The majority of healthcare professionals regularly witness fragility, suffering, pain and death in their professional lives. Such experiences may increase the risk of burnout and compassion fatigue, especially if they are without self-awareness and a healthy work environment. Acquiring a deeper understanding of vulnerability inherent to their professional work will be of crucial importance to face these risks. From a relational ethics perspective, the role of the team is critical in the development of professional values which can help to cope (...) with the inherent vulnerability of healthcare professionals. The focus of this paper is the role of Communities of Practice as a source of resilience, since they can create a reflective space for recognising and sharing their experiences of vulnerability that arises as part of their work. This shared knowledge can be a source of strength while simultaneously increasing the confidence and resilience of the healthcare team. (shrink)

At healthcare facilities worldwide, women during childbirth undergo medical procedures they haven’t consented to and experience mistreatment and disrespect. This phenomenon is recognized as obstetric violence (OV), a distinct form of gender violence. The resulting trauma carries both immediate and long-term implications, making it vital to address for promoting women’s health. OV is partly shaped by a narrow, paternalistic conception of vulnerability. A flawed conception of the vulnerability of pregnant women and fetuses has opened the door to medical control and (...) coercion during childbirth. In this paper we examine what role notions of vulnerability play in perpetuating OV and consider recent attitudinal shifts in research ethics as a model for addressing it. (shrink)

Kidney transplantation is a lifesaving medical treatment. However, very high demand for kidneys with low kidney donation causes a black market that exploits patients’ desperation and donors’ vulnerability. The current kidney donation programs fail to produce promising results to avoid illegal and unethical kidney trafficking and commercialism. Even though the primary goal of kidney donation is to increase the number of deceased organ donations, in some countries, like Turkey, due to religious or cultural concerns, it is impossible to supply adequate (...) deceased kidney donations. In this view, the aim of this paper is to examine kidney trafficking in the scope of Turkey's current organ donation system and propose a new model, named the Incentivized Kidney Donation Model (IKDM), to increase kidney donation from living donors. The model encompasses the following benefits offered to kidney donors; lifetime health insurance, exemptions from copayments/contribution shares, priority when receiving an organ, priority when finding a job, income tax exemptions for salaried employees, and free or discounted public utilities. This normative model has the potential to promote donors’ altruistic acts as well as the solidarity and loyalty among members of a society without violating ethical values and internationally accepted principles. (shrink)

As face shields are dusted off and conferences go virtual again, Omicron reminds us how the once-novel coronavirus ruptured our collective idea of medical training. For nearly 2 years, social media...

Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the Science, Health and (...) Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

The conduct of clinical trials involving placebo in developing countries in the presence of an existing effective treatment triggered an intense debate on the standard of care to be provided to those populations. Charges of exploitation of vulnerable groups and double standards have been raised by several scholars. In response to these concerns, the Declaration of Helsinki was revised in 2000, 2008 and 2013, eventually endorsing the golden standard instead of the local standard of care. The European Union adopted a (...) strategy on the Marketing Authorization of medicinal products tested in third countries, improved with Regulation 536/2014 on clinical trials on medicinal products for human use. Additional rules have been enacted by other international organizations. The present paper has the aim of analyzing scope and content of existing international and regional standards on placebo. (shrink)

The long-running discourse on respect for human dignity and autonomy in the physician-patient relationship pertaining to persons with dementia (PwDs) is explored deeply in this paper through the use of a real-life case, to highlight the complex interplay between autonomy and best interest when it comes to a PwD's experiential and critical interests. Many scenarios and perspectives are described and applies to the case. However, there are a few perspectives, which are touched upon that could do with further scrutiny. Firstly, (...) it has been argued that rigid adherence to the advance directives of PwDs means that PwDs will be the only people who are not allowed to ever change their minds. This withdrawal of a fundamental freedom hardly accords with respect for human dignity, or for any residual autonomy that these individuals may still enjoy. Secondly, viewing this case through the lens of care ethics, and incorporating the recently proposed conceptual framework of anthropological vulnerability, may reveal valuable insights regarding care provision and caring physician-patient relationships. These perspectives would analyse the role of relational ontology, particularly in relation to significant others, significant communities, and caregivers. (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)

Conducting research during or in the aftermath of disasters poses many specific practical and ethical challenges. This is particularly the case with research involving human subjects. The extraordinary circumstances of research conducted in disaster settings require appropriate regulations to ensure the protection of human participants. The goal of this study is to systematically and qualitatively review the existing ethical guidelines for disaster research by using the constant comparative method. We performed a systematic qualitative review of disaster research ethics guidelines to (...) collect and compare existing regulations. Guidelines were identified by a three-tiered search strategy: 1) searching databases, 2) an Internet search, and 3) a search of the references in the included documents from the first two searches. We used the constant comparative method for analysis of included guidelines. Fourteen full text guidelines were included for analysis. The included guidelines covered the period 2000-2014. Qualitative analysis of the included guidelines revealed two core themes: vulnerability and research ethics committee review. Within each of the two core themes, various categories and subcategories were identified. Some concepts and terms identified in analyzed guidelines are used in an inconsistent manner and applied in different contexts. Conceptual clarity is needed in this area as well as empirical evidence to support the statements and requirements included in analyzed guidelines. (shrink)

Zusammenfassung Lebensweltliche Bedingungen können sich als Barrieren in Hinblick auf die Durchführung einer von den Patient*innen gewählten – beispielsweise onkologischen – Therapie erweisen und den Therapieerfolg gefährden. Solche lebensweltlichen Herausforderungen lassen sich als Schichten sozialer Vulnerabilität begreifen. In dieser Arbeit wird untersucht, ob es geboten ist, herausfordernde soziale Lebensbedingungen von Patient*innen systematisch bei Therapieentscheidungen zu berücksichtigen. Hierfür wird der Befähigungsansatz nach Martha Nussbaum herangezogen, der die Achtung der Patient*innenautonomie mit der Möglichkeit der Unterstützung durch Dritte zusammenbringt. Anschließend werden anhand des (...) Schichten-Konzeptes von Florencia Luna Vorschläge dafür formuliert, wie soziale Vulnerabilitäten in der Praxis erfasst werden könnten. Obwohl die Überlegungen zum vorliegenden Text aus Beobachtungen der onkologischen Behandlungssituation heraus entstanden sind, lassen sie sich auch auf andere Therapiefelder, die lange Behandlungsdauern mit regelmäßigen Anwesenheiten verlangen, übertragen. Die vorliegende Untersuchung kommt zu dem Ergebnis, dass die ethische Pflicht besteht, lebensweltliche Faktoren in gemeinsame Therapieentscheidungen miteinzubeziehen und den Patient*innen ggf. Unterstützung anzubieten, um den Zugang zu der von ihnen gewählten Therapie zu ermöglichen. (shrink)

Despite the diversity of ageing, society and academics often describe and label older persons as a vulnerable group. As the term vulnerability is frequently interchangeably used with frailty, dependence, or loss of autonomy, a connection between older age and deficits is promoted. Concerning this, the question arises to what extent it may be helpful to refer to older persons as vulnerable specifically in the context of health care. After analyzing different notions of vulnerability, I argue that it is illegitimate to (...) conclude that older age is related to increased vulnerability. Much more, identifying older adults as a vulnerable group is closely related to ageism and can be associated with paternalistic benevolence and a tendency to overprotection, especially within health care. Additionally, even though older adults are more often in situations of increased vulnerability due to their potentially higher need for health care, I argue further that older adults mainly become a vulnerable group due to ageism. In this way, it can be concluded that the vulnerability of older adults does not originate in certain attributes of the group, but arises from a characteristic of society and, in turn, health personnel, namely ageism. Labeling older adults as vulnerable therefore is only helpful, when it is used to raise awareness of the widespread ageism in society, in this context, especially in the setting of health care, and the negative consequences thereof for older adults. (shrink)

In recent years, the concept of vulnerability has emerged in bioethics eroding the primacy of the autonomous and self-sufficient individual of the mainstream approach, regarding vulnerability as an obstacle to be removed. The Covid-19 pandemic has underscored an awareness that is not new, yet often little considered, namely that vulnerability is both a universal condition, and a special state dependent on social and economic causes, making the traditional concept of health inadequate to provide answers in the healthcare field. The aim (...) of the work is to examine how the pandemic has challenged the well-being conception of health, and the impact on healthcare and healthcare workers of a definition of health based on vulnerability. Indeed, the connection between health and vulnerability has some practical implications. Particularly, it can shift the focus to vulnerability of healthcare professionals, who have always been considered almost immune from it with the effect of obscuring the dimension of reciprocity between the patient and the physician. The Covid-19 pandemic has made a contribution in the process already began of rethinking health in the light of vulnerability, by bringing out the notion of relational health, and stressing the need to educate to a new approach, in order to increase the wellbeing of all subjects involved in the caring relationship. (shrink)

Book review of Haraway's Staying with the Trouble (2016).

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)

Supernumerary robotic limbs are innovative devices in the field of wearable robotics which can provide humans with unprecedented sensorimotor abilities. However, scholars have raised awareness of the ethical issues that would arise from the large adoption of technologies for human augmentation in society. Most negative attitudes towards such technologies seem to rely on an allegedly clear distinction between therapy and enhancement in the use of technological devices. Based on such distinction, people tend to accept technologies when used for therapeutic purposes (...) (e.g., prostheses), but tend to raise issues when similar devices are used for upgrading a physical or cognitive ability (e.g., supernumerary robotics limbs). However, as many scholars have pointed out, the distinction between therapy and enhancement might be theoretically flawed. In this paper, we present an alternative approach to the ethics of supernumerary limbs which is based on two related claims. First, we propose to conceive supernumerary limbs as tools that necessarily modify our psychological and bodily identity. At the same time, we stress that such a modification is not ethically bad in itself; on the contrary, it drives human interaction with the environment. Second, by comparing our view with the extended mind thesis, we claim that the mediation through tools is crucial for the formation of novel meanings and skills that constitute human interaction with the world. We will relate the latter claim to enactivism as a helpful theoretical perspective to frame issues related to artificial limbs and, more in general, to technologies for augmentation. Based on this approach, we finally sketch some suggestions for future directions in the ethics of supernumerary limbs. (shrink)

The psycho-social day-to-day experience of COVID-19 pandemic has shone some light on the wider scope of health vulnerability and has correspondingly enlarged the ethical debate surrounding the social implications of health and healthcare. This emerging paradigm is neither a single-handed problem of biomedical scientists nor of social analysts. It instead needs a strategically oriented collaborative and interdisciplinary preventive effort. To that effect, this article presents some socio-ethical reflections underscoring the judicious use of the insight from care ethics as an asset (...) in minimizing the possible propagation of the COVID-19 virus and the escalation of its vulnerability in the day-to-day human interaction. It further emphasizes that if this insight is overlooked, the effects of the diverse facets of the “shadow pandemics” of COVID-19—fallouts on both the affected and the infected—may equally be deadly. (shrink)