Primary health care is characterised by timely and appropriate health care access, delivered continuously over time to a specific population, providing a comprehensive service, with coordination of care for those that need it. Practitioners deal with a multiplicity of clinical issues within longitudinal relationships, embedded in the context of families and communities. We propose that these aspects of primary care have a bearing on how matters of decision making are considered and implemented. Further, the standard account of autonomous decision making (...) is not wholly adequate when applied to clinician–patient encounters in primary care. We add considerations of the impact of illness (however defined) and self-identity as also relevant to a more measured and full account. The context of primary care is quite different from that of secondary care. Although there are generalists who work in hospitals, we argue that this aspect and the other attributes of primary care generate special ethical considerations. One of these is how autonomy, or more fully, how respect for the principle of autonomy is considered and operationalised in community practice. In this study, we describe some theoretical aspects of autonomy and seek to apply, and challenge, these aspects in the context of clinical work in primary care. In doing so we will review the descriptors of primary care: why in essence it is different from other contexts of clinical work. (shrink)

Definition of the problem Assistive technologies, including “smart” instruments and artificial intelligence (AI), are increasingly arriving in older adults’ living spaces. Various research has explored risks (“surveillance technology”) and potentials (“independent living”) to people’s self-determination from technology itself and from the increasing complexity of sociotechnical interactions. However, the point at which self-determination of the individual is overridden by external influences has not yet been sufficiently studied. This article aims to shed light on this point of transition and its implications. Arguments (...) The identification of this “tipping point” could contribute to analysis of familiar issues of conflict between the ethical principles of beneficence and respect for autonomy. When using technology in the living spaces of older adults, relationships, among other factors, may play a crucial role in older adult’s self-determination. We find the tipping point to occur subjectively and variably. To this end, the article combines theoretical ethical considerations with two examples from a qualitative study illustrating the perspective of older adults aged 65–85 years. Conclusion The study of the tipping point underscores the importance of perceiving an older person’s perspective. Particularly at the tipping point, this might be the only way to effectively identify whether the individual concerned perceives their self-determination as externally overridden. In conceptualizing the tipping point itself as well as its variability, we might create the basis for a normative call to shift the tipping point to promote self-determination and prevent overriding the will of older adults. We highlight individual, relational, and societal implications of our findings. (shrink)

Background: Personal genomic testing (PGT) offers individuals genetic information about relationships, wellness, sporting ability, and health. PGT is increasingly accessible online, including in emerging markets such as Australia. Little is known about what consumers expect from these tests and whether their reflections on testing resonate with bioethics concepts such as autonomy. Methods: We report findings from focus groups and semi-structured interviews that explored attitudes to and experiences of PGT. Focus group participants had little experience with PGT, while interview participants had (...) undergone testing. Recordings were transcribed and analyzed using thematic analysis. Findings were critically interpreted with reference to bioethics scholarship on autonomy. Results: Fifty-six members of the public participated in seven focus groups, and 40 individuals were interviewed separately. Both groups valued the choice of PGT, and believed that it could motivate relevant actions. Focus group themes centered on the perceived value of choices, knowledge enabling action and knowledge about the self. Interview themes suggest that participants reflexively engage with their PGT information to make meaning, and that some appreciate its shortcomings. Critical interpretation of findings shows that while consumers of PGT are able to exercise a degree of autonomy in choosing, they may not be able to achieve a substantive conceptualization of autonomy, one that promotes alignment with higher-order desires. Conclusions: PGT consumers can critically reason about testing. However, they may uncritically accept test results, may not appreciate drawbacks of increased choice, or may overestimate the potential for information to motivate behavioral change. While consumers appear to be capable of substantive autonomy, they do so without ongoing support from companies. PGT companies promote a problematic (“default”) account of autonomy, reliant on empowerment rhetoric. This leaves consumers vulnerable to making decisions inconsistent with their higher-order desires. As PGT expands, claims about its power and value need to be carefully drawn. (shrink)

BackgroundMedia have increasingly reported on the difficulties associated with end-of-life decision-making in patients with Disorders of Consciousness (DOC), contextualizing such dilemma in detailed accounts of the patient’s life. Two of the first stories debated in the scientific community were those related to the cases of two women, one American, the other Italian, who captured attention of millions of people in the first years of this third millennium.MethodsMuch has been written about the challenges of surrogate decision-making for patients in DOC, but (...) less has been written comparing these challenges across legal systems and cultures. In our paper, we propose a systematic analysis of the final legal documents written by the American and Italian Courts in relation to the two cases, developing our discussion around three areas: the level of certainty/reliability of diagnosis and prognosis, the reconstruction of self-expression, time of illness and time of care. They are examples of the typical issues discussed by legal authors and allow us to understand the link and the difference between the legal and ethical perspectives.ResultsThe legal approach to the two cases has some common elements: the need to be certain about the diagnosis and prognosis and the fact that the clinical criteria are necessary in determining the most appropriate treatments, although these criteria are not sufficient unless they are supplemented by the patient’s will. The issue of relations takes on importance both from a legal and an ethical point of view, but from two different perspectives. While ethics safeguards relationships by guaranteeing their differences and makes them reconcilable, law safeguards relationships by guaranteeing the cold forms of respect, equality, impartiality, symmetry, reciprocity, and irreversibility. In this perspective, the link between the time of care and the decision of the family members assumes importance.ConclusionsThe most interesting point that emerges from our analysis is the issue of relationships and how they affect decisions, both from a legal and ethical point of view. For this reason, during the patients’ hospitalization, it is necessary to identify ways in which they might give their opinion about the moral issues underlying their choices. (shrink)

Family members do not have an official position in the practice of euthanasia and physician assisted suicide in the Netherlands according to statutory regulations and related guidelines. However, recent empirical findings on the influence of family members on EAS decision-making raise practical and ethical questions. Therefore, the aim of this review is to explore how family members are involved in the Dutch practice of EAS according to empirical research, and to map out themes that could serve as a starting point (...) for further empirical and ethical inquiry. A systematic mixed studies review was performed. The databases Pubmed, Embase, PsycInfo, and Emcare were searched to identify empirical studies describing any aspect of the involvement of family members before, during and after EAS in the Netherlands from 1980 till 2018. Thematic analysis was chosen as method to synthesize the quantitative and qualitative studies. Sixty-six studies were identified. Only 14 studies had family members themselves as study participants. Four themes emerged from the thematic analysis. 1) Family-related reasons to request EAS. 2) Roles and responsibilities of family members during EAS decision-making and performance. 3) Families’ experiences and grief after EAS. 4) Family and ‘the good euthanasia death’ according to Dutch physicians. Family members seem to be active participants in EAS decision-making, which goes hand in hand with ambivalent feelings and experiences. Considerations about family members and the social context appear to be very important for patients and physicians when they request or grant a request for EAS. Although further empirical research is needed to assess the depth and generalizability of the results, this review provides a new perspective on EAS decision-making and challenges the Dutch ethical-legal framework of EAS. Euthanasia decision-making is typically framed in the patient-physician dyad, while a patient-physician-family triad seems more appropriate to describe what happens in clinical practice. This perspective raises questions about the interpretation of autonomy, the origins of suffering underlying requests for EAS, and the responsibilities of physicians during EAS decision-making. (shrink)

Self‐management is often presented as a panacea for chronic disease care. It plays an important role at the policy level and increasingly guides the delivery of health care services. Self‐management approaches to care are founded on traditional individualistic views of autonomy in which the patient is understood as being independent, rational, self‐interested, and self‐governing. This conceptualization of autonomy has been challenged, particularly by feminist scholars. In this paper I review predominant critiques of self‐management and the traditional individualistic view of autonomy. (...) I propose that a relational approach to autonomy, which is premised on social embeddedness and attends to social, political, and material conditions, is a more sound conception of autonomy capable of taking into consideration the complexities of illness experiences. I suggest that integrating a relational perspective of autonomy into self‐management will be valuable in guiding its progression and elaborate ways in which self‐management research and practice could benefit from incorporating a relational approach to autonomy. (shrink)

Patients in need of palliative care are often described as vulnerable. Being vulnerable can sometimes be interpreted as the opposite of being autonomous, if an autonomous person is seen as an independent, self-sufficient person who forms decisions independently of others. Such a dichotomous view can create a situation where one has experiences of vulnerability that cannot be reconciled with the central ethical principle of autonomy. The article presents a feminist ethical perspective on the conceptualisation of vulnerability in the context of (...) palliative care. It does so through the lens of the concepts of inherent and pathogenic vulnerability from the taxonomy on vulnerability suggested by Mackenzie et al. To differentiate between forms of vulnerability, is important since even though vulnerability can be regarded as a shared life condition it can be the product of practices creating harm to the patient. The article also presents an analysis of how vulnerability can be included in the interpretation of the ethical principle of autonomy, in order to be relevant in palliative care where vulnerability is salient, namely, as relational autonomy. Furthermore, two practical implications for nursing practice are suggested. Firstly, to acknowledge vulnerability as a shared life condition one needs training in order to neither be overwhelmed by one’s own vulnerability, nor become invulnerable when facing vulnerability in others. Secondly, to foster relational autonomy includes navigating between the patient exercising their autonomy within a framework of relations, and shielding the patient from paternalistic practices. Nurses could be particularly suited for this role, which includes creating an environment which is open and supportive; navigating between patient, family and staff; seeing and acknowledging the complex situation in which patient autonomy is actually played out; and promoting patient autonomy. (shrink)

Family involvement in healthcare decision-making for competent patients occurs to varying degrees in many communities around the world. There are different attitudes about who should make treatment decisions, how and why. Legal and professional ethics codes in most jurisdictions reflect and support the idea that competent patients should be enabled to make their own treatment decisions, even if others, including their healthcare professionals, disagree with them. This way of thinking contrasts with some cultural norms that put more emphasis on the (...) family as a decision-making entity, in some circumstances to the exclusion of a competent patient. Possible tensions may arise between various combinations of patient, family members and healthcare professionals, and healthcare professionals must tread a careful path in navigating family involvement in the decision-making process. These tensions may be about differences of opinion about which treatment option is best and/or on who should have a say or influence in the decision-making process. While some relevant cultural, legal and policy considerations vary from community to community, there are ethical issues that healthcare professionals need to grapple with in balancing the laws and professional codes on decision-making and the ethical principle of respecting patients and their autonomy. This paper will highlight and propose that a partial resolution to these issues may lie in relational understandings of autonomy, which in principle justify interventions by healthcare professionals and family that support patients in decision-making. (shrink)

For the past 40 years, the 14-day rule has governed and, by defining a clear boundary, enabled embryo research and the clinical benefits derived from this. It has been both a piece of legislation and a rule of good practice globally. However, methods now allow embryos to be cultured for more than 14 days, something difficult to imagine when the rule was established, and knowledge gained in the intervening years provides robust scientific rationale for why it is now essential to (...) conduct research on later stage human embryos. In this paper, I argue that the current limit for embryo research in vitro should be extended to 28 days to permit research that will illuminate our beginnings as well as provide new therapeutic possibilities to reduce miscarriage and developmental abnormalities. It will also permit validation of potentially useful alternatives. Through consideration of current ethical arguments, I also conclude that there are no coherent or persuasive reasons to deny researchers, and through them humanity, the knowledge and the innovation that this will generate. (shrink)

Nurses have their own ways of talking about their experiences of injustice in healthcare organizations. The aim of this article is to describe how nurses talk about their work‐life experiences and discuss the discursive effects that arise from nurses' use of language regarding their political agency. To this end, we present the findings garnered from a study focused on exploring how nurses deploy their political agency to project their idea of social and political justice in public healthcare organizations and how (...) they face the challenges and uncertainties of (re)thinking their institutional order when it does not resonate with their professional ethos. We then discuss the implications that nurses' use of language has in relation to their ability to deploy their political agency to oppose the forms of injustice they face in their daily practice. We conclude by stating that careful attention should be placed on understanding the discursive implications of nurses' use of language on their individual and collective emancipation in healthcare organizations. (shrink)

Background Relational autonomy is an alternative concept of autonomy in which an individual is recognized as embedded into society and influenced by relational factors. Social context, including social location, political structure, and social forces, significantly influence an agent to develop and exercise autonomy skills. The relational approach has been applied in clinical practice to identify relational factors impacting patient autonomy and decision-making, yet there is a knowledge gap in how these factors influence the demonstration of relational autonomy in the context (...) of medical decisions of adults. Objective The present study targeted the existing knowledge of what and how relational factors impact individuals making medical decisions using the theoretical framework of relational autonomy. Methods A meta-synthesis study was utilized. Four electronic databases, including Embase, OVID Medline, CINAHL, and PubMed, were searched, along with gray literature and reference lists, to identify relevant studies. Results 23 studies reporting 21 qualitative and two mixed-method studies were reviewed. Four themes emerged from the qualitative findings: (1) supportive relationships facilitate an individual’s relational autonomy; (2) obtaining comprehensive information from broader sources helps individuals exercise relational autonomy; (3) undue family pressure impedes the exercising of patient relational autonomy; and (4) healthcare providers’ dominant voice hampers the demonstration of relational autonomy. Conclusions Applying relational autonomy to assist adults in making well-considered decisions is essential. The meta-synthesis suggests establishing a supportive relationship between individuals, healthcare providers, and family. A supportive relationship will allow healthcare providers to make judgments in line with an individual’s values and wishes with the aim of promoting relational autonomy. Advance care planning was proposed as the effective solution to obtain a consensus between individuals and their families while respecting an individual’s values and preferences. Furthermore, it is considered crucial for healthcare providers to appreciate an individual's values and incorporate their preferences into recommendations. (shrink)

As given, the case presents at least two questions for the ethics consultant to explore: to what extent should Declan’s parent, Karesha, be involved in his health care decisions, and why is...

This study’s objective was to understand Colombian adolescents’ experiences and preferences regarding access to sexual and reproductive health services (SRHS), either alone or accompanied. A mixed-method approach was used, involving a survey of 812 participants aged eleven to twenty-four years old and forty-five semi-structured interviews with participants aged fourteen to twenty-three. Previous research shows that adolescents prefer privacy when accessing SRHS and often do not want their parents involved. Such findings align with the longstanding tendency to frame the ethical principle (...) of autonomy as based on independence in decision-making. However, the present study shows that such a conceptualization and application of autonomy does not adequately explain Colombian adolescent participants’ preferences regarding access to SRHS. Participants shared a variety of preferences to access SRHS, with the majority of participants attaching great importance to having their parents involved, to varying degrees. What emerges is a more complex and non-homogenous conceptualization of autonomy that is not inherently grounded in independence from parental involvement in access to care. We thus argue that when developing policies involving adolescents, policymakers and health professionals should adopt a nuanced “relational autonomy” approach to better respect the myriad of preferences that Colombian (and other) adolescents may have regarding their access to SRHS. (shrink)

This manuscript draws on the moral norms arising from the nuanced accounts of epistemic (in)justice and social identity in relational autonomy to normatively assess and articulate the ethical problems associated with using AI in patient care in light of the Black Box problem. The article also describes how black-boxed AI may be used within the healthcare system. The manuscript highlights what needs to happen to align AI with the moral norms it draws on. Deeper thinking – from other backgrounds other (...) than decolonial scholarship and relational autonomy – about the impact of AI on the human experience needs to be done to appreciate any other barriers that may exist. Future studies can take up this task. (shrink)

The author reviews various conceptions of autonomy to show that humans are actually not autonomous, strictly speaking. He argues for a need to rethink the personal autonomy approaches to HIV testing in sub-Saharan Africa (SSA) countries. HIV/AIDS has remained a leading cause of disease burden in SSA. It is important to bring this disease burden under control, especially given the availability of current effective antiretroviral regimens in low- and middle-income countries. In most SSA countries the ethic or value of personal (...) autonomy or self-determination is promoted as primary in HIV testing decision-making. SSA policymakers have an ontological and moral duty to adopt HIV testing policies that reflect human and medical realities, relationships, local contexts, and respect human rights for both individuals and others who are affected by HIV in society. Without rethinking the value of autonomy in HIV testing decision-making, the article cautions that attainment of the Sustainable Development Goal (SDG) 3 and the UNAIDS fast-track strategy that explicitly call to end the epidemic by 2030 will not be feasible for SSA. (shrink)

We discuss a case where medically optimal investigations of health problems in a donor-conceived child would require their egg donor to participate in genetic testing. We argue that it would be justified to contact the egg donor to ask whether she would consider this, despite her indicating on a historical consent form that she did not wish to take part in future research and that she did not wish to be informed if she was found to be a carrier of (...) a ‘harmful inherited condition’. We suggest that we cannot conjecture what her current answer might be if, by participating in clinical genetic testing, she might help reach a diagnosis for the donor-conceived child. At the point that she made choices regarding future contact, it was not yet evident that the interests of the donor-conceived child might be compromised by her answers, as it was not foreseen that the egg donor’s genome might one day have the potential to enable diagnosis for this child. Fertility consent forms tend to be conceptualised as representing incontrovertible historical boundaries, but we argue that rapid evolution in genomic practice means that consent in such cases is better seen as an ongoing and dynamic process. It cannot be possible to compel the donor to aid in the diagnosis of the donor-conceived child, but she should be given the opportunity to do so. (shrink)

Concealment, or the deliberate withholding of information from others, is of fundamental sociological interest. Yet, a general theoretical framework of concealment is missing from the sociological canon. This paper specifies a model that builds on and goes beyond existing accounts of concealment by emphasizing the desire for autonomy. I propose that the desire for autonomy, and the subjective assessment of concealment as the best route to achieve autonomy, lead individuals to attempt concealment. After specifying a dyadic model based on the (...) concealer (ego) and the target of concealment (alter), I incorporate ego-alter power differentials, network dynamics, and norms about privacy and concealment into a multilevel model of how concealment is initiated and maintained. (shrink)

Self‐care, or self‐management, is presented in healthcare policy as a precursor to patient empowerment and improved patient outcomes. Alternatively, critiques of the self‐care agenda suggest that it represents an over‐reliance on individual autonomy and responsibility, without adequate support, whereby ‘self‐care’ is potentially unachievable and becomes ‘care left undone’. In this sense, self‐care contributes to a blame culture where ill‐health is attributed to personal behaviours or lack thereof. Furthermore, self‐care may represent a covert form of rationing, as the fiscal means to (...) enable effective self‐care and supplement, or replace, self‐care capacities, is not provided. This paper explores these arguments through a contemporary ethical analysis of the self‐care agenda. The terms self‐care and self‐management are used interchangeably throughout whereby self‐management is understood as a point in the wider self‐care continuum. (shrink)

COVID-19 has turned many ethical principles and presuppositions upside down. More precisely, the principle of respect for autonomy has been shown to be ill suited to face the ethical challenges posed by the current health crisis. Individual wishes and choices have been subordinated to public interests. Patients have received trial therapies under extraordinary procedures of informed consent. The principle of respect for autonomy, at least in its mainstream interpretation, has been particularly questioned during this pandemic. Further reflection on the nature (...) and value of autonomy is urgently needed. Relational autonomy has been proposed as an alternative account of autonomy that can more adequately respond to contemporary ethical issues in general and to a pandemic such as the one we are currently facing in particular. As relational autonomy is an emerging notion in current bioethics, it requires further consideration and development to be properly operationalized. This paper aims to show how six different philosophical branches––namely, philosophy of nature, philosophical anthropology, existential phenomenology, discourse ethics, hermeneutics, and cultural anthropology––have incorporated the category of relation throughout the twentieth century. We first delve into primary philosophical sources and then apply their insights to the specific field of medical ethics. Learning from the historical developments of other philosophical fields may provide illumination that will enable bioethics to experience a successful “relational turn”, which has been partially initiated in contemporary bioethics but not yet achieved. (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)

Respect for patient autonomy is paramount in resolving ethical tensions in end-of-life care. The concept of relational autonomy has contributed to this debate; however, scholars often use this concept in a fragmented manner. This leads to partial answers on ascertaining patients’ true wishes, meaningfully engaging patients’ significant others, balancing interests among patients and significant others, and determining clinicians’ obligations to change patients’ unconventional convictions to enhance patient autonomy. A satisfactory solution based on relational autonomy must incorporate patients’ competence (apart from (...) decisional capacity), authenticity (their true desires or beliefs) and the involvement level of their significant others. To that end, we argue that John Christman’s procedural approach to relational autonomy provides critical insights, such as the diachronic or socio-historical personhood, sustained critical reflection and his recent explication of the nature of asymmetrical relationships and helpful interlocutors. This study reviews Christman’s account, proposes minor modifications and advocates for an integrated three-dimensional model for medical decision-making. Clarifying the relationship among the three elements promotes an ethical framework with a coherent understanding of relational autonomy. This model not only provides a descriptive and normative framework for end-of-life care practice but also reconsiders the nature of the clinician–patient relationship and its normative implications. We further present a case study to illustrate the merits of our proposed model. Altogether, our proposal will help navigate complex medical decision-making, foster trust and negotiate shared values between patients and their significant others, particularly in end-of-life care. (shrink)

The global increase in patients with chronic conditions has led to increased interest in ethical issues regarding such conditions. A basic biomedical principle—respect for autonomy—is being reexamined more critically in its clinical implications. New accounts of this basic principle are being proposed. While new accounts of respect for autonomy do underpin the design of many public programs and policies worldwide, addressing both chronic disease management and health promotion, the risk of applying such new accounts to clinical setting remain understudied. However, (...) the application of new accounts of respect for autonomy to clinical settings could support disrespectful attitudes toward or undue interference with patients with chronic conditions. Reconsidering autonomy and respect using Kantian accounts, this paper proposes respect for persons as an alternative basic bioethical principle to respect for autonomy. Unlike the principle of respect for persons in the Belmont Report, our principle involves respecting any patient’s decisions, behaviors, emotions, or life-style regardless of his or her “autonomous” capabilities. Thus, attitudes toward patients should be no different irrespective of the assessment of their decisional or executive capabilities. (shrink)

Drawing on the views of donors and recipients about anonymity in a country that is experiencing a transition towards non-anonymous gamete donation mandated by the Constitutional Court, we explore how the intersection between rights-based approaches and an empirical framework enhances recommendations for ethical policy and healthcare. Between July 2017 and April 2018, 69 donors and 147 recipients, recruited at the Portuguese Public Bank of Gametes, participated in this cross-sectional study. Position towards anonymity was assessed through an open-ended question in a (...) self-report questionnaire, which was subject to content analysis. Preference for an anonymous donation regime was mentioned by 82.6% of donors and 89.8% of recipients; and all those with children. Instead of the rights-based reasoning used by the Constitutional Court, donors highlighted concerns over future relationships and recipients focused on socioethical values linked with the safeguard of safety, privacy and confidentiality. The remaining participants advocated the choice between anonymity or non-anonymity, invoking respect for their autonomy. The complex, diverse ethical views and reasoning of donors and recipients expand a traditionally dichotomous discussion. Their perspectives challenge the transition towards non-anonymity and international guidelines, raising awareness to the need for their involvement in the design of policies to enable choice according to their values and preferences, and of psychosocial counselling responsive to their socioethical concerns and sensitive to their parental status. Empirical frameworks complement rights-based approaches to uphold justice, fairness and equal respect, and to incorporate utility, beneficence and non-maleficence in policymaking and healthcare in the transition towards non-anonymity. (shrink)

COVID-19 continues to dominate 2020 and is likely to be a feature of our lives for some time to come. Given this, how should health systems respond ethically to the persistent challenges of responding to the ongoing impact of the pandemic? Relatedly, what ethical values should underpin the resetting of health services after the initial wave, knowing that local spikes and further waves now seem inevitable? In this editorial, we outline some of the ethical challenges confronting those running health services (...) as they try to resume non-COVID-related services, and the downstream ethical implications these have for healthcare professionals’ day-to-day decision making. This is a phase of recovery, resumption and renewal; a form of reset for health services.1 This reset phase will define the ‘new normal' for healthcare delivery, and it offers an opportunity to reimagine and change services for the better. There are difficulties, however, healthcare systems are already weakened by austerity and the first wave of COVID-19 and remain under stress as the pandemic continues. The reset period is operating alongside, rather than at the end, of the pandemic and this creates difficult ethical choices. ### Balancing the greater good with individual care Pandemics—and public health emergencies more generally—reinforce approaches to ethics that emphasise or derive from the interests of communities, rather than those grounded in the claims of the autonomous individual. The response has been to draw on more public health focused ethics, ‘if demand outstrips the ability to deliver to existing standards, more strictly utilitarian considerations will have to be applied, and decisions about how to meet the individual's need will give way to decisions about how to maximise overall benefit’.2 Alongside this, effective …. (shrink)

Reproductive freedom plays a pivotal role in debates on the ethics of procreation. This moral principle protects people’s interests in procreative matters and allows them discretion over whether to have children, the number of children they have and, to a certain extent, the type of children they have. Reproductive freedom’s theoretical and political emphasis on people’s autonomy and well-being is grounded in an individual-centred framework for discussing the ethics of procreation. It protects procreators’ interests and significantly reduces the permissible grounds (...) for interference by third parties. In this article I show that procreative decisions have far-reaching effects on the composition and size of the population. The upshot of considering these effects allows for the appreciation of the inadequacy of a framework that solely considers individual (i.e. procreators’) interests to discuss the ethics of procreation. To address such inadequacy, I assess costs and benefits of past and present proposals to reflect on procreation in such a way as to consider its far-reaching effects. I conclude by arguing that reproductive freedom should be defended as an imperfect but instrumentally necessary tool. This framing would enable those participating in debates on the ethics of procreative decisions to work towards an ethical framework that accounts for the cumulative effects of these decisions. (shrink)

Background Non-invasive prenatal testing (NIPT), which can screen for aneuploidies such as trisomy 21, is being implemented in several public healthcare systems across Europe. Comprehensive communication and information have been highlighted in the literature as important elements in supporting women’s reproductive decision-making and addressing relevant ethical concerns such as routinisation. Countries such as England and France are adopting broadly similar implementation models, offering NIPT for pregnancies with high aneuploidy probability. However, we do not have a deeper understanding of how professionals’ (...) counselling values and practices may differ between these contexts. Methods In this paper, we explore how professionals in England and France support patient decision-making in the provision of NIPT and critically compare professional practices and values. We draw on data from semi-structured interviews with healthcare professionals. Results Both English and French professionals emphasised values relating to patient choice and consent. However, understandings and application of these values into the practice of NIPT provision differed. English interviewees placed a stronger emphasis on interpreting and describing the process of counselling patients and clinical care through a “principle” lens. Their focus was on non-directiveness, standardisation, and the healthcare professional as “decision-facilitator” for patients. French interviewees described their approach through a “procedural” lens. Their focus was on formal consent, information, and the healthcare professional as “information-giver”. Both English and French professionals indicated that insufficient resources were a key barrier in effectively translating their values into practice. Conclusion Our findings illustrate that supporting patient choice in the provision of NIPT may be held as an important value in common on a surface level, but can be understood and translated into practice in different ways. Our findings can guide further research and beneficially inform practice and policy around NIPT provision. (shrink)

Definition of the problemThe Shared Decision Making model is becoming increasingly popular also in the German-speaking context, but it only considers values of patients to be relevant for medical decisions. Nevertheless, studies show that the values of physicians are also influential in medical decisions. Moreover, physicians are often unaware of this influence, which makes it impossible to control it.ArgumentsThe influence of both patients’ and physicians’ values is examined from an empirical and normative perspective. The review about the empirical data provides (...) a necessary overview about the status quo, whereas I deduct rules for value-influenced behaviour in the decision making process in the normative approach. Therefore, different scenarios are taken into account to explore in which situations it is acceptable for physicians to let their values be part of the decision making process. The conscious use of values is only possible, when physicians are aware of their influence. To raise awareness, the best option would be to educate future physicians about it in their training. Therefore, this article provides a teaching concept for a unit that could be part of an ethics class for physicians in training. Furthermore, patient’s rights and responsibilities in the decision making process are discussed.ConclusionI conclude that it is necessary to take the influence of values into account and include this knowledge into the training of physicians. Conclusively, recommendations for patients and physicians and their dealing with values in shared decision making processes are suggested. (shrink)

Background In Saudi clinical settings, cultural influences can give a patient’s family authority to override the patient’s autonomous right to make informed health-related decisions. Cultural values should not prevent patients from exercising their genuine preferences when making medical decisions in their own best interests. Discussion This article discusses the moral implications of family-centred medical decisions for autonomous patients who are competent and capable of making decisions. The author argues that socio-cultural values do not justify the decision to override patient autonomy (...) when patients express a preference for making their own choices. Conclusion The author recommends the use of a model of shared decision-making that accounts for both individual and relational conceptions of autonomy, approaching patients’ preferences in all medical encounters with the aim of minimising the potential for socio-cultural values to undermine patient autonomy. Although this approach is a safeguard against both family and medical paternalism, allowance is made for clinicians to act in weakly paternalistic ways when patients at high risk of exacerbating existing medical conditions are likely to benefit from delaying or limiting the disclosure of potentially distressing but non-fatal diagnoses and prognoses. Thus, the author argues that even in a culture that supports family involvement in management decisions, physicians should respect patient autonomy by asking patients for their preferences in the disclosure of their medical diagnoses, prognoses and management options and verifying patients’ preferences about the roles they wish their families to play (if any) in health-related decisions. (shrink)

Background The principle of respect for autonomy (PRA) is a central tenet of bioethics. In the quest for a global bioethics, it is pertinent to ask whether this principle can be applied as it is to cultures and societies that are devoid of the Western sociopolitical historical pressures that led to its emergence. Relational autonomists have argued for a more inclusive approach to patient autonomy which takes into account factors such as interdependency and social relations. However, at the outset of (...) any relational approach, it is necessary to identify underlying factors that influence patient autonomy in non-Western cultures. Objective To conduct a review of the literature to uncover the mechanisms through which social, cultural, and religious factors influence and impact the application of the PRA in healthcare decision-making in non-Western cultures and societies. Methods We conducted a systematic review through a comprehensive search of three major electronic databases of biomedical sciences. Returned citations were imported to Covidence, full texts were assessed for eligibility, included articles were thoroughly reviewed and data was synthesized. PRISMA guidelines were followed. Results Our search retrieved 590 non-duplicate results, 50 of which were included after screening and full-text eligibility checks. The included studies were predominantly qualitative in nature, with few quantitative, mixed-methods, and review studies included. Our synthesis of data identified nine key factors that influenced patients’ autonomous decision-making through cultural, social, religious, or intersectional pathways. Conclusion Two main conclusions emerge from this review. Firstly, there is a notable dearth of bioethical research examining the influence of diverse factors on patients’ inclination towards different conceptions of autonomy. Secondly, the analysis of prevalent collectivist cultures and deference of autonomy adds value to the solution-oriented relational autonomy debate. This raises questions regarding how decision-making can be truly autonomous in the presence of such large-scale factors, warranting further attention. (shrink)