Is being responsible good enough? Stone (1975) argued that we need corporate moral responsibility because neither law nor market is adequate to forestall harmful effects of business activities. However, it is not possible for businesses to become responsible for all forms of foreseeable, preventable harm that they produce. This is illustrated here by cases from insurance, television programming, automobiles and weapons production. Reflection on these examples leads to the formulation of a new conception of unintended harms as moral externalities of (...) business activities. Although one might argue that these (negative) moral external effects are outweighed by the desirable end products of business activities, three reasons not to accept the results of such a moral subtraction(or double effect) argument are presented. Instead, the article concludes by offering four techniques for a qualitative, ethical analysis of produced artefacts and their consequences; intended not to displace but to supplement the study of moral responsibility in business. (shrink)

The aim of this study was to explore the relational aspects of the consent process for HPV vaccination as experienced by school nurses, based on the assumption that individuals have interests related to persons close to them, which is not necessarily to be apprehended as a restriction of autonomy; rather as a voluntary and emotionally preferred involvement of their close ones. Thirty Swedish school nurses were interviewed in five focus groups, before the school based vaccination program had started in Sweden. (...) The empirical results were discussed in light of theories on relational autonomy. The school nurses were convinced that parental consent was needed for HPV vaccination of 11-year-old girls, but problems identified were the difficulty to judge when a young person is to be regarded as autonomous and what to do when children and parents do not agree on the decision. A solution suggested was that obtaining informed consent in school nursing is to be seen as a deliberative process, including the child, the parents and the nurse. The nurses described how they were willing strive for a dialogue with the parents and negotiate with them in the consent process. Seeing autonomy as relational might allow for a more dialogical approach towards how consent is obtained in school based vaccination programs. Through such an approach, conflicts of interests can be made visible and become possible to deal with in a negotiating dialogue. If the school nurses do not focus exclusively on accepting the individual parent’s choice, but strive to engage in a process of communication and deliberation, the autonomy of the child might increase and power inequalities might be reduced. (shrink)

Full-Blooded religion is not acceptable in mainstream bioethics. This article excavates the cultural history that led to the suppression of religion in bioethics. Bioethicists typically fall into one of the following camps. 1) The irreligious, who advocate for suppressing religion, as do Timothy F. Murphy, Sam Harris, and Richard Dawkins. This irreligious camp assumes American Fundamentalist Protestantism is the real substance of all religions. 2) Religious bioethicists, who defend religion by emphasizing its functions and diminishing its metaphysical commitments. Religious defenders (...) empty religion of its theology to present its feel-good functions in a way that is acceptable to the irreligious. However, religion reduced to its functions dissolves into a counter-culture that may counteract materialism but lacks the power to motivate much more. This article criticizes both camps, as both presume Enlightenment myths and consequently neuter religion. Both irreligious and religious bioethicists commonly presume Enlightenment myths about secularity and religion. Secularity is presumed neutral and rational. Religion is presumed divisive and irrational. This myth provides built-in value-judgements; we have already judged secularity as good and religion as bad. Much of the debate over religion in bioethics is arguing over false stereotypes of religion. Consequently, mainstream bioethics neuters religion, while the irreligious are gifted political power to define the field. (shrink)

This paper considers the hotly debated issue of whether one should grant moral and legal personhood to intelligent robots once they have achieved a certain standard of sophistication based on such criteria as rationality, autonomy, and social relations. The starting point for the analysis is the European Parliament’s resolution on Civil Law Rules on Robotics and its recommendation that robots be granted legal status and electronic personhood. The resolution is discussed against the background of the so-called Robotics Open Letter, which (...) is critical of the Civil Law Rules on Robotics. The paper reviews issues related to the moral and legal status of intelligent robots and the notion of legal personhood, including an analysis of the relation between moral and legal personhood in general and with respect to robots in particular. It examines two analogies, to corporations and animals, that have been proposed to elucidate the moral and legal status of robots. The paper concludes that one should not ascribe moral and legal personhood to currently existing robots, given their technological limitations, but that one should do so once they have achieved a certain level at which they would become comparable to human beings. (shrink)

This article explores the ethical implications of the goal of functional independence for persons with disabilities. Central to independence is protection against the fear and uncertainty of future dependency and assurance of a level of social status. Moreover, independence reflects individualism, autonomy and control of decisions about one's life. Dependency, in contrast, implies the inability to do things for oneself and reliance on others to assist with tasks of everyday life. The ethics of independence are explored within the context of (...) the medical and social constructionist models of disability and contrasted against the ethics of support that underscores self-regulated dependency. Self-regulated dependency gives emphasis to the need for support created through relationships, choices and the management of resources. Finally, the article concludes with a challenge to meaningfully translate the principles of ethics to the multiplicity of adapted physical activity contexts. (shrink)

Background Ethics committees typically apply the common principles of autonomy, nonmaleficence, beneficence and justice to research proposals but with variable weighting and interpretation. This paper reports a comparison of ethical requirements in an international cross-cultural study and discusses their implications. Discussion The study was run concurrently in New Zealand, UK, Israel, Canada and USA and involved testing hypotheses about believability of testimonies regarding alleged child sexual abuse. Ethics committee requirements to conduct this study ranged from nil in Israel to considerable (...) amendments designed to minimise participant harm in New Zealand. Assessment of minimal risk is a complex and unreliable estimation further compounded by insufficient information on probabilities of particular individuals suffering harm. Estimating potential benefits/ risks ratio and protecting participants' autonomy similarly are not straightforward exercises. Summary Safeguarding moral/humane principles should be balanced with promotion of ethical research which does not impede research posing minimal risk to participants. In ensuring that ethical standards are met and research has scientific merit, ethics committees have obligations to participants (to meet their rights and protect them from harm); to society (to ensure good quality research is conducted); and to researchers (to treat their proposals with just consideration and respect). To facilitate meeting all these obligations, the preferable focus should be promotion of ethical research, rather than the prevention of unethical research, which inevitably results in the impediment of researchers from doing their work. How the ethical principles should be applied and balanced requires further consideration. (shrink)

In principle, all patients deserve to receive optimal medical treatment equally. However, in situations in which there is scarcity of time or resources, medical treatment must be prioritized based on a triage. The conventional guidelines of medical triage mandate that treatment should be provided based solely on medical necessity regardless of any non-medical value-oriented considerations (“worst-first”). This study empirically examined the influence of value-oriented considerations on medical triage decision–making. Participants were asked to prioritize medical treatment relating to four case scenarios (...) of an emergency situation resulting from a car collision. The cases differ by situational characteristics pertaining to the at-fault driver, which were related to culpability attribution. In three case scenarios most participants gave priority to the most severely injured individual, unless the less severely injured individual was their brother. Nevertheless, in the aftermath of a vehicle-ramming terror attack most participants prioritized the less severely injured individual (“victim-first”). Our findings indicate that when caregivers are presented with concrete highly conflictual triage situations their choices may be based on value-oriented considerations related to contextual characteristics of the emergency situation. Philosophical and practical ramifications of our findings are discussed. (shrink)

Assessment in ethics education faces a challenge. From the perspectives of teachers, students, and third-party evaluators like the Accreditation Board for Engineering and Technology and the National Institutes of Health, assessment of student performance is essential. Because of the complexity of ethical case analysis, however, it is difficult to formulate assessment criteria, and to recognize when students fulfill them. Improvement in students’ moral reasoning skills can serve as the focus of assessment. In previous work, Rosa Lynn Pinkus and Claire Gloeckner (...) developed a novel instrument for assessing moral reasoning skills in bioengineering ethics. In this paper, we compare that approach to existing assessment techniques, and evaluate its validity and reliability. We find that it is sensitive to knowledge gain and that independent coders agree on how to apply it. (shrink)

During the past few months, the discussion over the physicians' “Right of Conscience” has been on the rise. The intervention of politics in this issue shifts the discussion to a very specific and narrow area, namely the “reproductive health laws” which bear well-known predisposing attitudes.In this article, the physician's ROC is discussed in the context in which it naturally belongs: the Patient Physician Relationship . I suggest that the physicians' rights demand is a comprehensible, predictable, and even inevitable step as (...) part of the “evolution” of the PPR. Thus, the most appropriate way to comprehend and tackle the demand for physicians' ROC is within the context of medical professionalism. While searching for practical solutions to the “reproductive health” problems, there is a need to recognize the ethical and practical implications of the change in the PPR and balance between patient and physician rights. (shrink)

Recently, the discussion regarding the physicians’ “Right of Conscience” has been on the rise. This issue is often confined to the “reproductive health” arena within the political context. The recent dispute of the Bush-Obama administrations regarding the legal protections of health workers who refuse to provide care that violates their personal beliefs is an example of the political aspects of this dispute. The involvement of the political system automatically shifts the discussion regarding physicians’ ROC into the narrow area of “reproductive (...) health laws.” Indeed, the immediate association that comes to mind when thinking about the practical implications of this dispute is related to the reproductive health arena. This is partly because of the historical context of the first “conscience clauses,” initially enacted by Congress and state legislatures in the mid-1970s; in fact, most of these clauses provided specific exemptions for abortion and few exempted sterilization as well. (shrink)

During this early stage of HIT adoption, it is critical that we engage in discussions regarding informed consent's proper role in a health care environment in which electronic information sharing holds primary importance. This article discusses current implementation of the doctrine within health information exchange networks; the relationship between informed consent and privacy; the variety of ways that the concept is referenced in discussions of information sharing; and challenges that surround incorporation of the doctrine into the evolving HIT environment. The (...) article concludes by reviewing the purpose behind the traditional obligation to obtain informed consent and the possibility of maintaining its relevance in the new environment. (shrink)

As policy makers place great hope in health information technology as a means to lower costs and achieve improvements in health care quality, safety, and efficiency, organizations at the forefront of building health information exchange networks attempt to weave the concept and function of informed consent into an evolving information-driven health care system. The vast amount of information that will become available to both health professionals and patients in the new HIT-driven environment can reasonably be expected to affect the relationship (...) between them in many ways, particularly in the area of informed consent. During this early stage of HIT adoption, it is critical that we engage in discussions regarding informed consent’s proper role in a heretofore unknown health care environment — one in which electronic information sharing holds primary importance. The central and largely unexamined question of whether and how the legal and ethical underpinnings of informed consent will fit into the context of HITenabled treatment is critical to both public policy and clinical practice. (shrink)

BackgroundRespect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be adequately (...) operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics.MethodsUsing PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced.ResultsFifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations.ConclusionsThree main conclusions were reached. First, literature on relational autonomy tends to be more a ‘reaction against’ an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations. (shrink)

The author examines the motives for the behaviour and actions of Dr. Skreta, the main character of Kundera’s novel The Farewell Waltz. The starting point of the novel was the social and political situation in totalitarian Czechoslovakia at the turn of the 1960s and 1970s. He compares it to the situation in the developed western world and comes to a realization that there were many similarities in medicine; however, there were significant differences with regard to external factors. The health care (...) system in western democratic societies were placed in contrast with Czechoslovakia, where a doctor’s activities and the system of health care were subordinated to the political, ideological, and social intentions of totalitarian power. In this context, the author has come to the conclusion that Dr. Skreta’s motives for acting arose from his moral responsibility for the country’s future. Dr. Skreta waged a latent personal “moral war” against the totalitarian regime. This was also reflected in his opposition to the preferred morality of socialist health care professionals. Part of this was his eugenics project. According to the author, in the context of ethics of social consequences, Dr. Skreta was a responsible moral agent seeking a better future not only for the country and its people, but his personal selfish interests. (shrink)

This article examines the difficulties encountered in teaching professionalism to medical students in the current social and political climate where economic considerations take top priority in health care decision making. The conflict between the commitment to advocate at all times the interests of one’s patients over one’s own interests is discussed. With personal, institutional, tech industry, pharmaceutical industry, and third-party payer financial imperatives that stand between patients and the delivery of health care, this article investigates how medical ethics instructors are (...) to teach professionalism in a responsible way that does not avoid dealing with the principle of justice. (shrink)

Many parents are hesitant about, or face motivational barriers to, vaccinating their children. In this paper, we propose a type of vaccination policy that could be implemented either in addition to coercive vaccination or as an alternative to it in order to increase paediatric vaccination uptake in a non-coercive way. We propose the use of vaccination nudges that exploit the very same decision biases that often undermine vaccination uptake. In particular, we propose a policy under which children would be vaccinated (...) at school or day-care by default, without requiring parental authorization, but with parents retaining the right to opt their children out of vaccination. We show that such a policy is likely to be effective, at least in cases in which non-vaccination is due to practical obstacles, rather than to strong beliefs about vaccines, ethically acceptable and less controversial than some alternatives because it is not coercive and affects individual autonomy only in a morally unproblematic way, and likely to receive support from the UK public, on the basis of original empirical research we have conducted on the lay public. (shrink)

Conflict of interests in medicine are typically taken to be financial in nature: it is often assumed that a COI occurs when a healthcare practitioner’s financial interest conflicts with patients’ interests, public health interests, or professional obligations more generally. Even when non-financial COIs are acknowledged, ethical concerns are almost exclusively reserved for financial COIs. However, the notion of “interests” cannot be reduced to its financial component. Individuals in general, and medical professionals in particular, have different types of interests, many of (...) which are non-financial in nature but can still conflict with professional obligations. The debate about healthcare delivery has largely overlooked this broader notion of interests. Here, we will focus on health practitioners’ moral or religious values as particular types of personal interests involved in healthcare delivery that can generate COIs and on conscientious objection in healthcare as the expression of a particular type of COI. We argue that, in the healthcare context, the COIs generated by interests of conscience can be as ethically problematic, and therefore should be treated in the same way, as financial COIs. (shrink)

Recruitment processes for clinical trials are governed by guidelines and regulatory systems intended to ensure participation is informed and voluntary. Although the guidelines and systems provide some protection to potential participants, current recruitment processes often result in limited understanding and experiences of inadequate decision support. Many trials also have high drop-out rates among participants, which are ethically troubling because they can be indicative of poor experiences and they limit the usefulness of the knowledge the trials were designed to generate. Drawing (...) on recent social-psychological and philosophical-ethical research on trial recruitment and patient participation in treatment decision-making, this paper identifies possibilities for improving communicative support for both initial decisions and ongoing participation in clinical trials. It highlights the potential of a shift in thinking about ‘voluntariness’, underpinned by relational understandings of autonomy, to encourage more nuanced judgements about the ethics of communication between trial staff and (potential) participants. The paper suggests that the idea of responsively enabling people to consider invitations or requests to participate in particular trials could serve as a general guide to communication. This might help ensure decisions about trial participation are meaningfully informed and voluntary, and that relationships between trial staff and participants contribute to positive experiences of trial participation and ultimately to the generation of the robust knowledge. (shrink)

When making moral judgments, people are typically guided by a plurality of moral rules. These rules owe their existence to human emotions but are not simply equivalent to those emotions. And people’s moral judgments ought to be guided by a plurality of emotion-based rules. The view just stated combines three positions on moral judgment: [1] moral sentimentalism, which holds that sentiments play an essential role in moral judgment,1 [2] descriptive moral pluralism, which holds that commonsense moral judgment is guided by (...) a plurality of moral rules2, and [3] prescriptive moral pluralism, which holds that moral judgment ought to be guided by a plurality of moral rules. In what follows, we will argue for all three positions. We will not present a comprehensive case for these positions nor address many of the arguments philosophers have developed against them. What we will try to show is that recent psychological work supports sentimentalist pluralism in both its descriptive and prescriptive forms. (shrink)

The idea that deep brain stimulation (DBS) induces changes to personality, identity, agency, authenticity, autonomy and self (PIAAAS) is so deeply entrenched within neuroethics discourses that it has become an unchallenged narrative. In this article, we critically assess evidence about putative effects of DBS on PIAAAS. We conducted a literature review of more than 1535 articles to investigate the prevalence of scientific evidence regarding these potential DBS-induced changes. While we observed an increase in the number of publications in theoretical neuroethics (...) that mention putative DBS-induced changes to patients’ postoperative PIAAAS, we found a critical lack of primary empirical studies corroborating these claims. Our findings strongly suggest that the theoretical neuroethics debate on putative effects of DBS relies on very limited empirical evidence and is, instead, reliant on unsubstantiated speculative assumptions probablyin lieuof robust evidence. As such, this may reflect the likelihood of a speculative neuroethics bubble that may need to be deflated. Nevertheless, despite the low number of first-hand primary studies and large number of marginal and single case reports, potential postoperative DBS changes experienced by patients remain a critical ethical concern. We recommend further empirical research in order to enhance theoretical neuroethics work in the area. In particular, we call for the development of better instruments capable of capturing potential postoperative variations of PIAAAS. (shrink)

BackgroundFor children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasis to adopt this approach, little is known about the roles and responsibilities taken by parents and paediatricians in this process. In this study, we describe how paediatricians approach decision-making for a child with a (...) life-limiting condition who is unable to participate in decision-making for his/herself.MethodsThis qualitative phenomenological study involved 25 purposively sampled paediatricians. Verbatim transcripts from individual semi-structured interviews, conducted between mid-2019 and mid-2020, underwent thematic analysis. Interviews were based around a case vignette matched to the clinical experience of each paediatrician.ResultsTwo key themes were identified in the exploration of paediatricians' approach to decision-making for children with life-limiting conditions: there is a spectrum of paediatricians’ roles and responsibilities in decision-making, and the specific influences on paediatricians’ choice of approach for end-of-life decisions. In relation to, analysis showed four distinct approaches: non-directed, joint, interpretative, and directed. In relation to, the common factors were: harm to the child, possible psychological harm to parents, parental preferences in decision-making, and resource allocation.ConclusionsDespite self-reporting shared decision-making practices, what paediatricians often described were physician-led decision-making approaches. Adopting these approaches was predominantly justified by paediatricians’ considerations of harm to the child and parents. Further research is needed to elucidate the issues identified in this study, particularly the communication within and parental responses to physician-led approaches. We also need to further study how parental needs are identified in family-led decision-making approaches. These nuances and complexities are needed for future practice guidance and training around paediatric decision-making.Trial registration: Not applicable. (shrink)

Cara sui (care of the self) is a guiding thread in Foucault's later writings on ethics. Following Foucault in that inquiry, we are urged beyond our fairly superficial conceptions of consequences, harms, benefits, and the rights of persons, and led to examine ourselves and try to articulate the sense of life that animates ethical reasoning. The result is a nuanced understanding with links to virtue ethics and post-modern approaches to ethics and subjectivity. The approach I have articulated draws on the (...) phenomenology of Levinas and Heidegger, the Virtue ethics of Baier, and the post-structuralist writing of Michel Foucault. The subject is seen as negotiable, embodied, provisional and able to be transformed in a way that denies essentialism about human beings, their moral status, and the idea of the good. The human being emerges as responsible because, properly, responsive to the context of discourse in which morality becomes articulated. When we import this style of thinking into bioethics we find that it reaches beyond issues of policy or right conduct and allows us to use the biomedical sciences and the clinical world to revise and interrogate our understanding of ourselves and the theoretical foundations of health care ethics. (shrink)

The case method approach to introducing ethical issues is a traditional tool for applying critical thinking skills to a specific dilemma (Beauchamp & Childress, 2001). It allows for personal reflection and clarification of an individual's conceptual framework for deciding what is and is not ethical behavior. However, it also affords the student distance from the story line and may, through providing a retrospective critique, prevent sufficient challenge to the student to articulate and defend personal value assessments in addressing the ethical (...) dynamics reflected in the case. Providing teaching exercises that encourage the creation of language to form that conceptual framework and a comfort in using that language allows the student to not only identify ethical issues but also recognize and more effectively communicate the struggles with molding a personal values portrait to apply to such cases. (shrink)

Individuals with body integrity identity disorder seek to address a non-delusional incongruity between their body image and their physical embodiment, sometimes via the surgical amputation of healthy body parts. Opponents to the provision of therapeutic healthy-limb amputation in cases of BIID make appeals to the envisioned harms that such an intervention would cause, harms such as the creation of a lifelong physical disability where none existed before. However, this concept of harm is often based on a normative biomedical model of (...) health and disability, a model which conflates amputation with impairment, and impairment with a disability. This article challenges the prima facie harms assumed to be inherent in limb amputation and argues in favour of a potential treatment option for those with BIID. To do this, it employs the social model of disability as a means to separate the concept of impairment and disability and thereby separate the acute and chronic harms of the practice of therapeutic healthy-limb amputation. It will then argue that provided sufficient measures are put in place to ensure that those with atypical bodily constructions are not disadvantaged, the chronic harms of elective amputation would cease to be. (shrink)

Prior to their announcement of the birth of gene-edited twins in China, Dr. He Jiankui and colleagues published a set of draft ethical principles for discussing the legal, social, and ethical aspects of heritable genome interventions. Within this document, He and colleagues made it clear that their goal with these principles was to “clarify for the public the clinical future of early-in-life genetic surgeries” or heritable genome editing. In light of He’s widely criticized gene editing experiments it is of interest (...) to place these draft principles in the larger ethical debate surrounding heritable genome editing. Here we examine the principles proposed by He and colleagues through the lens of Beauchamp and Childress’ Principles of Biomedical Ethics. We also analyze the stated goal that the “clinical future” of heritable genome editing was clarified by He and colleagues’ proposed principles. Finally, we highlight what might be done to help prevent individual actors from pushing forward ahead of broad societal consensus on heritable genome editing. (shrink)

Eine patientengerechte Versorgung ist ein hohes Ziel. Unangemessene Behandlung wie Unter- oder Überversorgung zu erkennen und zu vermeiden, stellt Ärztinnen/Ärzte und Pflegende am Krankenbett vor schwierige Entscheidungen. Hier ist die Entwicklung von praxistauglichen Orientierungshilfen angezeigt, die wissenschaftlichen Kriterien genügen und nicht allein auf Konsens beruhen. Die vorliegende Arbeit versucht, zentrale Normen zur Vermeidung von Über- und Unterversorgung zu formulieren und theoretisch zu fundieren. Dafür wird auf Basis einer Interessen-basierten Ethik eine Graduierung der Autonomie vorgenommen, indem zwischen schwacher und starker Autonomie (...) unterschieden wird. (shrink)

Over the past decades, great strides have been made to professionalize and increase access to transgender medicine. As the evidence base grows and conceptualizations regarding gender dysphoria/gender incongruence evolve, so too do ideas regarding what constitutes good treatment and decision-making in transgender healthcare. Against this background, differing care models arose, including the ‘Standards of Care’ and the so-called ‘Informed Consent Model’. In these care models, ethical notions and principles such as ‘decision-making’ and ‘autonomy’ are often referred to, but left unsubstantiated. (...) This not only transpires into the consultation room where stakeholders are confronted with many different ethical challenges in decision-making, but also hampers a more explicit discussion of what good decision-making in transgender medicine should be comprised of. The aim of this paper is to make explicit the conceptual and normative assumptions regarding decision-making and client autonomy underpinning the ‘Standards of Care’ and ‘Informed Consent Model’ currently used in transgender care. Furthermore, we illustrate how this elucidation aids in better understanding stakeholders’ ethical challenges related to decision-making. Our ethical analysis lays bare how distinct normative ambiguities in both care models influence decision-making in practice and how foregrounding one normative model for decision-making is no moral panacea. We suggest that the first steps towards good decision-making in gender-affirming medical care are the acknowledgement of its inherent normative and moral dimensions and a shared, dialogical approach towards the decision-making process. (shrink)

There are instances where the provider of an intervention, such as surgery, has failed to obtain necessary informed consent from the recipient of the intervention. Perhaps the surgeon has failed to warn the patient that she may go into a coma, or even be killed, from the surgery. Sometimes, as a result of this intervention, the recipient cannot give informed consent to researchers for the release of their personal data precisely because of the intervention. If they are in a coma, (...) they cannot be reached. Sometimes, this personal data itself can prove that the provider of the intervention failed to obtain informed consent for the intervention. For example, a personal file may include a consent form that does not include warnings about the risk of falling into a coma from the surgery. Paradoxically, those who cannot give informed consent for the disclosure of their personal data on an intervention may have been especially ill-informed about the repercussions of the intervention. In such instances, should researchers ever use the data and disclose the data in their research? In an attempt to demonstrate when this dilemma may be relevant, and how it may be solved, I will present a real-world case of this dilemma in my own empirical research on refugees who agreed to repatriate to their countries of origin from Israel. I will consider what theories on consent, if any, can help us resolve this dilemma. (shrink)

Although the principle of respect for personal autonomy has been the subject of debate for almost 40 years, the conversation has often suffered from lack of clarity regarding the philosophical traditions underlying this principle. In this article, I trace a genealogy of autonomy, first contrasting Kant’s autonomy as moral obligation and Mill’s teleological political liberty. I then show development from Mill’s concept to Beauchamp and Childress’ principle and to Julian Savulescu’s non-teleological autonomy sketch. I argue that, although the reach for (...) a new principle to guide choices in physician–patient relationships can rightfully be seen as important, the notion that is now called autonomy within bioethics has corollaries that undermine critical aspects of medical care. As such, there is need for a richer account of the interplay between the free choice of patients and the informed recommendations of doctors. (shrink)

Rapid Ethical Assessment is an approach used to design context tailored consent process for voluntary participation of participants in research including human subjects. There is, however, limited evidence on the design of ethical assessment in studies targeting cancer patients in Ethiopia. REA was conducted to explore factors that influence the informed consent process among female cancer patients recruited for longitudinal research from Addis Ababa Population-based Cancer Registry. Qualitative study employing rapid ethnographic approach was conducted from May–July, 2017, at the Tikur (...) Anbessa Specialized Referral Hospital. In-depth and key informants’ interviews were conducted among purposively selected 16 participants. Regular de-briefings among the study team helped to identify emerging themes and ensure saturation. Interviews and debriefings were tape recorded in Amharic, and transcribed and translated to English. Coding of the transcripts was facilitated by use of NVivo software. Thematic analysis was employed to respond to the initial questions and interpret findings. Perceived barriers to voluntary study participation included lack of reporting back study results of previous studies, the decision making status of women, hopelessness or fatigue in the patients, shyness of the women, data collectors approach to the patient, and patient’s time constraints. Most of the patients preferred oral over written consent and face-to-face interview over telephone interview. Provision of detail information about the study, using short and understandable tool, competent, compassionate and respectful enumerators of the same gender were suggested to assure participation. Due to the perceived severity, the use of the term “cancer” was associated with fear and anxiety. Alternatively, uses of phrases like “breast or cervical illness/disease” were suggested during patient interviews. Voluntary participation is not straight forward but affected by different factors. Using competent, compassionate and respectful enumerators, short and precise questioning tools to limit the time of the interview could improve voluntary participation. Moreover, careful consideration of the patients and families concept of the disease such as wording and information has to be taken into account. This assessment helped in improving the consent process of the ongoing project on breast and cervical cancer patients. (shrink)

BackgroundVulnerability is a key concept in traditional and contemporary bioethics. In the philosophical literature, vulnerability is understood not only to be an ontological condition of humanity, but also to be a consequence of contingent factors. Within bioethics debates, vulnerable populations are defined in relation to compromised capacity to consent, increased susceptibility to harm, and/or exploitation. Although vulnerability has historically been associated with older adults, to date, no comprehensive or systematic work exists on the meaning of their vulnerability. To fill this (...) gap, we analysed the literature on aged care for the meaning, foundations, and uses of vulnerability as an ethical concept.MethodsUsing PRISMA guidelines, we conducted a systematic review of argument-based ethics literature in four major databases: PubMed, Embase®, Web of Science™, and Philosopher’s Index. These covered biomedical, philosophy, bioethical, and anthropological literature. Titles, abstracts, and full texts of identified papers were screened for relevance. The snowball technique and citation tracking were used to identify relevant publications. Data analysis and synthesis followed the preparatory steps of the coding process detailed in the QUAGOL methodology.ResultsThirty-eight publications met our criteria and were included. Publication dates ranged from 1984 to 2020, with 17 publications appearing between 2015 and 2020. Publications originated from all five major continents, as indicated by the affiliation of the first author. Our analyses revealed that the concept of vulnerability could be distinguished in terms of basic human and situational vulnerability. Six dimensions of older adults’ vulnerability were identified: physical; psychological; relational/interpersonal; moral; sociocultural, political, and economic; and existential/spiritual. This analysis suggested three ways to relate to older adults’ vulnerability: understanding older adults’ vulnerability, taking care of vulnerable older adults, and intervening through socio-political-economic measures.ConclusionsThe way in which vulnerability was conceptualised in the included publications overlaps with distinctions used within contemporary bioethics literature. Dimensions of aged care vulnerability map onto defining features of humans, giving weight to the claim that vulnerability represents an inherent characteristic of humans. Vulnerability is mostly a value-laden concept, endowed with positive and negative connotations. Most publications focused on and promoted aged care, strengthening the idea that care is a defining practice of being human. (shrink)

It is commonly believed that disability disqualifies people from full participation in or recognition by society. This view is rooted in eugenic logic, which tells us that our world would be a better place if disability could be eliminated. In opposition to this position, I argue that that disability is inherent in the human condition and consider the bioethical question of why we might want to conserve rather than eliminate disability from our shared world. To do so, I draw together (...) an eclectic, rather than systematic, configuration of counter-eugenic arguments for conserving disability. The idea of preserving intact, keeping alive, and even encouraging to flourish denoted by conserve suggests that disabilities would be better understood as benefits rather than deficits. I present, then, a reading of disability as a potentially generative resource rather than unequivocally restrictive liability. In other words, what I consider here is the cultural and material contributions disability offers to the world. (shrink)

Bioethicists invoke a duty to rescue in a wide range of cases. Indeed, arguably, there exists an entire medical paradigm whereby vast numbers of medical encounters are treated as rescue cases. The intuitive power of the rescue paradigm is considerable, but much of this power stems from the problematic way that rescue cases are conceptualized—namely, as random, unanticipated, unavoidable, interpersonal events for which context is irrelevant and beneficence is the paramount value. In this article, I critique the basic assumptions of (...) the rescue paradigm, reframe the ethical landscape in which rescue obligations are understood, and defend the necessity and value of a wider social and institutional view. Along the way, I move back and forth between ethical theory and a concrete case where the duty to rescue has been problematically applied: the purported duty to regularly return incidental findings and individual research results in genomic and genetic research. (shrink)

A child is a developing person with evolving capacities that include autonomy, mental capacity and capacity to assume responsibility. Hence, children are entitled to participatory rights in South Africa as observed in the Children’s Act 38 of 2005. According to section 129 of the Act a child may consent to his or her own medical treatment provided that he or she is over the age of 12 years and is of sufficient maturity and decisional capacity to understand the various implications (...) of the treatment including the risks and benefits thereof. However, the Act does not provide a definition for what qualifies as ‘sufficient maturity’ nor does it stipulate how health professionals ought to assess the decisional capacity of a child. In addition, South Africa is a culturally diverse country. The Western liberal notion of autonomy may not necessarily find equal prominence in the mores of people with a different worldview. Hence we demonstrate a few salient comparisons between legal liberal moral theory and African communitarianism as pertinent to the autonomy of the child. Children are rights-holders by virtue of their humanity. Their dignity as individual human persons affords them the entitlement to human rights as contemplated under the Constitution of the Republic of South Africa. However, contrary to the traditional Western notion of individual autonomous persons African societies hold a communalistic notion of person hence there is less regard for individual autonomy and rights with more emphasis on the communal good and maintaining the continuity of relationships and interdependencies shared within a community. A child considered in this view is not regarded as a full person. This implies that decisions concerning the child, including consent to medical treatment are discussed and determined by the community to which the child belongs. Lastly, in this article, we draw on the notion of capacity for responsibility to produce a pragmatic definition of sufficient maturity. It seems reasonable to suggest a move away from a general legal age of consent for medical treatment toward more individualised, context-specific approaches in determining the maturity of a child patient to consent to medical treatment. Perhaps, decision-making with respect to consent to the medical treatment of a child belonging to a traditional African community where the notion of a person is embedded in communitarianism ought to involve the child’s parents/guardians/caregivers where possible provided that the best interests of the child are awarded priority. (shrink)

Emergency hormonal contraception (EHC) has been available from pharmacies in the UK without prescription for 11 years. In the Republic of Ireland this service was made available in 2011. In both jurisdictions the respective regulators have included ‘conscience clauses’, which allow pharmacists to opt out of providing EHC on religious or moral grounds providing certain criteria are met. In effect, conscientious objectors must refer patients to other providers who are willing to supply these medicines. Inclusion of such clauses leads to (...) a cycle of cognitive dissonance on behalf of both parties. Objectors convince themselves of the existence of a moral difference between supply of EHC and referral to another supplier, while the regulators must feign satisfaction that a form of regulation lacking universality will not lead to adverse consequences in the long term. We contend that whichever of these two parties truly believes in that which they purport to must act to end this unsatisfactory status quo. Either the regulators must compel all pharmacists to dispense emergency contraception to all suitable patients who request it, or a pharmacist must refuse either to supply EHC or to refer the patient to an alternative supplier and challenge any subsequent sanctions imposed by their regulator. (shrink)

Background There is little dispute that the ideal moral standard for surgical informed consent calls for surgeons to carry out a disclosure dialogue with patients before they sign the informed consent form. This narrative study is the first to link patient experiences regarding the disclosure dialogue with patient-surgeon trust, central to effective recuperation and higher adherence. Methods Informants were 12 Israelis, aged 29–81, who underwent life-saving surgeries. A snowball sampling was used to locate participants in their initial recovery process upon (...) discharge. Results Our empirical evidence indicates an infringement of patients’ right to receive an adequate disclosure dialogue that respects their autonomy. More than half of the participants signed the informed consent form with no disclosure dialogue, and thus felt anxious, deceived and lost their trust in surgeons. Surgeons nullified the meaning of informed consent rather than promoted participants’ moral agency and dignity. Discussion Similarity among jarring experiences of participants led us to contend that the conduct of nullifying surgical informed consent does not stem solely from constraints of time and resources, but may reflect an underlying paradox preserving this conduct and leading to objectification of patients and persisting in paternalism. We propose a multi-phase data-driven model for informed consent that attends to patients needs and facilitates patient trust in surgeons. Conclusions Patient experiences attest to the infringement of a patient’s right to respect for autonomy. In order to meet the prima facie right of respect for autonomy, moral agency and dignity, physicians ought to respect patient’s needs. It is now time to renew efforts to avoid negligent disclosure and implement a patient-centered model of informed consent. (shrink)

This paper looks at philosophical questions that arise in the context of AI alignment. It defends three propositions. First, normative and technical aspects of the AI alignment problem are interrelated, creating space for productive engagement between people working in both domains. Second, it is important to be clear about the goal of alignment. There are significant differences between AI that aligns with instructions, intentions, revealed preferences, ideal preferences, interests and values. A principle-based approach to AI alignment, which combines these elements (...) in a systematic way, has considerable advantages in this context. Third, the central challenge for theorists is not to identify ‘true’ moral principles for AI; rather, it is to identify fair principles for alignment that receive reflective endorsement despite widespread variation in people’s moral beliefs. The final part of the paper explores three ways in which fair principles for AI alignment could potentially be identified. (shrink)

ABSTRACT Does genetic relatedness define who is a mother or father and who incurs obligations towards or entitlements over children? While once the answer to this question may have been obvious, advances in reproductive technologies have complicated our understanding of what makes a parent. In a recent publication Bayne and Kolers argue for a pluralistic account of parenthood on the basis that genetic derivation, gestation, extended custody and sometimes intention to parent are sufficient (but not necessary) grounds for parenthood.1 Bayne (...) and Kolers further suggest that definitions of parenthood are underpinned by the assumption that ‘being causally implicated in the creation of a child is the key basis for being its parent’.2 This paper examines the claim that genetic relatedness is sufficient grounds for parenthood based on a causal connection between genetic parents and their offspring. I argue that parental obligations are about moral responsibility and not causal responsibility because we are not morally accountable for every consequence to which we causally contribute. My account includes the conditions generally held to apply to moral responsibility, i.e. freedom and foreseeability. I argue that parental responsibilities are generated whenever the birth of a child is a reasonably foreseeable consequence of voluntary actions. I consider the implications of this account for third parties involved in reproductive technologies. I argue that under some conditions the obligations generated by freely and foreseeably causing a child to exist can be justifiably transferred to others. (shrink)

In the recent literature across philosophy, medicine and public health policy, many influential arguments have been put forward to support the use of randomization procedures to allocate scarce life-saving resources. In this paper, I provide a systematic categorization and a critical evaluation of these arguments. I shall argue that those arguments justify using RAND to allocate SLSR in fewer cases than their proponents maintain and that the relevant decision-makers should typically allocate SLSR directly to the individuals with the strongest claims (...) to these resources rather than use RAND to allocate such resources. (shrink)