transactional discourse emerged in which the decision to test features an arrangement of ‘giving and receiving’. Discourses related to notions of solidarity emphasize considerations of justice and positions testing as a ‘public’ act. Lastly, ‘individualistic’ discourses focused on individual-level considerations, with less concern for the broader public ‘good’. These findings underscore how normative dimensions pertaining to men’s decisions to test are dialectically interrelated with the broader social and structural influences on individual and collective health-related behaviour, thereby suggesting a need to advance an explicit empirical-normative research agenda related to population and public health intervention research. (shrink)

Patient or public involvement in health research is increasingly expected as a matter of policy. In theory, PPI can contribute both to the epistemic aims intrinsic to research, and to extrinsically valued features of research such as social inclusion and transparency. In practice, the aims of PPI have not always been clear, although there has been a tendency to encourage the involvement of so-called ordinary people who are regarded as representative of an assumed patient perspective. In this paper we focus (...) on the epistemic potential of PPI, using theoretical work in epistemology to develop a nuanced account of patients’ experiential knowledge and how this might contribute directly to conceptual development, hypothesis generation and data interpretation. We also consider how some features of health research pose barriers to this kind of epistemic contribution. Drawing on Miranda Fricker’s idea of testimonial injustice, we explore how disciplinary indicators of credibility in clinical and academic health research contexts might be wrongly applied to those involved in PPI, undermining their potential to contribute. Finally we argue for a range of strategies to maximize opportunities for patients to engage with research teams and make epistemologically significant contributions to research. (shrink)

Quelles sont les principales problématiques en émergence dans l’éthique de la santé publique ces 10 prochaines années? Se hasarder à prédire l’avenir nécessite toujours une certaine dose d’autodérision, mais les fondements des enjeux sur une échéance aussi proche sont en grande partie déjà présents. Ils peuvent être décrits à différents niveaux d’observation. Le premier de ces niveaux est technique : la santé publique recouvre toute une série d’interventions, dont la mise en œuvre rencontre des obstacles qui, pour certains, ont une (...) résonance éthique. Le deuxième niveau est philosophique et politique : la dimension collective des interventions de santé publique mobilise les débats généraux concernant la liberté individuelle d’une part, et la justice distributive d’autre part. Le troisième niveau est systémique : la santé de la population peut en effet être considérée comme une ressource faisant l’objet de tensions politiques dont la visibilité est pour le moment variable. Certes, l’idée que la santé du peuple est une richesse pour la nation remonte au Siècle des lumières (1). Néanmoins, prise dans les débat centrés sur l’individu et la collectivité, l’éthique de la santé publique peine davantage à concevoir parmi ses objets les tensions à l’œuvre entre différentes collectivités, certaines seulement comptant parmi leurs tâches la protection des biens communs dont fait partie la santé publique. (shrink)

If funding allocation is an indicator of a field’s priorities, then the priorities of the field of bioethics are misaligned because they perpetuate injustice. Social justice mandates priority for the factors that drive systematic disadvantage, which tend not to be the areas supported by funding within academic bioethics. Current funding priorities violate social justice by overemphasizing technologies that aim to enhance the human condition without addressing underlying structural inequalities grounded in racism, and by deemphasizing areas of inquiry most frequently pursued (...) by Scholars of Color. This lack of attention to upstream determinants of health in bioethics research perpetuates a gap in the resources needed to understand the experiences of communities disproportionately experiencing poor health, which is itself a form of epistemic injustice. Both social and epistemic injustices are apparent in the impact of these funding priorities on people of color, both in the public and in the bioethics community. (shrink)

Reproductive genetic carrier screening is increasingly being offered more widely, including to people with no family history or otherwise elevated chance of having a baby with a genetic condition. There are valid reasons to reject a prevention-focused public health ethics approach to such screening programs. Rejecting the prevention paradigm in this context has led to an emphasis on more individually-focused values of freedom of choice and fostering reproductive autonomy in RCS. We argue, however, that population-wide RCS has sufficient features in (...) common with other public health screening programs that it becomes important also to attend to its public health implications. Not doing so constitutes a failure to address the social conditions that significantly affect people’s capacity to exercise their reproductive autonomy. We discuss how a public health ethics approach to RCS is broader in focus than prevention. We also show that additional values inherent to ethical public health—such as equity and solidarity—are essential to underpin and inform the aims and implementation of reproductive carrier screening programs. (shrink)

In the United Kingdom, the question of how much information is required to be given to patients about the benefits and risks of proposed treatment remains extant. Issues about whether healthcare resources can accommodate extended shared decision-making processes are yet to be resolved. COVID-19 has now stepped into this arena of uncertainty, adding more complexity. U.K. public health responses to the pandemic raise important questions about professional standards regarding how the obtaining and recording of consent might change or be maintained (...) in such emergency conditions, particularly in settings where equipment, medicines, and appropriately trained or specialized staff are in short supply. Such conditions have important implications for the professional capacity and knowledge available to discuss the risks and benefits of and alternatives to proposed treatment with patients. The government’s drive to expedite the recruitment to wards of medical students nearing the end of their studies, as well as inviting retired practitioners back into practice, raises questions about the ability of such healthcare providers to engage fully in shared decision-making.This article explores whether the legal duty on healthcare practitioners to disclose the material risks of a proposed medical treatment to a patient should be upheld during pandemic conditions or whether the pre-eminence of patient autonomy should be partly sacrificed in such exceptional circumstances. We argue that measures to protect public health and to respect autonomous decision-making are not mutually exclusive and that there are good reasons to maintain professional standards in obtaining consent to treatment even during acute pressures on public health systems. (shrink)

This article critically examines current responses to multi-drug resistant tuberculosis and argues that bioethics needs to be willing to engage in a more radical critique of the problem than is currently offered. In particular, we need to focus not simply on market-driven models of innovation and anti-microbial solutions to emergent and re-emergent infections such as TB. The global community also needs to address poverty and the structural factors that entrench inequalities—thus moving beyond the orthodox medical/public health frame of reference.

In this paper I provide a critique of a set of assumptions relating to agency, choice and the legitimacy of actions impacting health that can be seen in some approaches to health promotion. After a brief discussion about the definition of health promotion, I outline two contrasting approaches to this area of health care practice. The first is focused on the provision of information and the second is concerned with seeking to change people’s preferences in a particular way. It has (...) been argued by a number of critics of health promotion that only the first approach is ethical, as it is for individuals to make their own lifestyle choices and adopt their own conception of the good life. I argue against this ‘information’ approach to health promotion on two grounds. First, I suggest that given the aims of health promotion, the provision of information is, as a matter of fact, of limited effectiveness in achieving these aims. Second, I argue that we have good reasons to question the appropriateness of respecting many of the preferences that individuals happen to have, given the origins and quality of such preferences. I then go on to argue, that by contrast we have good reasons to focus on changing at least some of the preferences that people have related to their lifestyle choices. This involves a commitment to both paternalism and a defence of a certain conception of the good life, but both can be defended. I use the example of potential responses to the growing problem of obesity to illustrate my argument, arguing that only policy that, at least sometimes, aims at preference change will be both effective and ethical. (shrink)

Healthcare practitioners have access to a range of ethical guidance. However, the normative role of this guidance in ethical decision-making is underexplored. This paper considers two ways that healthcare practitioners could approach ethics guidance. We first outline the idea of deference to ethics guidance, showing how an attitude of deference raises three key problems: moral value; moral understanding; and moral error. Drawing on philosophical literature, we then advocate an alternative framing of ethics guidance as a form of moral testimony by (...) colleagues and suggest that a more promising attitude to ethics guidance is to approach it in the spirit of ‘critical engagement’ rather than deference. (shrink)

How should we respond to patients who do not wish to take on the responsibility and burdens of making decisions about their own care? In this paper, we argue that existing models of decision-making in modern healthcare are ill-equipped to cope with such patients and should be supplemented by an “appointed fiduciary” model where decision-making authority is formally transferred to a medical professional. Healthcare decisions are often complex and for patients can come at time of vulnerability. While this does not (...) undermine their capacity, it can be excessively burdensome. Most existing models of decision-making mandate that patients with capacity must retain ultimate responsibility for decisions. An appointed fiduciary model provides a formalized mechanism through which those few patients who wish to defer responsibility can hand over decision-making authority. By providing a formal structure for deferring to an appointed fiduciary, the confusions and risks of the informal transfers that can occur in practice are avoided. Finally, we note how appropriate governance and law can provide safeguards against risks to the welfare of patients and medical professionals. -/- . (shrink)