The elderly are often considered a vulnerable group in public and academic bioethical debates and regulations. In this paper, we examine and challenge this assumption and its ethical implications. We begin by systematically delineating the different concepts of vulnerability commonly used in bioethics, before then examining whether these concepts can be applied to old age. We argue that old age should not, in and of itself, be used as a marker of vulnerability, since ageing is a process that can (...) develop in a variety of different ways and is not always associated with particular experiences of vulnerability. We, therefore, turn to more fundamental phenomenological considerations in order to reconstruct from a first person perspective the intricate interconnections between the experiences of ageing and vulnerability. According to this account, ageing and old age are phenomena in which the basic anthropological vulnerability of human beings can manifest itself in an increased likelihood of harm and exploitation. Thus, we plead for a combined model of vulnerability that helps to avoid problems related to the current concepts of vulnerability. We conclude first that old age as such is not a sufficient criterion for being categorized as vulnerable in applied ethics, and second that reflections on ageing can help to develop a better understanding of the central role of vulnerability in human existence and in applied ethics. (shrink)

Mainstream academic debate on the ethics of human gene editing is currently not as inclusive as it should be. For example, it currently does not give due consideration to Indigenous groups and cultures, such as those living in rural and remote areas of Canada. Once such people are given due consideration, then several important points emerge, which have so far gone unnoticed or under‐emphasized in the debate. This article focuses on two of those points: (a) Some vulnerable people (...) who are currently being ignored in the debate may not desire to use gene editing, even if it is safe, effective and affordable, and they will have compelling reasons for making this decision; and (b) even if such people do decide to use the technology, the gene editing enterprise itself is unlikely to do much good for them (and may even be harmful to them), as it alarmingly misses the point regarding the underlying contributing causes of the most pressing problems that those people are facing. Therefore, the promise of the gene editing enterprise is a hollow one for some groups of vulnerable people. These considerations should be used more prominently to guide debate on the ethics of human gene editing. (shrink)

Poverty alleviation consumption, which we call altruistic consumption, has become a new effective way to help vulnerable groups, but there are a few empirical researches on poverty alleviation through consumption. This article takes China's poverty alleviation actions as the research object, investigates and studies the relationship between altruistic consumption motivations and altruistic consumption behaviors that aim for vulnerable groups. It is found that altruistic consumption behavior is mainly affected by benefit group motivation, benefit morality motivation, benefit (...) demander motivation, and benefit supplier motivation. There is a correspondence between the four altruistic consumption motivations and the four altruistic consumption behaviors. The strength of altruistic consumption motivations changes with changes in altruistic buying behavior. The strength of benefit group motivation decreases with the increase in the times of altruistic purchases, while the strength of benefit morality motivation, benefit demander motivation, and benefit supplier motivation increase with the increase in the times of altruistic purchases. Among the four kinds of altruistic consumption motivations that affect the times of altruistic purchases, the benefit demander motivation has a relatively greater influence. The results of this study have important guiding significance for vulnerable groups to formulating targeted proactive marketing strategies, preventing the altruistic consumption relationship dissolution, and realizing sustainable altruistic consumption. (shrink)

This article explores the activities of the Adult Shelter of the National Committee of the City of Zagreb since its foundation, from 1953 to 1978. The focus is on the consideration of the policy of taking care of vulnerable groups in social welfare institutions in the city of Zagreb, including persons with mental disorders. It seeks to illuminate the beginnings of the long-term care of the latter population in the homes for mentally ill adults, today known as homes (...) for adults. In connection to this, their social stigmatisation and tendency of placement into spatially segregated objects are discussed. The research showed that the strategies of social protection and mental health protection, despite the then-advocated idea of equality between social categories, were at the time oriented towards the protection of the majority of community from persons with mental disorders. (shrink)

Vulnerability is a broad concept widely addressed in recent scholarly literature. Lesbian, gay, bisexual, and transgender people are among the vulnerable populations with significant disadvantages related to health and the social determinants of health. Medical ethics discourse tackles vulnerability from philosophical and political perspectives. LGBT people experience several disadvantages from both perspectives. This article aims to justify the right to health for LGBT people and their particular claims regarding healthcare because they belong to a vulnerable group. Rawls’ theory (...) of justice and Norman Daniels’ normal functioning approach will be discussed in this context. Despite the fact that the right to health can be justified by Daniels’ normal functioning approach, there is still a theoretical gap in justifying the right to health for particular vulnerable populations such as LGBT peopleand discussing society’s duty to compensate for these disadvantages. In search of solid theoretical grounds for the justification of the right to health for LGBT people, the present author takes the opportunity to utilize Daniels’ flexible definition of normal functioning to show that normal functioning not only varies by age but also by different states of human existence, including sexual orientation and gender identity, and to propose replacing the life span approach with normal states of human existence. (shrink)

Background: Debates over legalisation of physician-assisted suicide or euthanasia often warn of a “slippery slope”, predicting abuse of people in vulnerable groups. To assess this concern, the authors examined data from Oregon and the Netherlands, the two principal jurisdictions in which physician-assisted dying is legal and data have been collected over a substantial period.Methods: The data from Oregon comprised all annual and cumulative Department of Human Services reports 1998–2006 and three independent studies; the data from the Netherlands comprised (...) all four government-commissioned nationwide studies of end-of-life decision making and specialised studies. Evidence of any disproportionate impact on 10 groups of potentially vulnerable patients was sought.Results: Rates of assisted dying in Oregon and in the Netherlands showed no evidence of heightened risk for the elderly, women, the uninsured , people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations. The only group with a heightened risk was people with AIDS. While extralegal cases were not the focus of this study, none have been uncovered in Oregon; among extralegal cases in the Netherlands, there was no evidence of higher rates in vulnerable groups.Conclusions: Where assisted dying is already legal, there is no current evidence for the claim that legalised PAS or euthanasia will have disproportionate impact on patients in vulnerable groups. Those who received physician-assisted dying in the jurisdictions studied appeared to enjoy comparative social, economic, educational, professional and other privileges. (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)

Battin et al examined data on deaths from physician-assisted suicide in Oregon and on PAS and voluntary euthanasia in The Netherlands. This paper reviews the methodology used in their examination and questions the conclusions drawn from it—namely, that there is for the most part ‘no evidence of heightened risk’ to vulnerable people from the legalisation of PAS or VE. This critique focuses on the evidence about PAS in Oregon. It suggests that vulnerability to PAS cannot be categorised simply by (...) reference to race, gender or other socioeconomic status and that the impetus to seek PAS derives from factors, including emotional state, reactions to loss, personality type and situation and possibly to PAS contagion, all factors that apply across the social spectrum. It also argues, on the basis of official reports from the Oregon Health Department on the working of the Oregon Death with Dignity Act since 2008, that, contrary to the conclusions drawn by Battin et al, the highest resort to PAS in Oregon is among the elderly and, on the basis of research published since Battin et al reported, that there is reason to believe that some terminally ill patients in Oregon are taking their own lives with lethal drugs supplied by doctors despite having had depression at the time when they were assessed and cleared for PAS. (shrink)

This article discusses which barriers hamper access to, and participation in, cultural life for members of vulnerable groups, in particular persons belonging to old and new minorities and persons with disabilities in the context of digitization. It then examines what role public authorities can play in addressing and dismantling these barriers. The article adopts a bottom-up approach, in that it is based on a qualitative study, which gives voice to vulnerable groups. The qualitative research involved interviews (...) with different organisations representing, or working with, vulnerable groups in 12 European Union Member States (Belgium, Croatia, Denmark, Estonia, Finland, France, Germany, Hungary, Ireland, Italy, Malta and Spain). In that regard, the article approaches vulnerability from a distinct conceptual standpoint, identifying vulnerability as a condition caused by structural barriers. On the whole, the article shows that, while digitization of cultural content, goods and services, offers increased opportunities for culture to be democratised and for its consumption by wider and more varied audiences to be enhanced, it also engenders structural barriers and creates additional challenges. Furthermore, while digitisation has ensured more diverse representation in cultural content, vulnerable groups still face stereotypical and negative portrayals within mainstream cultural content. The thematic analysis of the qualitative interviews also captures different dimensions of access to digital cultural and supports the identification of effective policy measures to bridge the ‘digital divide’ and assist in the fulfilment of cultural rights of vulnerable groups. (shrink)

It is rare to find honest accounts of the difficulties and dilemmas encountered when conducting sensitive research with vulnerable research populations. This account explores some of the ethical issues raised by a qualitative interview study with lesbians and gay men about their experiences of nursing care. There is tension between the moral duty to conduct research with vulnerable and stigmatized groups in order to improve care, and the inevitable lack of resources that go with such a venture. (...) This increases the risk of harm during the process of research. The risk of harm to both the researchers and the researched is explored and the need for a support structure for both groups is raised. There is a pressing need to develop further understanding about the ways in which the dissemination of research can potentially harm already vulnerable research populations. (shrink)

People in extraordinary situations are vulnerable. As research participants, they are additionally threatened by abuse or exploitation and the possibility of harm through research. To protect people against these threats, informed consent as an instrument of self-determination has been introduced. Self-determination requires autonomous persons, who voluntarily make decisions based on their values and morals. However, in nursing research, this requirement cannot always be met. Advanced age, chronic illness, co-morbidity and frailty are reasons for dependencies. These in turn lead to (...) limited abilities or opportunities for decision-making and self-determination. Exclusion of vulnerable people from research projects would disadvantage them by not covering their needs, which would violate the ethical principles of justice and beneficence. Commonly, vulnerability is attributed to social groups. The consequence for individuals, attributed as belonging to such a vulnerable group, is that the principles of respect for autonomy, justice and beneficence are subordinated to the principle of non-maleficence, understood as avoiding the risk to cause more harm than good. In addition, group-specific attribution could lead to stigmatizing because labelling a person as deviation from a norm violates integrity. For clinical nursing research, the question arises how the protection of vulnerable people could be granted without compromising ethical principles. The concept of relational ethics provides a possible approach. It defines vulnerability as the relation between a person’s health status and the extent to which this person is dependent on the researcher and the research context. Vulnerability is not attributed solely to a person but to a situation, meaning the person is viewed in context. By combining vulnerability as a context-related and situational concept with existing approaches of informed consent, the different ethical principles can be balanced and preserved at every step of the research process. (shrink)

There is a growing resurgence in the study of psychedelic medicines for the treatment of mental health and substance use disorders. However, certain early investigations are marred by questionable research methods, abuses against research participants, and covert Central Intelligence Agency financial involvement. The purpose of this study was to understand how and to what extent people of colour and other vulnerable populations, specifically, individuals who were incarcerated or incapacitated due to mental health issues, were exploited during the first wave (...) of psychedelic research in the USA. To do so, we reviewed available empirical publications according to current ethical standards. Variables of interest included race and ethnicity of participants, population vulnerability, drug administration conditions, informed consent and undue influence. Our findings draw attention to the history of research abuses against people of colour in Western psychedelic research. In light of these findings, we urge a call-to-action to current psychedelic researchers to prioritise culturally inclusive and socially responsible research methods in current and future studies. All data relevant to the study are included in the article. (shrink)

This article discusses the prioritization of scarce and in-demand influenza vaccines during a pandemic. The mass vaccination campaign in Canada against H1N1 influenza in 2009 illustrated that some groups considered vulnerable may also be stigmatized. In 2009, prisoners and people with severe obesity were given priority of H1N1 vaccination in some Canadian jurisdictions. Assigning priority for vaccination to such groups may be socially unpopular. This article examines a number of possible arguments that might motivate opposition to prioritizing (...) stigmatized groups. We find these arguments flawed. They rely on a suspect ‘social worth’ rationale for the prioritization of scarce resources. Furthermore, human rights concerns support the prioritization of vulnerable but stigmatized groups for vaccination during a pandemic. We also argue that it is necessary to prioritize vulnerable but stigmatized groups to promote the common good in its various forms. The article concludes with an analysis of an objection that no vulnerable groups—stigmatized or otherwise—should be given priority for influenza vaccination in a pandemic. We argue that the objection is based on a confusion. (shrink)

In this paper I argue for a cautious multicultural approach, with specific regard to its implementation as a legal strategy. Such an approach is cautious only because, as I will demonstrate, it stems from an awareness that in some cases, and for different reasons (political, social, as well as legal), other multicultural policies based on minority or group rights do not work. In other words, I will argue for a strategy of recognition that is additional to others, and that can (...) be implemented and juxtaposed with others, in order to offer a better defence of those rights and claims, which other policies do not recognise (or recognise insufficiently). (shrink)

Regarding the determination of vulnerability, the bioethics community has univocally jettisoned “labelled groups”, groups whose membership confers a context-invariant “vulnerable” status to their members. While the usual reasons against the sole use of labelled groups to determine the vulnerability of individuals are sound, labelled groups as exemplars of vulnerability can play indispensable roles in bioethical reasoning. In this article, I argue against the wholesale jettisoning of labelled groups by showing how they can be useful.

The notion of vulnerable groups has gained relevance in international legal instruments while being criticised in philosophical literature for its disabling potential and disempowering consequences. The article argues that the category of group vulnerability should not be abandoned, being an opportunity for resistance, visibility, and a place for dissent: vulnerable groups can both function as a sounding board for claims and make demands for recognition, resetting the political agenda and the topics of public debate, and allow (...) the level of collective needs to emerge from the level of individual interests, thereby guaranteeing a fairer distribution of resources. For this purpose, the article provides two definitions of group vulnerability that avoid both the risks of essentialism and of labelling outcomes. The article also analyses the political value of vulnerable groups, highlighting that it is conceivable as an enabling condition, a source of political agency and mobilisation. (shrink)

Orphans and vulnerable children fall under the category of children who are at risk of exposure to more stressful circumstances and receive less social assistance compared to other children. This study aims to investigate the impact of group counseling based on social intervention and psychological therapy on social support and the perceived stress growth of orphans and vulnerable children. In one special educational needs school in Nanning, China, the SSGPC was developed and implemented. Using the social support and (...) post-stress growth scales, the researchers investigated the effects of SSGPC on orphans and vulnerable children. Twenty-seven orphans and vulnerable children between the ages of nine and 12 were arbitrarily assigned to the experimental and control groups. A pre-test post-test method of quasi-experimental design was applied, with 13 participants in the experimental group and 14 in the control group. The results revealed that the intervention group had significantly higher scores for social support and post-stress growth than the control group. The SSGPC had significantly improved the levels of social support for orphans. The findings indicated that the SSGPC provided an effective way to improve social support and post-stress growth of orphans and vulnerable children. (shrink)

Several foundational documents of bioethics mention the special obligation researchers have to vulnerable research participants. However, the treatment of vulnerability offered by these documents often relies on enumeration of vulnerable groups rather than an analysis of the features that make such groups vulnerable. Recent attempts in the scholarly literature to lend philosophical weight to the concept of vulnerability are offered by Luna and Hurst. Luna suggests that vulnerability is irreducibly contextual and that Institutional Review Boards (...) (Research Ethics Committees) can only identify vulnerable participants by carefully examining the details of the proposed research. Hurst, in contrast, defines the vulnerable as those especially at risk of incurring the wrongs to which all research ethics participants are exposed. We offer a more substantive conception of vulnerability than Luna but one that gives rise to a different rubric of responsibilities from Hurst's. While we understand vulnerability to be an ontological condition of human existence, in the context of research ethics, we take the vulnerable to be research subjects who are especially prone to harm or exploitation. Our analysis rests on developing a typology of sources of vulnerability and showing how distinct sources generate distinct obligations on the part of the researcher. Our account emphasizes that the researcher's first obligation is not to make the research participant even more vulnerable than they already are. To illustrate our framework, we consider two cases: that of a vulnerable population involved in international research and that of a domestic population of people with diminished capacity. (shrink)

An issue about the privacy of the clustered groups designed by algorithms arises when attempts are made to access certain pieces of information about those groups that would likely be used to harm them. Therefore, limitations must be imposed regarding accessing such information about clustered groups. In the discourse on group privacy, it is argued that the right to privacy of such groups should be recognised to respect group privacy, protecting clustered groups against discrimination. According (...) to this viewpoint, this right places a duty on others, for example, private companies, institutions, and governments, to refrain from accessing such information. To defend the idea that the right to privacy should be recognised for clustered groups, at least two requirements must be satisfied. First, clustered group privacy must be conceived of as either a collective good or a participatory good. Since these forms of good are of the type from which no member of a group can be excluded from benefiting, the right to them is defined as a group right. Second, there must be group interests on which to base a group right. Group interests can be either the interests of those members that are a result of their being in the group or the interests of the group as a whole that transcend the interests of its members. However, this paper argues that clustered group privacy cannot be conceived of as either a collective or a participatory good because it is possible for some individuals to be excluded from benefiting from it. Furthermore, due to the lack of awareness among individuals that they are members of a clustered group and the nature of a clustered group itself, such groups cannot have the group interests necessary to establish a group right. Hence, the group right to privacy cannot be recognised for these groups, implying that the group right cannot be considered a means to protect clustered groups against discrimination. Instead, this paper suggests that moral principles need to be articulated within an ethics of vulnerability to identify the moral obligations of protecting vulnerable clustered groups. The duty owed to the vulnerable should involve refraining from accessing certain information about clustered groups in specific contexts. This duty is not engendered by the right to privacy of such groups; it is the duty owed to the vulnerable. The findings highlight the need to articulate moral principles regarding privacy and data protection to protect clustered groups in contexts in which accessing information about them could constitute a reason for discriminatory targeting. (shrink)

Throughout the pandemic, the media and scholars have widely discussed increasing social inequality and thereby publicly pointed to often hidden and neglected forms of inequality. However, the “newly” arisen awareness has not yet been put into action to reduce this inequality. Dealing with social inequality implies exploring and confronting social privileges, which are often seen as the other side of inequality. These social constructs, inequality and privilege, are often discussed in light of vulnerability and resilience. This is particularly important in (...) the context of the worldwide coronavirus disease 2019 pandemic and efforts to end the pandemic, as both constructs are discussed regarding access to healthcare, vaccination, and education and knowledge, misinformation, social resources, economic resources, and so forth. Minority and/or marginalized groups may be particularly vulnerable to the impact of the COVID-19 pandemic. However, resilience factors in these groups may be neglected and underreported. This narrative review aims at illustrating the specific and intertwined aspects of resilience and vulnerability in minority and/or marginalized groups during the COVID-19 pandemic. To achieve this, we use an intersectional lens based on recommendations made by Moradi and Grzanka. A total of 48 articles were included in the narrative review. Most of them were commentaries focusing on social inequality, vulnerability, and/or resilience. Based on the dissection of articles at structural, systemic, and individual levels, we propose three hypothesis on vulnerability and resilience in minority and marginalized individuals and groups: social inequality must be considered at a global level; inequality at a global level translates into a vulnerable context for an individual; vulnerability is historically situated: vulnerability is maintained and reinforced by history; strength through collective hardship: vulnerability is not the opposite of resilience but may serve as an aspect of resilience. The conclusions drawn from this review show that we need to include diverse voices to advance concepts, such as vulnerability and resilience, in minority and marginalized groups. Additionally, these concepts are not necessarily in opposition to each other, but vulnerability should be understood as an integral part of resilience. (shrink)

Subpart B of 45 Code of Federal Regulations Part 46 (CFR) identifies the criteria according to which research involving pregnant women, human fetuses, and neonates can be conducted ethically in the United States. As such, pregnant women and fetuses fall into a category requiring “additional protections,” often referred to as “vulnerable populations.” The CFR does not define vulnerability, but merely gives examples of vulnerable groups by pointing to different categories of potential research subjects needing additional protections. In (...) this paper, I assess critically the role of this categorization of pregnant women involved in research as “vulnerable,” both as separate entities and in combination with the fetuses they carry. In particular, I do three things: (1) demonstrate that pregnant women qua pregnancy are either not “vulnerable” according to any meaningful definition of that term or that such vulnerability is irrelevant to her status as a research participant; (2) argue that while a fetus may be vulnerable in terms of dependency, this categorization does not equate to the vulnerability of the pregnant woman; and (3) suggest that any vulnerability that appends to women is precisely the result of federal regulations and dubious public perceptions about pregnant women. I conclude by demonstrating how this erroneous characterization of pregnant women as “vulnerable” and its associated protections have not only impeded vital research for pregnant women and their fetuses, but have also negatively affected the inclusion of all women in clinical research. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 14.4 (2004) 411-425 [Access article in PDF] Vulnerability, Vulnerable Populations, and Policy Mary C. Ruof "Special justification is required for inviting vulnerable individuals to serve as research subjects and, if they are selected, the means of protecting their rights and welfare must be strictly applied."Guideline 13: Research Involving Vulnerable Persons International Ethical Guidelines for Biomedical Research Involving Human Subjects Council for (...) International Organizations of Medical Sciences (CIOMS) and World Health Organization (WHO) Geneva, Switzerland, 2002 Within medical research and healthcare certain groups are afforded special protections and services because of their designation as vulnerable. The vulnerable require special justification to participate in human subject research in order to eliminate potential human rights abuses. The Nuremberg Code of 1947 was written in response to the extreme human subject abuses that occurred under the Nazi regime, and, although the intent of the 1947 Code was to protect human rights, rigid voluntary consent requirements deprived some individuals of the right to participate in clinical trials. Recent human research guidelines, such as the CIOMS/WHO guidelines referenced above and the guidelines referenced in Section V of this Scope Note, attempt to balance both protection from abuse in research and access to new, experimental treatments for the vulnerable.Although various protective guidelines stipulate special protections for vulnerable populations, the concept of vulnerability and consequently the criteria designating vulnerable populations remain vague. Precisely who are the vulnerable? The word "vulnerability" stems from the Latin vulnerare, "to wound." (Oxford Encyclopedic English Dictionary 1995). In clinical research, the term [End Page 411] vulnerable generally is applied to individuals who are unable to give informed consent or who are susceptible to coercion. The Common Rule (45 CFR 46, Subpart A) includes as vulnerable research subjects: children, prisoners, pregnant women, and persons who are handicapped, mentally disabled, economically disadvantaged, or educationally disadvantaged. Although the Common Rule specifies certain vulnerable categories, the guidelines were not intended to be exclusive, leaving open the interpretation of vulnerability.In medical research and health policy, vulnerability is an abstract concept that has concrete effects both for those labeled vulnerable and for those not. Clinical researchers, healthcare workers, ethical reviewers, and policymakers must be able to identify vulnerable subjects to establish how healthcare resources will be allocated and who will qualify for special protections and socialized benefits. Attempts to quantify vulnerability in clear, measurable ways have met little if any consensus. As Alexander Morawa (II, 2003, p. 150) states, "There is no single approach to definition of vulnerability. In fact, there is no purposeful categorisation at all."Difficulties in defining vulnerability have prompted discourse surrounding its utility as a qualifying factor in the allocation of health resources and its appropriateness as a guiding principle in bioethics. Some of the authors cited in this Scope Note argue against the labeling and categorization of vulnerable individuals and populations. "Labeling individuals as 'vulnerable' risks viewing vulnerable individuals as 'others' worthy of pity, a view rarely appreciated" (III, Danis and Patrick 2002, p. 320). The categories of vulnerable groups listed under the Common Rule have been the source of controversy, "for example, many find the suggestion that pregnant women are vulnerable to be quite sexist" (IV, DeBruin 2001, p. 7). Instead of creating categories of vulnerable populations, would it not be better to derive an account of just treatment from a just social policy at large that encompasses human vulnerabilities (II, Brock 2002, p. 283).For some of the authors listed here, the concept of vulnerability is essential to bioethics. Robert Goodin (I, 1985, p. 107) writes that the vulnerability of other human beings is the source of our special responsibilities to them. In contrast to the four American principles of biomedical ethics—autonomy, nonmaleficence, beneficence, and justice—the four principles of European bioethics and biolaw include vulnerability along with autonomy, dignity, and integrity. According to, Jacob Dahl Rendtorff and Peter Kemp (I, 2000, p. 274) "the principle of vulnerability is ontologically prior to the other [European] principles, it expresses better than all of the other ethical principles... the finitude of the human condition."Some of the... (shrink)

This article examines the implicit promises of fairness in evidence based medicine , namely to avoid discrimination through objective processes, and to distribute effective treatments fairly. The relationship between EBM and vulnerable groups is examined. Several aspects of EBM are explored: the way evidence is created , and the way evidence is applied in clinical care and health policy. This analysis suggests that EBM turns our attention away from social and cultural factors that influence health and focuses on (...) a narrow biomedical and individualistic model of health. Those with the greatest burden of ill health are left disenfranchised, as there is little research that is relevant to them, there is poor access to treatments, and attention is diverted away from activities that might have a much greater impact on their health. (shrink)

Conceptualisations of vulnerability of research participants in the international standards of ethics of research involving humans underwent a shift from a group-membership (categorical) to an individual-oriented (analytic) approach to vulnerability. However, the categorical view has not been jettisoned completely, and so its role needs to be examined or explained. It is argued in this chapter that a restricted use of the categorical approach can be justified if protection of vulnerable research participants is seen against the background of the dynamics (...) of study design, review and implementation, and if recognition and protection of participants with vulnerabilities is construed as a process in which researchers and ethics review bodies are involved rather than as a labelling device. From this perspective, the suitability of approach to conceptualisation of vulnerability depends on the kind and scope of the available information on participants. The process of study design, ethics review, and implementation involves different users of the ethics standards at different stages in the lifetime of a project: researchers and members of ethics review bodies. The concepts of individual vulnerability (in the analytic approach) and that of group-membership vulnerability (in the categorical approach) can play their protective roles complementarily in the process of identification of vulnerabilities of participants and protection of participants with vulnerabilities. (shrink)

Les populations vulnérables connaissent souvent des besoins complexes qui exigent de multiples interventions. Pour aider ces populations de façon effective, et de façon efficace du point de vue de l’État, beaucoup de pays visent à réaliser une meilleure intégration des services sociaux. Ce chapitre examine les enjeux liés à une telle intégration.

In conceptualizing vulnerability, it is common for researchers to assume that some participants are more vulnerable on the basis of their membership of a particular group or because they exhibit particular characteristics. Older people are often viewed as inherently more vulnerable by ethics committees and the ethical guidelines committees construct. Because age alone does not confer or cause vulnerability, risk of harm to older research participants is not purely associated with their intrinsic connection to a vulnerable group, (...) and classifying older research participants as vulnerable may not necessarily protect them from harm. Drawing on the preliminary findings of a qualitative study of older people who had survived a suicide attempt, we reflect on how the specific context of our study had the potential of framing older people as vulnerable, and describe ways in which these were managed and resolved. Specifically, we discuss potential for harm through the ethical principles of coercion and distress. (shrink)

What makes individuals, groups, or even entire countries vulnerable? And why is vulnerability a concern in bioethics? A simple answer to both questions is that vulnerable individuals and groups are subject to exploitation, and exploitation is morally wrong. This analysis is limited to two areas. First is the context of multinational research, in which vulnerable people can be exploited even if they are not harmed, and harmed even if they are not exploited. Second is the (...) situation of women, who are made vulnerable in cultural settings or in entire countries in which they are oppressed and powerless. (edited). (shrink)

Open access. This open-access book discusses vulnerability and the protection-inclusion dilemma of including those who suffer from serious poverty, severe stigma, and structural violence in research. Co-written with representatives from indigenous peoples in South Africa and sex workers in Nairobi, the authors come down firmly on the side of inclusion. In the spirit of leaving no one behind in research, the team experimented with data collection methods that prioritize research participant needs over researcher needs. This involved foregoing the collection of (...) personal data and community researchers being involved in all stages of the research. In the process, the term ‘vulnerability’ was illuminated across significant language barriers as it was defined by indigenous peoples and sex workers themselves. The book describes a potential alternative to exclusion from research that moves away from traditional research methods. By ensuring that the research is led by vulnerable groups for vulnerable groups, it offers an approach that fosters trust and collaboration with benefits for the community researchers, the wider community as well as research academics. Those living in low-income settings, in dire situations that are summarized with the term ‘vulnerability’ know best what their problems are and which priorities they have. To exclude them from research for their own protection is a patronizing approach which insinuates that researchers and research ethics committees know best. The team from this book have shown that minimally risky and minimally burdensome research tailored towards the needs of highly marginalized and stigmatized communities can be scientifically valuable as well as inclusive and equitable. I congratulate them. Prof. Klaus Leisinger, President Global Values Alliance, Former personal advisor to Kofi Annan on corporate responsibility. (shrink)

Social policy is based, since its inception, on a certain “philosophy” regarding the desirable social model, encompassing religious, political and social values, as well as appropriate objectives and tools for protecting vulnerable target groups. This philosophy differs both geographically and historically. Thus, European social policies have a specific axiological foundation comparing to social models developed on other continents. Even if relatively stable, this foundation is continuously redefined and, therefore, the European social model is an evolving concept. Our paper (...) analyses how social vulnerability and vulnerable groups are redefined within the European social policies, during Covid-19 pandemic. If in recent decades the European social policies have tried to implement more selective and means-tested social protection, the approach to social protection during the pandemic is different, there are indications of increasing the universalisation of social benefits for covering new vulnerabilities. In our analysis, the pandemic accentuated some pre-existing trends to redefine the predilect target groups and their social protection: larger decommodification, protection for atypical employment, social security schemes covering new risks, and instruments for a new work-life balance. At the same time, European social protection policies tend towards synergy with actions in the fields of digitalisation and ecology. Are these changes temporary or will they last even after the pandemic? Of course, it is difficult to make predictions, but we believe that some of them anticipate possible structural reforms of more humane, less biopolitical European social protection policies. Our analysis is based on data from social statistics, official documents and public speeches. (shrink)

Introduction: Vulnerability is a poorly understood concept in research ethics, often aligned to autonomy and consent. A recent addition to the literature represents a taxonomy of vulnerability developed by Kipnis, but this refers to the conduct of clinical trials rather than qualitative research, which may raise different issues. Aim: To examine issues of vulnerability in cancer and palliative care research obtained through qualitative interviews. Method: Secondary analysis of qualitative data from 26 black Caribbean and 19 white British patients with advanced (...) cancer. Results: Four domains of vulnerability derived from Kipnis’s taxonomy were identified and included: (i) communicative vulnerability, represented by participants impaired in their ability to communicate because of distressing symptoms; (ii) institutional vulnerability, which referred to participants who existed under the authority of others—for example, in hospital; (iii) deferential vulnerability, which included participants who were subject to the informal authority or the independent interests of others; (iv) medical vulnerability, which referred to participants with distressing medical conditions; and (v) social vulnerability, which included participants considered to belong to an undervalued social group. Participants from both ethnic groups populated all these domains, but those who were black Caribbean were more present among the socially vulnerable. Conclusions: Current classifications of vulnerability require reinterpretation when applied to qualitative research at the end of life. We recommend that researchers and research ethics committees reconceptualise vulnerability using the domains identified in this study and consider the research context and interviewers’ skills. (shrink)

BackgroundCarefully planned research is critical to developing policies and interventions that counter physical, psychological and social challenges faced by young people living with HIV/aids, without increasing burdens. Such studies, however, must navigate a ‘vulnerability paradox’, since including potentially vulnerable groups also risks unintentionally worsening their situation. Through embedded social science research, linked to a cohort study involving Adolescents Living with HIV/aids (ALH) in Kenya, we develop an account of researchers’ responsibilities towards young people, incorporating concepts of vulnerability, resilience, (...) and agency as ‘interacting layers’.MethodsUsing a qualitative, iterative approach across three linked data collection phases including interviews, group discussions, observations and a participatory workshop, we explored stakeholders’ perspectives on vulnerability and resilience of young people living with HIV/aids, in relation to home and community, school, health care and health research participation. A total of 62 policy, provider, research, and community-based stakeholders were involved, including 27 ALH participating in a longitudinal cohort study. Data analysis drew on a Framework Analysis approach; ethical analysis adapts Luna’s layered account of vulnerability.ResultsALH experienced forms of vulnerability and resilience in their daily lives in which socioeconomic context, institutional policies, organisational systems and interpersonal relations were key, interrelated influences. Anticipated and experienced forms of stigma and discrimination in schools, health clinics and communities were linked to actions undermining ART adherence, worsening physical and mental health, and poor educational outcomes, indicating cascading forms of vulnerability, resulting in worsened vulnerabilities. Positive inputs within and across sectors could build resilience, improve outcomes, and support positive research experiences.ConclusionsThe most serious forms of vulnerability faced by ALH in the cohort study were related to structural, inter-sectoral influences, unrelated to study participation and underscored by constraints to their agency. Vulnerabilities, including cascading forms, were potentially responsive to policy-based and interpersonal actions. Stakeholder engagement supported cohort design and implementation, building privacy, stakeholder understanding, interpersonal relations and ancillary care policies. Structural forms of vulnerability underscore researchers’ responsibilities to work within multi-sectoral partnerships to plan and implement studies involving ALH, share findings in a timely way and contribute to policies addressing known causes of vulnerabilities. (shrink)

Solidarity between more and less vulnerable groups is fundamental to an effective public health response to a global pandemic. Yet in the case of COVID-19, a focus on deciding who can and who cannot be protected from harm has shaped the pandemic experience and continues to determine the post-pandemic trajectory of life with SARS-CoV-2. In this paper I discuss how this has affected our understanding and acceptance of solidarity.

The concept of vulnerability is widely used in research ethics to signal attention to participants who require special protections in research. However, this concept is vague and under‐theorized. There is also growing concern that the dominant categorical approach to vulnerability (as exemplified by research ethics regulations and guidelines delineating vulnerable groups) is ethically problematic because of its assumptions about groups of people and is, in fact, not very guiding. An agreed‐upon strategy is to move from categorical towards (...) analytical approaches (focused on analyzing types and sources of vulnerability) to vulnerability. Beyond this agreement, however, scholars have been advancing competing accounts of vulnerability without consensus about its appropriate operationalization in research ethics. Based on previous debates, we propose that a comprehensive account of vulnerability for research ethics must include four components: definition, normative justifications, application, and implications. Concluding that no existing accounts integrate these components in a functional (i.e., practically applicable) manner, we propose an integrative and functional account of vulnerability inspired by pragmatist theory and enriched by bioethics literature. Using an example of research on deep brain stimulation for treatment‐resistant depression, we illustrate how the integrative‐functional account can guide the analysis of vulnerability in research within a pragmatist, evidence‐based approach to research ethics. While ultimately there are concerns to be addressed in existing research ethics guidelines on vulnerability, the integrative‐functional account can serve as an analytic tool to help researchers, research ethics boards, and other relevant actors fill in the gaps in the current landscape of research ethics governance. (shrink)

- First book to describe what pain means in vulnerable or special groups of people - Clinical applications described in each chapter - Provides insight into the nature of pain experience across the lifespan -/- This book, the third and final volume in the Meaning of Pain series, describes what pain means to people with pain in “vulnerable” groups, and how meaning changes pain – and them – over time. -/- Immediate pain warns of harm or (...) injury to the person with pain. If pain persists over time, more complex meanings can become interwoven with this primitive meaning of threat. These cognitive meanings include thoughts and anxiety about the adverse consequences of pain. Such meanings can nourish existential sufferings, which are more about the person than the pain, such as loss, loneliness, or despair. -/- Although chronic pain can affect anyone, there are some groups of people for whom particular clinical support and understanding is urgently needed. This applies to “vulnerable” or “special” groups of people, and to the question of what pain means to them. These groups include children, women, older adults, veterans, addicts, people with mental health problems, homeless people, or people in rural or indigenous communities. Several chapters in the book focus on the lived experience of pain in vulnerable adults, including black older adults in the US, rural Nigerians, US veterans, and adults with acquired brain injury. The question of what pain experience could mean in the defenceless fetus, neonate, pre-term baby, and child, is examined in depth across three contributions. -/- This book series aspires to create a vocabulary on the “meanings of pain” and a clinical framework with which to use it. It is hoped that the series stimulates self-reflection about the role of meaning in optimal pain management. -/- Meanings of Pain is intended for people with pain, family members or caregivers of people with pain, clinicians, researchers, advocates, and policy makers. Volume I was published in 2016; Volume II in 2019. (shrink)

Legislation for dementia care needs to be continually rethought, if the rights of older persons and other persons with dementia are to be addressed properly. We propose a theoretical framework for understanding vulnerability and dependency, which enables us to problematize the currently prevailing legal conception of adults as always able — irrespective of health or age — to act autonomously in their everyday lives. Such an approach gives rise to difficult dilemmas when persons with dementia are forced to make decisions (...) on their own about basic living conditions, such as housing and care, without decision-making support. In Sweden, for example, such matters are frequently left to the person him- or herself to decide, often without any assistance from social workers, and with family members serving as caregivers of last resort.Using vulnerability theory as the framework for our discussion, we argue that policymakers should not apply a group-oriented approach (based on factors like age, legal status, or mental capacity) to persons suffering from dementia. The needs of such individuals are as complex and varied as they themselves are. We discuss our findings from an interdisciplinary (law/social work) research project in which we examine the dilemma that social workers face when they are required, under the terms of the Swedish Social Services Act, to determine whether persons with dementia are to be granted support.We argue further that a cross-disciplinary approach — in which vulnerability theory furnishes the framework — opens up for new ways of understanding and developing social welfare law and practice. This, we believe, can help us better address the rights, interests, and needs of people with dementia, of their families, and of professionals in the social welfare system. Finally, many of the problems faced by ageing societies in general can be understood on the basis of such an approach. (shrink)

Background Mental healthcare users and patients were described as a particularly vulnerable group in the debate on the burdens of the COVID-19 pandemic. Just what this means and what normative conclusions can be derived from it depend to a large extent on the underlying concept of vulnerability. While a traditional understanding locates vulnerability in the characteristics of social groups, a situational and dynamic approach considers how social structures produce vulnerable social positions. The situation of users and patients (...) in different psychosocial settings during the COVID-19 pandemic has not yet been comprehensively considered and ethically analyzed under the aspect of situational vulnerability. Methods We present the results of a retrospective qualitative analysis of a survey of ethical challenges in different mental healthcare facilities of a large regional mental healthcare provider in Germany. We evaluate them ethically using a dynamic and situational understanding of vulnerability. Results Difficulties in implementing infection prevention measures, restrictions of mental health services in favor of infection prevention, social isolation, negative health effects on mental healthcare users and patients, and challenges in implementing regulations on state and provider levels within the local specificities emerged across different mental healthcare settings as ethically salient topics. Conclusions Applying a situational and dynamic understanding of vulnerability allows the identification of specific factors and conditions that have contributed to an increased context-dependent vulnerability for mental healthcare users and patients. These factors and conditions should be considered on the level of state and local regulations to reduce and address vulnerability. (shrink)

Vulnerability theory as developed in the Vulnerability and Human Condition Initiative is an alternative to a rights-based or social contract paradigm for thinking about foundation concepts of state responsibility. One fundamental premise of the theory is that the individuals and groups currently described as “vulnerable populations” should not be labelled vulnerable, nor should they be sequestered in discreet categories for the purposes of law and policy. This plea for their inclusion in a larger whole is not to (...) deny that discrimination, harm, and relative disadvantage arising from all sorts of circumstances and situations exist. Nor is it to suggest that particular instances of harm should not be addressed by appropriate state action. Rather, it is an argument that “vulnerability” is the wrong concept to use to define and isolate these groups, or any other specific group, from the whole of humanity. Human vulnerability is universal and constant, inherent in the human condition. Recognizing the theoretical mandates of accepting the universal, vulnerability theory presents a “vulnerable subject” as the only appropriate object of law and policy. This inclusive, universal legal subject incorporates the realities of the ontological body and its life-long dependence on social institutions and relationships, building a theory of essential social cohesion and reciprocity in which the state has the responsibility to see that these vital social institutions and relationships operate justly. (shrink)

This paper advances a new criterion of a vulnerable population in research. According to this criterion, there are consent-based and fairness-based reasons for calling a group vulnerable. The criterion is then applied to the case of people with serious illnesses. It is argued that people with serious illnesses meet this criterion for reasons related to consent. Seriously ill people have a susceptibility to “enticing offers” that hold out the prospect of removing or alleviating illness, and this susceptibility reduces (...) their ability to safeguard their own interests. This explains the inclusion of people with serious illnesses in the Belmont Report’s list of populations needing special protections, and supports the claim that vulnerability is the rule, rather than the exception, in biomedical research. (shrink)

Vulnerability and resistance have often been seen as opposites, with the assumption that vulnerability requires protection and the strengthening of paternalistic power at the expense of collective resistance. Focusing on political movements and cultural practices in different global locations, including Turkey, Palestine, France, and the former Yugoslavia, the contributors to Vulnerability in Resistance articulate an understanding of the role of vulnerability in practices of resistance. They consider how vulnerability is constructed, invoked, and mobilized within neoliberal discourse, the politics of war, (...) resistance to authoritarian and securitarian power, in LGBTQI struggles, and in the resistance to occupation and colonial violence. The essays offer a feminist account of political agency by exploring occupy movements and street politics, informal groups at checkpoints and barricades, practices of self-defense, hunger strikes, transgressive enactments of solidarity and mourning, infrastructural mobilizations, and aesthetic and erotic interventions into public space that mobilize memory and expose forms of power. Pointing to possible strategies for a feminist politics of transversal engagements and suggesting a politics of bodily resistance that does not disavow forms of vulnerability, the contributors develop a new conception of embodiment and sociality within fields of contemporary power. -/- Contributors. Meltem Ahiska, Athena Athanasiou, Sarah Bracke, Judith Butler, Elsa Dorlin, Basak Ertür, Zeynep Gambetti, Rema Hammami, Marianne Hirsch, Elena Loizidou, Leticia Sabsay, Nükhet Sirman, Elena Tzelepis. (shrink)

By their very nature, overseas medical missions (and even domestic medical charities such as free clinics ) are designed to serve vulnerable populations. If these groups were capable of protecting their own interests, they would not need the help of medical volunteers: their medical needs would be met through existing government health programs or by utilizing their own resources. Medical volunteerism thus seems like an unfettered good: a charitable activity provided by well-meaning doctors and nurses who want to (...) give of their time, skills, and resources to help those who would not otherwise be able to take care of their medical needs. In this article, I argue that if medical volunteerism is to be good, however, it must always meet certain basic ethical requirements. These requirements may be (and perhaps often are) overlooked in the rush to organize and carry out short-term medical missions. I illustrate my point with special reference to short-term medical missions designed to provide surgical repair of obstetric vesico-vaginal fistula, a condition in which the tissues that normally separate the bladder from the vagina are destroyed by obstetric trauma, leading to continuous and unremitting incontinence in the affected woman. (shrink)

Pluralism and diversity are largely bound to a humancentric conception of difference, one which fails to consider the plurality of ontologies that constitute reality. The result has been the confinement of the subject of justice to social spaces, and hence the reinforcement of the dichotomous understanding of humanity and nature. This is in part because pluralist theories are largely concerned with one single manifestation of vulnerability: the vulnerability of minority groups. This essay begins by offering a distinctive definition of (...) vulnerability, one that is broad enough to incorporate both universal and dispositional accounts, while being narrow enough to rule out both vitalist and biocentric approaches. I use the notion to examine debates on political pluralism, and I argue that, as they currently stand, pluralist approaches are ill suited for understanding the struggles of Indigenous peoples against colonialism. I defend the view that the normative case for pluralism needs to be grounded in an ecologically aware ethics that can respond to the vulnerability of animate beings who sustain life. (shrink)

The conduct of prior ethics review of human research projects helps to protect vulnerable groups or populations from potential negative impacts of research. Contemporary considerations in human research considers the concept of vulnerability in terms of access to research opportunities, impacts on the consenting process, selection bias, and the generalisability of results. Recent work questions the validity of using enumerated lists as a check box approach to protect research participants from exploitation. Through the use of broad categories to (...) treat cohorts of human research participants as homogenous classes and label some participants as vulnerable merely because they are members of a particular class, some ethics reviewers have used the National Statement on Ethical Conduct in Human Research to strip individuals of their “ethical equality”. Labelling people as vulnerable does not help researchers or human research ethics committee members develop an understanding of the complexities of applying the principles of respect and of justice in ethical decision-making. Conversely, defining specific cohorts of research participants as needing nuanced ethical consideration, due to their vulnerable nature, may imply that other population groups need not be considered vulnerable. We contend that this assumption is erroneous. This paper explores the way that human research ethics guidance documents treat vulnerability within the Australian context and draws on contemporary discussion to focus an alternative perspective based on the principles in the National Statement on Ethical Conduct in Human Research for researchers and human research ethics committee members to consider. (shrink)

How can social institutions complicate and worsen vulnerabilities of particular individuals or groups? We begin by explicating how certain diagnoses within mental health and medicine operate as interactive kinds of labels and how such labels can create institutional barriers that hinder one's capacity to achieve wellbeing. Interactive-kind modeling is a conceptual tool that elucidates the ways in which labeling can signal to others how the labeled person ought to be treated, how such labeling comes about and is perceived, and (...) how it compounds vulnerabilities. We argue that this shift in standpoint helps us recognize and mitigate compounded vulnerabilities. (shrink)