This paper discusses the importance of informed medical consent through a case study examines the implications this case had for the medical rights of EU citizens. I start by describing a case of a Slovakian national of Roma origin against the Government of Slovakia, which appeared at the European Court of Human Rights in 2007-2012. The twenty-year old woman, who had been sterilized at a Slovakian hospital during the birth of her second child, claimed that the procedure took (...) place without her full and informed consent, and argued that the doctors’ decision was connected to the society’s long-standing negative attitude towards Roma people. After presenting the background of the case and the legal proceedings, I discuss the relevant national and European law in order to explain the positions of both sides and the rulings of the courts. I conclude by putting the case in a wider context of racial discrimination in the EU and providing a policy analysis regarding both the Slovakian and the European policies toward the Roma minority. (shrink)

Medicalization is the process by which conditions, for example, intellectual disability, hyperactivity in children, and posttraumatic stress disorder, become understood as medical disorders. During this process, the medical community often collectively assigns a label to a condition and consequently to those who would be said to have the disorder. We argue that there are at least two previously overlooked ways in which this linguistic practice may be wrongful, and sometimes, unjust: first, when the initial introduction of a (...) class='Hi'>medical label is done without the participation of those individuals who are being labelled, and second, when attempts by those individuals to renegotiate the labels are thwarted or otherwise rendered ineffective. In both cases, we argue, individuals are unfairly excluded from a linguistic practice that would be valuable for them to participate in. Furthermore, we argue that their exclusion depends in part on the authority of the medical institution to ignore their demands for participation. In making this case, we will propose the more general claim that participating in the linguistic processes of determining and renegotiating the words that will be used to describe oneself is an exercise of linguistic agency, a capacity that has both instrumental and intrinsic value. (shrink)

Much literature surrounding medical technology and adherence posits that technology is a mechanism for social control. This assumes that the medical establishment can take away patients' agency. Although power relationships and social control can play a key role, medical technology can also serve as an agentive tool to be utilized. We (1) offer the alternative framework of Actor Network Theory to view medical technology, (2) discuss the literature on medication adherence and technology, (3) delve into (...) the ramifications of looking at adherence as a network and (4) use Digital Pills as a case study of dispersed agency. (shrink)

International regulations governing medical research, healthcare and medical practice, are, obviously, meant to be guidelines and not detailed procedural rules of thumb that can be applied unreflectively without any danger of doing moral wrong. Moreover, such regulations are meant to apply internationally, and no set of straight‐jacketed rules of thumb can conceivably apply to all societies and communities of the world, extremely diverse and differently situated as they are. The mark of a good international guideline or regulation, in (...) my view, is that it should provide a clear principle of action that applies equally to all global communities and societies without seeking to foist the particular or momentary moral dilemmas, quandaries, obsessions and preoccupations of some on all.In this paper, I propose to argue that, because moral obligations are obligations only from the point of view of a particular moral agent, we should avoid making the peculiar problems of any particular moral agent the obsessive concern of all moral agents, and that we need, in particular, to make appropriate distinctions between the ethics of developed world research in the developing world, collaborative or cooperative research between the developed and developing worlds, developed world research in the developed world and developing world research in the developing world. A consequence of looking at things this way is that, while it should be clear that there are ethical concerns, imperatives and obligations at all levels, different standards may and, in fact, cannot but be applied in different contexts at different levels, without resorting to the use of double standards, which can never be morally justified. Finally, I venture to propose a formula for a solemn pledge of moral integrity and noble intent, from the perspective of the agent, that is to say, the investigator, sponsor and funder of any research, to complement and balance the widely accepted informed consent requirement, from the perspective of the patient, the subject of any biomedical research. (shrink)

International regulations governing medical research, healthcare and medical practice, are, obviously, meant to be guidelines and not detailed procedural rules of thumb that can be applied unreflectively without any danger of doing moral wrong. Moreover, such regulations are meant to apply internationally, and no set of straight‐jacketed rules of thumb can conceivably apply to all societies and communities of the world, extremely diverse and differently situated as they are. The mark of a good international guideline or regulation, in (...) my view, is that it should provide a clear principle of action that applies equally to all global communities and societies without seeking to foist the particular or momentary moral dilemmas, quandaries, obsessions and preoccupations of some on all. In this paper, I propose to argue that, because moral obligations are obligations only from the point of view of a particular moral agent, we should avoid making the peculiar problems of any particular moral agent(s) the obsessive concern of all moral agents, and that we need, in particular, to make appropriate distinctions between the ethics of developed world research in the developing world, collaborative or cooperative research between the developed and developing worlds, developed world research in the developed world and developing world research in the developing world. A consequence of looking at things this way is that, while it should be clear that there are ethical concerns, imperatives and obligations at all levels, different standards may and, in fact, cannot but be applied in different contexts at different levels, without resorting to the use of double standards, which can never be morally justified. Finally, I venture to propose a formula for a solemn pledge of moral integrity and noble intent, from the perspective of the agent, that is to say, the investigator, sponsor and funder of any research, to complement and balance the widely accepted informed consent requirement, from the perspective of the patient, the subject of any biomedical research. (shrink)

In this paper I argue that reference to a developmental account of agency can help explain, and in cases also alter, our current practices when it comes to the non-consensual medical treatment of children. It does this through its explanation of how stages of development impact the types of interests we have.

In this article, the authors attempt to build a bridge between economic theory and medical ethics to offer a new perspective to tackle ethical challenges in the physician–patient encounter. They apply elements of new institutional economics to the ethically relevant dimensions of the physician–patient relationship in a descriptive heuristic sense. The principal–agent theory can be used to analytically grasp existing action problems in the physician–patient relationship and as a basis for shaping recommendations at the institutional level. Furthermore, the patients’ (...) increased self-determination and modern opportunities for the medical laity to inform themselves lead to a less asymmetrical distribution of information between physician and patient and therefore require new interaction models. Based on the analysis presented here, the authors recommend that, apart from the physician’s necessary individual ethics, greater consideration should be given to approaches of institutional ethics and hence to incentive systems within medical ethics. (shrink)

In current American medical practice, autonomy is assumed to be more valuable than human life: if a patient autonomously refuses lifesaving treatment, the doctors are supposed to let him die. In this paper we discuss two values that might be at stake in such clinical contexts. Usually, we hear only of autonomy and best interests. However, here, autonomy is ambiguous between two concepts—concepts that are tied to different values and to different philosophical traditions. In some cases, the two values (...) (that of agency and that of authenticity) entail different outcomes. We argue that the comparative value of these values needs to be assessed. (shrink)

One of the ways in which transnational medical agencies (TMAs) such as Medicins Sans Frontieres aim to increase the access of the global poor to health services is by supplying medical aid to people who need it in developing countries. The moral imperative supporting such work is clear enough, but a variety of factors can make such work difficult. One of those factors is the wrongdoing of other agents and agencies. For as a result of such wrongdoing, the (...) attempt to supply medical aid can sometimes lead to significant negative effects. What should TMAs do in such situations? On one view, TMAs should take account of any negative effects arising from the wrongdoing of others in just the same way in which they take account of negative effects arising more directly from their own actions, or from natural forces. To many people, this view seems wrong. In this paper, I articulate and discuss several different reasons why one might think this. In doing so, I hope to contribute to a debate about the more general question of how TMAs should respond to the wrongdoing of others. (shrink)

What ethical questions does neuroscience raise and help to answer? Neuroethics blends philosophical analysis with modern brain science to address central questions within this growing field: · Is free will an illusion? · Does brain stimulation impair a patient's autonomy? · Does having a mental disorder excuse bad behavior? · Is addiction a brain disease? · Should we trust our gut feelings in ethics and politics? · Should we alter our brains to become better people? · Is human reasoning bound (...) to be biased by our values? · Can brain science be trusted to read the minds of criminals and consumers? This book provides an opinionated tour through captivating cases and a close examination of the philosophical issues and scientific evidence. Joshua May's lively and accessible writing style makes it an indispensable resource for students and scholars in both the sciences and humanities. (shrink)

BackgroundPublic involvement activities are promoted as measures for ensuring good governance in challenging fields, such as biomedical research and innovation. Proponents of public involvement activities include individual researchers as well as non-governmental and governmental organizations. However, the concept of ‘public’ in public involvement deserves more attention by researchers because it is not purely theoretical: it has important practical functions in the guidance, evaluation and translation of public involvement activities.DiscussionThis article focuses on collective agency as one property a public as (...) a small group of participants in a public involvement activity could exhibit. It introduces a prominent theoretical approach to collective agents as one specific kind of social entities and demonstrates how this approach can be applied to current practice in public involvement activities. A brief discussion of different types of representation as they are used in the existing literature on this topic is also included because representation and collective agency can be closely related to each other. Suggestions and ideas that are derived from this reasoning include the proposal to use a ‘validity check’ for the generation of collective agents as a regular element of certain types of public involvement activities, the consequences of combining collective agency and representativeness as a further property a public could exhibit, and standards for reporting the content of public involvement activities in scientific publications.SummaryThis article discusses the importance of the concept of ‘public’ in public involvement activities, with a focus on biomedical research and innovation. It introduces various practically relevant ideas that are based on a theoretical analysis of collective agency as an important property a public can possess. (shrink)

This book provides extensive and critical engagement with some of the most recent and compelling arguments favoring abortion choice. It features original essays from leading and emerging philosophers, bioethicists and medical professionals that present philosophically sophisticated and novel arguments against abortion choice. The chapters in this book are divided into three thematic sections. The first set of essays focuses primarily on unborn human individuals--zygotes, embryos and fetuses. In these chapters it is argued, for example, that human organisms begin to (...) exist at conception and that zygotes, embryos and fetuses are persons. These chapters also explore questions about whether or not zygotes, embryos and fetuses are part of their mothers' bodies. The second set of essays focuses primarily on elective abortion and the debates surrounding it. These chapters consider whether or not opponents of abortion are commonly hypocritical, how opponents of abortion should think about adoption, how emerging technologies may affect the current debate and whether or not those participating in the debate should rely on analogies to support their case. Finally, the third set of essays shifts focus from the legal and moral status of elective abortion to its place in medical practice. In these chapters it is argued that elective abortion embodies a kind of ableism, and that elective abortion is medically unnecessary, harmful to women's mental health and that telemedicine abortion poses significant risks to women's health. Agency, Pregnancy and Persons offers an up-to-date examination of unborn human beings, the debates surrounding elective abortion and the place of elective abortion within medical practice. It will be of interest to medical professionals and those who work in philosophy, bioethics and medical ethics alike. (shrink)

Living related organ transplantation is morally problematic for two reasons. First, it requires surgeons to perform nontherapeutic, even dangerous procedures on healthy donors—and in the case of children, without their consent. Second, the transplant donor and recipient are often intimately related to each other, as parent and child, or as siblings. These relationships challenge our conventional models of medical decisionmaking. Is there anything morally problematic about a parent allowing the interests of one child to be risked for the sake (...) of another? What exactly are the interests of the prospective child donor whose sibling will die without an organ? Is the choice of a parent to take risks for the sake of her child truly free, or is the specter of coercion necessarily raised? (shrink)

The COVID-19 pandemic laid bare systemic inequities shaped by social determinants of health (SDoH). Public health agencies, legislators, health systems, and community organizations took notice, and there is currently unprecedented interest in identifying and implementing programs to address SDoH. This special issue focuses on the role of medical-legal partnerships (MLPs) in addressing SDoH and racial and social inequities, as well as the need to support these efforts with evidence-based research, data, and meaningful partnerships and funding.

In this essay, I use the theological anthropology of the apostle Paul as a diagnostic lens in order to bring into focus some implicit assumptions about human personhood in the goals and methods of treatment with psychotropic medications. I argue that Paul views the body as a mode of participation in larger relational matrices in both vulnerable and vital ways. He thus sees the self as constituted relationally rather than as fundamentally isolated and self-determining. Such an understanding of personhood yields (...) an account of human agency as co-constituted and freedom as interpersonally mediated and sustained. From this perspective, the proper goal for psychiatric medication is the removal of barriers to life-giving human connections; methods of care for persons in psychological distress may include medication, but they also require embodied personal encounter. (shrink)

Bioethicists tend to focus on the individual as the relevant moral subject. Yet, in highly complex and socially differentiated healthcare systems a number of social groups, each committed to a common cause, are involved in medical decisions and sometimes even try to influence bioethical discourses according to their own agenda. We argue that the significance of these collective actors is unjustifiably neglected in bioethics. The growing influence of collective actors in the fields of biopolitics and bioethics leads us to (...) pursue the question as to how collective moral claims can be characterized and justified. We pay particular attention to elaborating the circumstances under which collective actors can claim ‘collective agency.’ Specifically, we develop four normative-practical criteria for collective agency in order to determine the conditions that must be given to reasonably speak of ‘collective autonomy’. For this purpose, we analyze patient organizations and families, which represent two quite different kinds of groups and can both be conceived as collective actors of high relevance for bioethical practice. Finally, we discuss some practical implications and explain why the existence of a shared practice of trust is of immediate normative relevance in this respect. (shrink)

Within bioethics, two prevailing approaches structure how we think about the role of medical surrogates and the decisions that they must make on behalf of incompetent patients. One approach views the surrogate primarily as the patient's agent, obediently enacting the patient's predetermined will. The second approach views the surrogate as the patient's custodian, judging for herself how to best safeguard the patient's interests. This paper argues that both of these approaches idealize away some of the ethically relevant features of (...) advance care planning that make patient preferences so inscrutable and surrogate decision-making so burdensome. It proposes a new approach to surrogate decision-making, the Fiduciary Agency Approach. On this novel approach, the surrogate has authority to not only act on the patient's behalf as the patient's agent but also to decide on the patient's behalf as the patient's fiduciary. One upshot of this new approach is that surrogates must sometimes go against the expressed dictates of the patients' advance directives not necessarily because doing so would be in the patient's best interest but rather because doing so would best represent the patients' will. (shrink)

The Direction of Medical Ethics The direction bioethics, and specifically medical ethics, will take in the next few years will be crucial. It is an emerging specialty that has attempted a great deal, that has many differing agendas, and that has its own identity crisis. Is it a subspecialty of clinical medicine? Is it a medical reform movement? Is it a consumer pro tection movement? Is it a branch of professional ethics? Is it a ra tionale for (...) legal decisions and agency regulations? Is it something physicians and ethical theorists do constructively together? Or is it a morally concentrated attack on high technology, with the prac titioners of scientific medicine and the medical ethicists in an adversarial role? Is it a conservative endeavor, exhibiting a Frankenstein syn drome in Medical Genetics ("this time, they have gone too far"), or a Clockwork Orange syndrome in Psychotherapy ("we have met hods to make you talk-walk-cry-kill")? Or does it suffer the afflic tion of overdependency on the informal fallacy of the Slippery Slope ("one step down this hill and we will never be able to stop") that remains an informal fallacy no matter how frequently it's used? Is it a restricted endeavor of analytic philosophy: what is the meaning of "disease," how is "justice" used in the allocation of medical resources, what constitutes "informed" or "consent?" Is it applied ethics, leading in clinical practice to some recommenda tion for therapeutic or preventive action? This incomplete list of questions indicates just how complex. (shrink)

‘Moral bioenhancement’ refers to the use of pharmaceuticals and other direct brain interventions to enhance ‘moral’ traits such as ‘empathy,’ and alter any ‘morally problematic’ dispositions, such as ‘aggression.’ This is believed to result in improved moral responses. In a recent paper, Tom Douglas considers whether medical interventions of this sort could be “provided as part of the criminal justice system’s response to the commission of crime, and for the purposes of facilitating rehabilitation : 101–122, 2014).” He suggests that (...) they could “at least in some cases, permissibly be provided without valid consent : 101–122, 2014)” as a form of rehabilitative punishment. He argues for this conclusion by ‘parity of reasoning,’ starting from the currently accepted practice of non-consensual incarceration. His argument appears to be dependent on the successful defence of the following two claims: that non-consensual incarceration is a morally justifiable practice, and that there is no meaningful distinction between the forcible imposition of this practice, and the forcible imposition of medical interventions on prisoners. From both claims, he deduces : if non-consensual incarceration is morally justifiable, so is the non-consensual imposition of medical correctives, in some cases. In this paper, I begin by suggesting that the basic argument behind the Parity Claim results in a reductio ad absurdum, whereby any practice that is sufficiently similar to incarceration in the ways Douglas presents, would also be considered permissible. This appears to be an unpalatable conclusion, casting doubt on the soundness of a key premise. Douglas appears to offer no means of deciding which practices are sufficiently similar to incarceration in terms of harm and threat to agency, and of the practices that I will present, which do seem to be, it does not seem that he could rule them out in any principled way. Next I turn to dispute claim relating to the purported justifiability of incarceration on rehabilitative grounds. If successful, this attack causes a break in reasoning from the justifiability of incarceration, to the justifiability of medical interventions. Medical interventions would then require an alternative, independent justification, through outlining the ways in which they are conducive to a particular aim of punishment, without relying on the justifiability of incarceration. This argument has not been provided, and I suggest that attempts to do so may run into difficulty. I untangle and make explicit the various assumptions made in Douglas’ contention that medical interventions “might be thought conducive to rehabilitation in some offenders,” locating my critique in the wider debate on the causes of crime. Finally, I seek to challenge the normative weight of the Parity Claim, arguing that to show that two practices are comparable in some sense is not sufficient to show that both are equally as permissible. Other social purposes must be considered, leading me to suggest that the forcible imposition medical correctives falls beyond the appropriate remit of the criminal justice system. (shrink)

This essay develops its idiosyncrasy by concentrating primarily on the trend of body hacking. The practitioners, self-defined as body hackers, self-made cyborgs or grinders, work in different ways to develop functional and physiological modifications through the contributions of technology. Their goal is to develop by themselves an empirically man-technique fusion. These dynamic “scientific” subcultures are producing astonishing innovations. From pocket-sized kits that sample human DNA, microchip implants that keep tabs on our internal organs, blood sugar levels or moods, and even (...) 3D printers that produce tailored hip replacements, the technical innovations of the body hacking trend are beginning to filter into mainstream use, and the repertoire increases every day. These physical transformations with intersecting techniques actively challenge long-held normative beliefs about what bodies do, what they should look like and how they should behave. They provide an alternative discourse on man’s correlation with the world and its biocenosis. Sculpting oneself has become an existential data. Medical technoscience crystallizes the effectiveness of new powers over the organism. Scientific temptation to recreate and enhance the human according to its normative principles has brought up experimental practices that have become the edge of a radical activism operating in the core of western societies, which will be the theme of this paper. (shrink)

Medical assistance in dying legislation in Canada followed much deliberation after the Supreme Court of Canada’s ruling in Carter v. Canada. Included in this deliberation was the Special Joint Committee on Physician Assisted Dying’s recommendation to extend MAID legislation beyond the inclusion of adults to mature minors. Children's agency is a construct advanced within childhood studies literature which entails eliciting children’s voices in order to recognise children as active participants in constructing their own childhoods. Using this framework, we (...) consider the possible extension of MAID legislation to most minors. We highlight important questions regarding how insights from children’s voices could be mobilised in the life or death context of MAID. We conclude that children’s voices have the potential to help determine their eligibility for MAID; however, incorporating children's voices in the context of MAID requires careful consideration due to the complexity of voice. (shrink)

The patient preference predictor is a computer-based algorithm devised to predict the medical treatment that decisionally incapacitated patients would have preferred. The target paper argues against various criticisms to the effect that the use of a PPP is inconsistent with proper respect for patient autonomy.1 In this commentary, I aim to add some clarifications to the complex relationship between autonomy and the PPP. First, I highlight one way in which the decision of a surrogate designated by the patient realises (...) respect for patient autonomy in a way that PPP cannot realise by introducing the idea of shared agency. Second, I show how the attempt to predict someone’s hypothetical choice can be disrespectful to her autonomy. Following the treatment decision of a surrogate designated by the patient counts as a way of respecting the patient’s own autonomy. Designating someone as one’s surrogate is a case of entrusting her with the task of making important life decisions on one’s behalf. To entrust someone with a certain matter is to assign her the responsibility for that matter based on the trust that she will take a good care of it. When a patient entrusts a surrogate decision-maker, what is the matter that she is trusted to take a good care of? In many contexts, the surrogate is r egarded as an epistemic proxy, one who is likely to know the patient’s preferences the best. It is often thought that the point of practising surrogate decision making is to respect the patient’s autonomy by following what the patient most likely would have preferred. Using a PPP in the decision-making process has the same goal of making a more accurate prediction of the patient’s treatment preference. However, at least in some cases, designating the patient’s intimates or ones she loves and cares …. (shrink)

ABSTRACT Medical AID organisations such as Médecins Sans Frontières receive several requests from individuals and international academic institutions to conduct research at their implementation sites in Africa. Do AID agencies have an ethical duty to comply with research requests? In this paper we respond to the views and constructed theories (albeit unfounded) of one such researcher, whose request to conduct research at one of our sites in the Democratic Republic of Congo was turned down.

One antidote to moral distress is stronger moral agency—that is, an enhanced ability to act to bring about change. The Clinical Ethics Residency for Nurses, an educational program developed and run in two large northeastern academic medical centers with funding from the Health Resources and Services Administration, intended to strengthen nurses’ moral agency. Drawing on Improving Competencies in Clinical Ethics Consultation: An Education Guide, by the American Society for Bioethics and Humanities, and on the goals of the (...) nursing profession, CERN sought to change attitudes, increase knowledge, and develop skills to act on one's knowledge. One of the key insights the faculty members brought to the design of this program is that knowledge of clinical ethics is not enough to develop moral agency. In addition to lecture‐style classes, CERN employed a variety of methods based in adult learning theory, such as active application of ethics knowledge to patient scenarios in classroom discussion, simulation, and the clinical practicum. Overwhelmingly, the feedback from the participants (sixty‐seven over three years of the program) indicated that CERN achieved transformative learning. (shrink)

Although Western biomedical ethics emphasizes respect for autonomy, the medical decision-making of Muslim patients interacting with Western healthcare systems is more likely to be motivated by relational ethical and religious commitments that reflect the ideals of equity, reciprocity, and justice. Based on an in-depth cross-cultural comparison of Islamic and Western systems of biomedical ethics and an assessment of conceptual alignments and differences, we argue that, when working with Muslim patients, an ethics of respect extends to facilitating decision-making grounded in (...) the patient’s justice-related customs, beliefs, and obligations. We offer an overview of the philosophical contestations of autonomy-enhancing practices from the Islamic tradition of biomedical ethics, and examples that demonstrate a recommended shift of emphasis from an autonomy-centered to a justice-focused approach to culturally competent agency-promotion. (shrink)

Professionalism requires that physicians uphold the best interests of patients while simultaneously insuring just use of health care resources. Current articulations of these obligations like the American Board of Internal Medicine Foundation's Physician Charter do not reconcile how these obligations fit together when they conflict. This is the problem of dual agency. The most common ways of dealing with dual agency: “bunkering”—physicians act as though societal cost issues are not their problem; “bailing”—physicians assume that they are merely agents (...) of society and deliver care typically based on a strongly consequentialist public health ethic; or “balancing”—a vaguely specified attempt to uphold both patient welfare and societal need for judicious resource use simultaneously—all fail. Here I propose how the problem of dual agency might begin to be addressed with rigor and consistency. Without dealing with the dual agency problem and getting more specific about how to reconcile its norms when they conflict, the expectations of professionalism risk being written off as cute, nonbinding aphorisms from the medical profession. (shrink)

There is an analogy between a scientific approach to medicine in which the patient ultimately becomes an object of study rather than a whole person, and a post/modern aesthetic in literature in which the subject has little or no agency in a chaotic linguistic universe. Raymond Carver died of cancer in 1988, and in both his pre- and post-diagnostic poetry there is humanistic lyricism that contributes to re-establishing empathic bonds between readers and characters, and to re-humanizing the patient as (...) a whole person in the context of contemporary health institutions. Close readings of poems with descriptions of the autopsy room and of patient-doctor relations bring out the medical humanism in Carver's verse. (shrink)

In December 2014, Physicians for Human Rights released their analysis of the summary of the Committee Report of the Central Intelligence Agency’s Detention and Interrogation Program. PHR focused on the involvement of health care professionals in the CIA torture program, concluding that the health professionals’ commissions and omissions violated the prescriptions of many fundamental bioethical documents, including international declarations of bioethics and medical research ethics. The medical doctors’ involvement evokes some thoughts concerning bioethical education. It seems that (...) instead of developing virtues through practicing morally good habits, the experience of clinical training undermines the moral ideals that medical students identified themselves with at the commencement of their medical education. The hostile response they sometimes get from their mentors when trying to question morally troubling situations may shape the habit of ‘turning a blind eye’ to unethical behaviour, since the students do not want to jeopardize their grades and future medical career. Maybe it was the development of this habit and the failure to develop the habit of moral courage instead that prevented the medical doctors participating in torture programs from defending moral ideals of their profession more effectively. (shrink)

That we treat children differently from adults is clear. The attitude of increased paternalistic standards can be seen in a number of cases – be it the rights which children have in terms of medical treatment, decisions about their lives which are left up to parents or guardians, or the prohibition of certain activities before a certain age. However, we can only treat ‘children as children’ if we can prove that this stands in great enough distinction from the adult. (...) Either it can be shown that children are significantly unique (and certainly so in relation to adults) such that different treatment on this basis is justified, or, if it cannot be shown that children are different to adults or we cannot say who is and who is not a child, then the second conclusion must be that we cannot justify children as deserving of paternalistic treatment, and must either reject paternalistic intervention altogether, or else look for a new criteria upon which to base the application of these increased paternalistic standards. The second of these conclusions is that which I will defend in this paper, and will argue that we replace the notion of childhood with that of developed agency. (shrink)

Haeusermann et al. (2023) provide a valuable ethnographic window into how RNS device users understand themselves in relation to refractory epilepsy, the medications for it, and the use of the impla...

A review of fraud in medical research in Britain, Europe, the USA and Australia. It includes a history of known cases of fraud since 1974 and discusses ways for detecting and dealing with fraud that have been devised by government agencies, pharmaceutical companies, academic institutions and scientific publications (especially medical journals).

The arguments against doctors as "double agents" that are presented by Marcia Angell in the preceding article do not defeat the core justification for rationing some relatively high-expense, low-benefit care, and they do not enable us to conclude that clinicians should be barred from any active, substantive role in decisions to limit that care. They do, however, reveal several important conditions that need to govern cost-conscious medical practice in order to preserve an ethic of fidelity to patients: insurers' profits (...) and providers' incomes must be fair, providers must inform patients of any economic reasons that lead to the forgoing of care, and "direct incentive" arrangements must not be used to contain costs. (shrink)

Women intimately interact with various medical technologies and prosthetic artifacts in the context of breast cancer. While extensive work has been done on the agency of technological artifacts and how they affect users’ perceptions and experiences, the agency of users is largely taken for granted hitherto. In this article, we explore the agency of four women who engage with breast cancer technologies and artifacts by analyzing their narrative accounts of such engagements. This empirical discussion is framed (...) within the tradition of science and technology studies, philosophy of technological mediation and phenomenology of embodied agency as ‘I can/not’. This approach leads to the conclusions that women’s technologically mediated agencies range from being restricted to extended, take place on different bodily levels, within complex temporal structures, and are determined by certain socio-cultural contexts. Furthermore, it reveals that such agency shaping does not imply a one-way conditioning relationship between technologies and users, but rather involves a reciprocal relationship in which both subject and object are co-constituted. We therefore suggest that the ‘material turn’ in philosophy of technology also needs to take into account technologically mediated, material human beings in order to gain a better understanding of human existence. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Medical Ethics in a Time of De-CommunizationRobert Baker (bio)Ethics is often treated as a matter of ethereal principles abstracted from the particulars of time and place. A natural correlate of this approach is the attempt to measure actual codes of ethics in terms of basic principles. Such an exercise can be illuminating, but it can also obscure the circumstances that make a particular codification of morality a meaningful (...) response to specific historic circumstances. This is particularly true of the codes of medical ethics beginning to emerge from the post-Communist societies of Eastern Europe, which are, perhaps, best understood as artifacts of an era, rather than as expressions of abstract principles.The era in question is post-Communist. It is an era informed by a reaction to decades of Communism, which, of course, was more than an economic system or even an ideology; it was a form of life that permeated every aspect of civil society—advertising, art, literature, music. Medicine was not exempt. I recall entering an oncology ward in East Berlin and finding the patients seated around a large table making posters. Wondering whether this was a form of art therapy, I asked the head nurse what the patients were doing. She replied: it is "Party time—the portion of each week every citizen donates to the people and the Party." I looked again at the posters and saw that they honored Karl Marx on the 100th anniversary of his death: "1883-1983, The Struggle Goes On." The Party, the struggle, the people, were everywhere, and they penetrated and informed daily life even for terminal patients on a cancer ward.The interweaving of Communist practices into the warp and woof of daily life has profound implications for the post-Communist era. It means that East Europeans cannot simply rebuild; they must unweave Communist thought patterns—what might be called the ideostructure of Communism—from the fabric of their lives through a deliberate process of deCommunization. What remains after de-Communization depends upon [End Page 363] the historical relationship each country had with Communism. In Russia, removing Communist ideostructure sets the conceptual calendar back to 1918. For the Czechs, the calendar advances to the 1930s, leaving them with thought patterns that are Western, industrial, and democratic. In the rest of Eastern Europe the conceptual clock also tends to turn back to the 1930s, but at that time the conceptual frameworks were nationalist, anti-Western, and frequently fascist, or even Nazi.In Poland the situation is different. World War II opened with the Nazi invasion of the country—which Hitler (later joined by Stalin) subsequently occupied. After the war, the Soviet army controlled the country, which became a captive player in the Soviet sphere of influence (aptly denominated, "the Warsaw Pact"). Poland's pre-Communist thought patterns are nationalist, West-leaning, accepting of parliamentary structures, but also of authoritarian government. They are also Catholic.Catholicism to Poles is not merely a religion, it is a posture of opposition to their German (Nazi, antichristian) and Russian (Orthodox or atheist) occupiers. I toured Polish hospitals several times during the Communist period —always accompanied by one or more "tour guides." (Westerners were not allowed to roam Communist countries unescorted.) Almost all of my guides wore little pins adorned with the face of Lenin (not the hammer and sickle—a symbol of Soviet occupation). Most doctors and nurses, however, adorned themselves with Catholic icons—typically a crucifix. Their conspicuously displayed crosses symbolized less their embrace of Catholicism than their rejection of Communism. Catholicism, in the Polish context, was thus an affirmation of individual and national independence.De-Communizing Polish Medical Ethics: The Abortion ControversyIn Poland, de-Communization was initiated through a series of negotiations between Lech Walensa's Solidarity and the Communist Government. The Polish Code of Medical Ethics is an indirect consequence of these negotiations, which stipulated the dissolution of Communist medical organizations. They were to be replaced by a Polish Medical Chamber—a type of quasi-governmental body, common in Eastern Europe, which combines the functions of a governmental licensing agency with those of a national medical association. Medical chambers also set standards of professional conduct and (unlike... (shrink)

Women intimately interact with various medical technologies and prosthetic artifacts in the context of breast cancer. While extensive work has been done on the agency of technological artifacts and how they affect users’ perceptions and experiences, the agency of users is largely taken for granted hitherto. In this article, we explore the agency of four women who engage with breast cancer technologies and artifacts by analyzing their narrative accounts of such engagements. This empirical discussion is framed (...) within the tradition of science and technology studies, philosophy of technological mediation and phenomenology of embodied agency as ‘I can/not’. This approach leads to the conclusions that women’s technologically mediated agencies range from being restricted to extended, take place on different bodily levels, within complex temporal structures, and are determined by certain socio-cultural contexts. Furthermore, it reveals that such agency shaping does not imply a one-way conditioning relationship between technologies and users, but rather involves a reciprocal relationship in which both subject and object are co-constituted. We therefore suggest that the ‘material turn’ in philosophy of technology also needs to take into account technologically mediated, material human beings in order to gain a better understanding of human existence. (shrink)

A large part of the explainable AI literature focuses on what explanations are in general, what algorithmic explainability is more specifically, and how to code these principles of explainability into AI systems. Much less attention has been devoted to the question of why algorithmic decisions and systems should be explainable and whether there ought to be a right to explanation and why. We therefore explore the normative landscape of the need for AI to be explainable and individuals having a right (...) to such explanation. This exploration is particularly relevant to the medical domain where the (im)possibility of explainable AI is high on both the research and practitioners’ agenda. The dominant intuition overall is that explainability has and should play a key role in the health context. Notwithstanding the strong normative intuition for having a right to explanation, intuitions can be wrong. So, we need more than an appeal to intuitions when it comes to explaining the normative significance of having a right to explanation when being subject to AI-based decision-making. The aim of the paper is therefore to provide an account of what might underlie the normative intuition. We defend the ‘symmetry thesis’ according to which there is no special normative reason to have a right to explanation when ‘machines’ in the broad sense, make decisions, recommend treatment, discover tumors, and so on. Instead, we argue that we have a right to explanation in cases that involve automated processing that significantly affect our core deliberative agency and which we do not understand, because we have a general moral right to explanation when choices are made which significantly affect us but which we do not understand. (shrink)

This issue considers the ethics of a healthcare provider intervening into a patient’s genitalia, whether by means of cutting or surgery or by ‘mere’ touching/examination. Authors argue that the permissibility of such actions in the absence of a relevant medical emergency does not primarily turn on third-party judgments of expected levels of physical harm versus benefit, or on related notions such as extensiveness or invasiveness; rather, it turns on the patient’s own consent. To bolster this argument, attention is drawn (...) to the status of the genitals as ‘intimate’ anatomy—a status that is not fully erased by being in a medical context. In this editorial, we draw on the work of Talia Mae Bettcher on ‘intimate agency’ to explore why unconsented interventions into the genitalia may constitute a distinctive sort of personal violation compared to unconsented contact with various other parts of the human body. In their feature article, Marit van der Pijl and colleagues1 argue it is unethical for healthcare providers to perform unconsented episiotomies on persons in labour. In particular, they suggest that, outside of certain rare emergencies in which, for example, the person giving birth is incapacitated1 and the procedure cannot be delayed until consent becomes possible without introducing a significant risk of serious harm (call these ‘medically necessary’2 procedures), ‘presumed consent’ is the incorrect standard to apply. Instead, they stress that, especially when a proposed intervention involves a person’s genital, sexual or reproductive organs, the need to obtain their explicit consent in advance of proceeding must be honoured. As the authors note, the broader social significance of our genitalia—widely regarded as ‘private’ anatomy—is not erased by being in a medical context (see also 2–4). Boundaries must still be observed. Ethically, this ‘leaves a very small margin for error because invasion of these body parts …. (shrink)

This paper explores the role trust plays in the context of health care partnerships where the preservation of autonomy is desired. The case of IN RE: Maria Isabel Duran is used as a focal point for discussion. I argue that within the context of collective decision making of the sort that occurs in health care relationships, trust is consistent with autonomous agency, provided the trust is relational, a property of a triadic relation between the patient and her partners in (...) health care, and between the patient and herself. Moreover, if it is the autonomy of the patient that drives the nature and the direction of her medical options, we must respect a medical ethic of informed consent and durable powers of attorney and the patient’s right of selfgovernance this ethic serves. At the foundation of trust in others and in oneself is respect. (shrink)

In 2006, a paper in the journal Archives of Pediatric and Adolescent Medicine described a novel case of growth attenuation therapy and other treatments carried out on Ashley, a severely cognitively, neurologically and physically disabled 6-year-old girl. Some of the moral arguments that have sprung up in respect of the so-called “Ashley treatment” are considered, and it is suggested that they all miss something—that the proper treatment of Ashley may have as much to do with doctors’ duties to themselves as (...) with their duties to her. It is suggested that the Ashley treatment may have been in violation of doctors’ self-regarding duties and that this possibility is worthy of further investigation. (shrink)

Through its adoption of the biomedical model of disease which promotes medical individualism and its reliance on the individual-based anthropology, mainstream bioethics has predominantly focused on respect for autonomy in the clinical setting and respect for person in the research site, emphasizing self-determination and freedom of choice. However, the emphasis on the individual has often led to moral vacuum, exaggeration of human agency, and a thin (liberal?) conception of justice. Applied to resource-poor countries and communities within developed countries, (...) autonomy-based bioethics fails to address the root causes of diseases and public health crises with which individuals or communities are confronted. A sociological explanation of disease causation is needed to broaden principles of biomedical ethics and provides a renewed understanding of disease, freedom, medical practice, patient-physician relationship, risk and benefit of research and treatment, research priorities, and health policy. (shrink)

Recent developments in genomic science hold out the tantalizing prospect of soon being able to treat and prevent a wide variety of medical conditions through gene therapy. In time, it may be possible to use similar techniques not simply to combat disease but also to enhance, or improve on, normal human functioning.

In the film Never Let Me Go, clones are forced to donate their organs anonymously. As a work of fiction, this film can be regarded as a negotiation of limited agency, since the clones are depicted as vulnerable individuals. Thereby, it evokes a confrontation with underprivileged positions in technocratic societies, encouraging the audience to take the perspective of the marginalised. The clones are situated in ‘privileged deprivation’; from the audience’s point of view, they are unable to evolve into autonomous (...) agents—but from their own perspective within the dystopian system, they are still ‘privileged’. In this paper, we analyse the depiction of the clones’ personal development. Further, we examine references to bioethical aspects as well as technologies that affect the human body both on a micro and macro level—cloning and its impact on the human embryo and organ donation practised on the full-grown human body. We argue that this film as a reference for the discussion in popular culture focuses on individuals who do not profit from modern technical progress or do not have enough agency to refuse it. To make this point, we analyse the film’s fictional story, set in a form of alternate history, as a negotiation of a historical context which brings out the idea of neglected voices. (shrink)

Recent developments in genomic science hold out the tantalizing prospect of soon being able to treat and prevent a wide variety of medical conditions through gene therapy. In time, it may be possible to use similar techniques not simply to combat disease but also to enhance, or improve on, normal human functioning.

Poovey has argued that the anesthetized “unresisting body” can offer no impediment to a doctor's interpretation of its conduct. In contrast, drawing on ethnographic data of anesthetic practice, this article suggests that the technological augmentation of the body required by present-day anesthesia enhances the ability of an unconscious body to convey its needs and shape the course of the anesthetic. In analyzing the expressions of anesthesia's cyborgs, the author draws on Haraway, Latour, and Suchman to reconsider the characteristics of (...) class='Hi'>agency and how an unconscious body might “resist” or inform a doctor's interpretation. This attempt to explore the nature and distribution of agency within a collective is intended as a contribution to the debates surrounding medical dominance and those theorizing the role of technology in health care. (shrink)

The corporatization of U.S. health care has directed cost containment efforts toward scrutinizing the clinical decisions of physicians. This stimulated a variety of new utilization management interventions, particularly in hospital and managed care settings. Recent changes in fee-for-service medicine and physicians' traditional agency relationships with patients, purchasers, and insurers are examined here. New information systems monitoring of physician ordering behavior has already begun to impact on physician autonomy and the relationship of physicians to provider organizations in both for-profit and (...) not-for-profit sectors. As managed care practice settings proliferate, serious ethical questions will be raised about agency relationships with patients.This article examines health system dynamics altering the historical agency relationship between the physician and patient and eroding the traditional autonomy of the medical profession in the United States. The corporatization of medicine and the accompanying information systems monitoring of physician productivity is seen to account of such change, now posing serious ethical dilemmas. (shrink)

Through the 1960s, many people claimed that drug advertising was educational and physicians often relied on it. Continuing Medical Education (CME) was developed to provide an alternative. However, because CME relied on grants, industry funders chose the subjects offered. Now policymakers worry that drug firms support CME to promote sales and that commercial support biases prescribing and fosters inappropriate drug use. A historical review reveals parallel problems between advertising and industry-funded CME. To preclude industry influence and improve CME, we (...) should ensure independent funding by taxing medical industries, facilities and physicians. Independent public and professional authorities should create CME curricula. An independent agency should allocate all funds to educational institutions for approved curricula. (shrink)

Recent developments in genomic science hold out the tantalizing prospect of soon being able to treat and prevent a wide variety of medical conditions through gene therapy. In time, it may be possible to use similar techniques not simply to combat disease but also to enhance, or improve on, normal human functioning.