This article makes a contribution to the on-going debates about universalism and cultural relativism from the perspective of sociology. We argue that bioethics has a universal range because it relates to three shared human characteristics,—human vulnerability, institutional precariousness and scarcity of resources. These three components of our argument provide support for a related notion of ‘weak foundationalism’ that emphasizes the universality and interrelatedness of human experience, rather than their cultural differences. After presenting a theoretical position on vulnerability and human rights, (...) we draw on recent criticism of this approach in order to paint a more nuanced picture. We conclude that the dichotomy between universalism and cultural relativism has some conceptual merit, but it also has obvious limitations when we consider the political economy of health and its impact on social inequality. (shrink)

Vulnerability has become a popular though controversial topic in bioethics, notably since 2000. As a result, a common body of knowledge has emerged distinguishing between different types of vulnerability, criticizing the categorization of populations as vulnerable, and questioning the practical implications. It is argued that two perspectives on vulnerability, i.e., the philosophical and political, pose challenges to contemporary bioethics discourse: they re-examine the significance of human agency, the primacy of the individual person, and the negativity of vulnerability. As a phenomenon (...) of globalization, vulnerability can only be properly addressed in a global bioethics that takes the social dimension of human existence seriously. (shrink)

Scholars and policymakers continue to struggle over the meaning of the word “vulnerable” in the context of research ethics. One major reason for the stymied discussions regarding vulnerable populations is that there is no clear distinction between accounts of research vulnerabilities that exist for certain populations and discussions of research vulnerabilities that require special regulations in the context of research ethics policies. I suggest an analytic process by which to ascertain whether particular vulnerable populations should be contenders for additional regulatory (...) protections. I apply this process to two vulnerable populations: the cognitively vulnerable and the economically vulnerable. I conclude that a subset of the cognitively vulnerable require extra protections while the economically vulnerable should be protected by implementing existing regulations more appropriately and rigorously. Unless or until the informed consent process is more adequately implemented and the distributive justice requirement of the Belmont Report is emphasized and operationalized, the economically disadvantaged will remain particularly vulnerable to the harm of exploitation in research. (shrink)

Central to ethical debates in contemporary mental health research are the rhetoric of parity of esteem, challenges underpinned by the social construct of vulnerability and the tendency to homogenis...

The notion that exploitation consists in taking wrongful advantage of another’s vulnerability is widespread in the philosophical literature. Considering the popularity of this view, it is disappointing to find that very few authors attempt to provide substantive accounts of characteristics they consider relevant vulnerabilities (i.e., those pertinent to exploitation), as well as of relevant features which make taking advantage of those vulnerabilities wrongful. In this paper, I analyze the few approaches (notably those presented by Ruth Sample and Robert Goodin) that (...) in fact provide such accounts, and I examine whether and how they pertain to exploitation in general, as well as to exploitation in more personal/intimate relationships. I conclude that these vulnerability-based accounts of exploitation are either too vague or too restrictive, since they tend to leave out many instances of exploitation (especially those within personal and intimate relationships), and are as such inadequate. (shrink)

Neurodiversity has remained a controversial concept over the last decade. In its broadest sense the concept of neurodiversity regards atypical neurological development as a normal human difference. The neurodiversity claim contains at least two different aspects. The first aspect is that autism, among other neurological conditions, is first and foremost a natural variation. The other aspect is about conferring rights and in particular value to the neurodiversity condition, demanding recognition and acceptance. Autism can be seen as a natural variation on (...) par with for example homosexuality. The broad version of the neurodiversity claim, covering low-functioning as well as high-functioning autism, is problematic. Only a narrow conception of neurodiversity, referring exclusively to high-functioning autists, is reasonable. We will discuss the effects of DSM categorization and the medical model for high functioning autists. After a discussion of autism as a culture we will analyze various possible strategies for the neurodiversity movement to claim extra resources for autists as members of an underprivileged culture without being labelled disabled or as having a disorder. We will discuss their vulnerable status as a group and what obligation that confers on the majority of neurotypicals. (shrink)

Despite broad agreement that the vulnerable have a claim to special protection, defining vulnerable persons or populations has proved more difficult than we would like. This is a theoretical as well as a practical problem, as it hinders both convincing justifications for this claim and the practical application of required protections. In this paper, I review consent-based, harm-based, and comprehensive definitions of vulnerability in healthcare and research with human subjects. Although current definitions are subject to critique, their underlying assumptions may (...) be complementary. I propose that we should define vulnerability in research and healthcare as an identifiably increased likelihood of incurring additional or greater wrong. In order to identify the vulnerable, as well as the type of protection that they need, this definition requires that we start from the sorts of wrongs likely to occur and from identifiable increments in the likelihood, or to the likely degree, that these wrongs will occur. It is limited but appropriately so, as it only applies to special protection, not to any protection to which we have a valid claim. Using this definition would clarify that the normative force of claims for special protection does not rest with vulnerability itself, but with pre-existing claims when these are more likely to be denied. Such a clarification could help those who carry responsibility for the protection of vulnerable populations, such as Institutional Review Boards, to define the sort of protection required in a more targeted and effective manner. (shrink)

How people pay is critically important to consumers and businesses alike. Many consumers are choosing to pay for goods and services from an increasing number of options. Tech‐savvy urbanites buy coffee by tapping their phone on a reader. Parents returning from a night out use peer‐to‐peer payment apps, such as Venmo, to pay the sitter. The recent explosion of financial innovations promises faster, more efficient, and cheaper transactions. These increasing digital payment options coincide with decreased number and volume of cash (...) transactions. However, vulnerable populations face more constrained payment choices and often rely exclusively on cash. Without experience, devices, or acceptable credit histories, vulnerable populations may have little access to digital transactions. The advantages of falling digital costs and other benefits thus accrue to the digitally connected. At the same time, those who must transact in coins and paper money are likely to find their relative costs increasing. This paper highlights payment trends and the potential impact on vulnerable populations in the United States as we move toward a cashless society. This paper should stimulate discussions of public policy initiatives to mitigate digital payment issues for vulnerable people. (shrink)

The article analyses the three terms autonomy, dignity and vulnerability. The relevance and practical application of the terms is tested in two spheres. First, as guiding principles in the area of ethics of medicines and science. Second, as human rights principles, serving to guide the conduct of public policies for an effective realization of human rights. The article argues that all human beings have the same dignity, but that the autonomy—and therefore vulnerability—differs considerably. Simply said, with reduced autonomy comes increased (...) vulnerability, implying extra attention to the protective dimensions. The article finds that the three terms approach the protection of human beings in different ways and that all are relevant and applicable in both spheres, but that an isolated notion of autonomy and a ‘group-based’ notion of vulnerability are not adequate. (shrink)

Mercenaries are the target of moral condemnation far more often than they are subject of moral concern. One attempt at morally condemning mercenaries proceeds by analogy with prostitutes; mercenaries are ?the whores of war?. This analogy is unconvincing as a way of condemning mercenaries. However, careful comparison of mercenarism and prostitution suggests that, like many prostitutes, some mercenaries may be vulnerable individuals. If apt, this comparison imposes a consistency requirement: if one thinks certain prostitutes are appropriate subjects of moral concern (...) in light of their vulnerability, then one must think that mercenaries who are likewise vulnerable are also appropriate subjects of moral concern. In this paper I elucidate the relevant, morally significant sense of ?vulnerability?, and present evidence suggesting that at least some mercenaries are vulnerable in this sense. (shrink)

Defined as patients who ‘lack decision-making capacity and a surrogate decision-maker’, the unrepresented present a major quandary to clinicians and ethicists, especially in handling errors made in their care. A novel concern presented in the care of the unrepresented is how to address an error when there is seemingly no one to whom it can be disclosed. Given that the number of unrepresented Americans is expected to rise in the coming decades, and some fraction of them will experience a medical (...) error, creating protocols that answer this troubling question is of the utmost importance. This paper attempts to begin that conversation, first arguing that the precarious position of unrepresented patients, particularly in regards to errors made in their care, demands their recognition as a vulnerable patient population. Next, it asserts that the ethical obligation to disclose error still exists for the unrepresented because the moral status of error does not change with the presence or absence of surrogate decision-makers. Finally, this paper concludes that in outwardly acknowledging wrongdoing, a clinician or team leader can alleviate significant moral distress, satisfy the standards of a genuine apology, and validate the inherent and equivalent moral worth of the unrepresented patient. (shrink)

The European Union Commission’s whitepaper on Artificial Intelligence proposes shaping the emerging AI market so that it better reflects common European values. It is a master plan that builds upon the EU AI High-Level Expert Group guidelines. This article reviews the masterplan, from a culture cycle perspective, to reflect on its potential clashes with current societal, technical, and methodological constraints. We identify two main obstacles in the implementation of this plan: the lack of a coherent EU vision to drive future (...) decision-making processes at state and local levels and the lack of methods to support a sustainable diffusion of AI in our society. The lack of a coherent vision stems from not considering societal differences across the EU member states. We suggest that these differences may lead to a fractured market and an AI crisis in which different members of the EU will adopt nation-centric strategies to exploit AI, thus preventing the development of a frictionless market as envisaged by the EU. Moreover, the Commission aims at changing the AI development culture proposing a human-centred and safety-first perspective that is not supported by methodological advancements, thus taking the risks of unforeseen social and societal impacts of AI. We discuss potential societal, technical, and methodological gaps that should be filled to avoid the risks of developing AI systems at the expense of society. Our analysis results in the recommendation that the EU regulators and policymakers consider how to complement the EC programme with rules and compensatory mechanisms to avoid market fragmentation due to local and global ambitions. Moreover, regulators should go beyond the human-centred approach establishing a research agenda seeking answers to the technical and methodological open questions regarding the development and assessment of human-AI co-action aiming for a sustainable AI diffusion in the society. (shrink)

These CQ Sources were compiled by Bette Anton.

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)

Background Chemotherapy and/or radiotherapy treatments may cause premature ovarian failure and irreversible loss of fertility. In the context of childhood cancers, it is now acknowledged that possible negative effects of therapies on future reproductive autonomy are a major concern. While a few options are open to post-pubertal patients, the only immediate option currently open to pre-pubertal girls is cryopreservation of ovarian tissue and subsequent transplantation. The aim of the study was to address a current gap in knowledge regarding the offer (...) of fertility preservation by Ovarian Tissue Cryopreservation for prepubescent girls with cancer, and to explore current practices and attitudes of Canadian, French and Moroccan pediatric heme oncologists. The comparative perspective is relevant since legal frameworks surrounding fertility preservation and funding offered by the healthcare system vary greatly. Methods An online survey was sent to the 45 pediatric oncology centers in Canada, France and Morocco. Results A total of 39 centers responded. OTC is offered by almost all pediatric heme oncologists in France, very few in Canada, and none in Morocco. For pediatric hematologists/oncologists who do not propose fertility preservation in Canada, the reasons are: the technique is still experimental, it is not available locally and cost of the technique for the family. 97% of Canadian and 100% of Moroccan pediatric hematologists/oncologists think OTC should be funded by the healthcare system as it is in France and in the province of Quebec in Canada. Conclusions The results of this study show tremendous diversity in the provision of OTC across countries, whereby its offer is correlated with legislation and funding. We argue that the current reality, in which this technology is often not offered to families, raises ethical issues related to justice and equity of access, as well as informed consent and future reproductive autonomy. (shrink)

Biomedical research is increasingly carried out in low- and middle-income countries. International consensus has largely been achieved around the importance of valid consent and protecting research participants from harm. But what are the responsibilities of researchers and funders to share the benefits of their research with research participants and their communities? After setting out the legal, ethical and conceptual frameworks for benefit sharing, this collection analyses seven historical cases to identify the ethical and policy challenges that arise in relation to (...) benefit sharing. A series of recommendations address possible ways forward to achieve justice for research participants in low- and middle-income countries. (shrink)

Does the fact that humans are vulnerable, needy and dependent beings play an important role in Kantian ethics? It is sometimes claimed that it cannot and does not. I argue that it can and does. I distinguish between broad (all persons are vulnerable) and narrow (only some persons are vulnerable) senses of vulnerability, and explain the role of vulnerability in both senses in Kantian ethics. The basis of this argument is to show that the core normative focus of Kantian ethics (...) is on the dignity that human beings have in virtue of their capacity for rational agency. This implies that the empirical conditions under which human beings can acquire, sustain, exercise, and develop their rational capacities are of core moral importance in Kantian ethics. This explains why human vulnerabilities, including the vulnerability of human bodies, are important in Kantian ethics, since rational capacities in human agents (and the bodies those rational capacities depend upon) are highly vulnerable in all persons (vulnerability in the broad sense) and especially vulnerable in some sub-groups of persons (vulnerability in the narrow sense). (shrink)