The concept of vulnerability has been introduced in the bioethical debate recently. In philosophy, vulnerability has been a core notion particularly in Continental schools. In a sense every human being is vulnerable. In bioethics the concept has been introduced initially in the context of clinical research to demarcate groups of individuals or populations as ‘vulnerable’ and therefore entitled to special protections. With the globalization of bioethics, suffering and risk in the face of medical research, technologies and care have become global realities, so that the concept of vulnerability has emerged as one of the principles of global bioethics, for example in the UNESCO Declaration on Bioethics and Human Rights. The principle of vulnerability is especially salient in the context of global disasters. It points the ethical discourse in specific directions that focus more on ameliorating the conditions that produce vulnerability, rather than on emergency actions focused on saving lives. In this connection, the human rights discourse might be helpful to focus attention and actions in connection to disasters. This discourse can complement the dominant ethical framework of humanitarianism in disaster prevention, relief, and recovery. Both ethical discourses are strongly connected with the notion of vulnerability. Human rights language presents the sufferers of disasters as bearers of rights rather than as victims. It also focuses attention at structural violence, economic injustice and global solidarity. However, this requires a critical reformulation of human rights discourse, since it often adopts a neoliberal approach. It assumes that globalization offers opportunities to strengthen human security and provide basic needs, rather than threatening them. In practice, human rights discourse is no longer used to protect the vulnerable but to legitimize the global practices of neoliberalism. It often shares the vision of progress, growth and development that underlies neoliberal approaches and policies, hardly questioning the negative relationships between social context, trade and human flourishing. Global bioethics, if taken seriously, can redirect human rights discourse to ways to prevent future disasters.
- Global bioethics
- Disaster bioethics
- Human rights
Since 2000, several large-scale disasters have hit South-east Asia (2004), the US (2005), Haiti (2010) and Japan (2011). While major disasters happened before and smaller disasters occur almost every day, international concerns with disasters have increased significantly during the last two decades. Many international organizations, from the United Nations to the World Medical Association, are now involved in activities related to prevention of, preparation for, and recovery from disasters. It has also been recognized that there are many ethical issues in disaster management and response. In fact, a new field of bioethical activity has emerged, disaster bioethics (Zack 2009; O’Mathuna et al. 2014; Gluchman 2016). In this field, the main traditions of ethics (virtue ethics , and deontological and consequentialist approaches) are applied to normative questions faced in emergency responses to catastrophes , research with victims, policies of disaster preparedness , and efforts of long-term recovery . Generally, disasters evoke waves of empathy and solidarity across the world. They are often regarded as the best examples of the emergence of global humanitarianism that cares about human suffering everywhere and that takes action to save human lives and protect vulnerable populations. Modern humanitarianism is characterized by a particular moral geography. Care for victims is based on impartiality and neutrality (Walker 1997; ten Have 2014). Humanitarian intervention and assistance are driven by compassion, solidarity and beneficence . Their aim is to rescue the innocent and helpless. The assumption is that a higher moral order is at work. Normally, each government has the duty to protect its citizens. If states are no longer able or willing to protect citizens, and a disaster has annihilated the social infrastructure, others have the duty to help. There is a global moral order that necessitates assistance and intervention to prevent or mitigate evil. Disasters are therefore a common example in the emerging discourse of global bioethics . They are associated with processes and policies of globalization, particularly economic exploitation and climate change , like other global bioethical problems. But they are also calling for a broader ethical framework, going beyond the standard perspective of respect for individual autonomy .
2 Global Ethical Frameworks
The Indian Ocean Tsunami in 2004 was one of the worst natural disasters in recorded human history. It had an enormous media impact and humanitarian response. Charitable giving was unprecedented. However, reconstruction has been slow; many victims still are displaced; aid pledged by governments not delivered; donated monies not spent (Lewis 2006; Miliband and Gurumurthy 2015; Barnett and Walker 2015). Calls for reform of international disaster policies and management have been made since the 1970s after disasters such as the Bangladesh cyclone (1970) and the Sahelian drought (1970–1976). The same shortcomings continue to be observed for a long time: a focus on short-term recovery ignoring long-term pre-disaster needs; and poor coordination of many agencies involved in relief efforts (Michell 2001).
The dominant ethical framework for disasters is humanitarianism . Humanitarian assistance in disaster situations is ‘ethics in action.’ It is motivated by compassion and solidarity. It is first of all emergency ethics. Rescue people and save human lives is the first objective. The basic concern is immediate relief for individual victims. One does not need extensive elaboration of theoretical viewpoints to show what should be done. Humanitarianism illustrates how people care about each other and that they are all equal in their vulnerability. However, it is increasingly recognized that the humanitarian discourse has limitations (Fassin 2007). First, it is focusing on the value of saving human lives but not on other values such as human dignity and justice . The logic of compassion replaces the demand for justice. Second, it is directing its efforts towards individual persons, not on the local context of history, culture and economy that often is unjust, and has produced vulnerability. Third, it focuses on victims. Recipients of aid do not often speak out, they are generally silent and absent; the vulnerable are not given a voice. Finally, emergency ethics does not give equal attention to all lives; not everybody can be equally protected, not everybody can be saved. This focus also makes it difficult to provide structural, long-term aid in order to address the root causes of suffering (such as poverty , malnutrition, and bad governance ).
Criticism of the humanitarian framework, especially after the Indian Ocean Tsunami, directed attention to human rights. In disaster situations many violations of human rights may occur. Humanitarian professionals should not only be saviors but also protectors. The right to life can be neglected, as well as the rights to shelter, livelihood, and health. In addition, both populations and individuals can be discriminated against. Governments can neglect their duty to protect citizens. Although many earlier calls have been made to draft an international treaty on human rights to disaster assistance, after 2004 there was a rapid development of normative instruments related to disasters (for example, Operational Guidelines on Human Rights and Natural Disasters adopted by the UN Inter-Agency Standing Committee in 2006; Hurst 2010). United Nations agencies started to connect disasters and human rights approaches. In January 2010, the Human Rights Council organized for the first time a session on the human rights approach to disaster response, recovery, and reconstruction (Abebe 2011). The Council sent a powerful political message to governments that it is important to apply human rights during natural disasters. Protection of human rights is a key component of disaster management. Denial of human rights makes individuals and populations more vulnerable to devastation. In disaster conditions individuals have no control; but they have rights that are not suspended in such situations. On the other hand, governments have obligations to prepare and to protect. The emphasis on human rights was furthermore reinforced by the growing interest in the right to health. Many countries have ratified the International Covenant on Economic , Social and Cultural Rights. This multilateral treaty is in force since 1976 and includes the right to health. States must ensure that everyone within their jurisdiction has access to underlying preconditions of health, such as water, sanitation, food, water and housing. These are essential determinants of health; they are fulfilling basic needs especially in abnormal conditions of disaster (Carmalt 2014). The appeal to the right to health is under threat when natural hazards result in disasters. Human rights protections must be integrated in disaster prevention and planning, humanitarian assistance and rebuilding efforts. Human rights therefore provide another, or at least a complementary ethical framework for disaster bioethics .
Redefining humanitarian aid in terms of rights has several advantages. It is grounded on international human rights law that is not only a moral discourse but is also based on international institutions (cf. Gordijn and ten Have 2014). It implies global obligations and responsibilities . Actors and stakeholders can be held accountable to the international community . Human rights furthermore dignify rather then victimize. Helping people who are suffering from disasters is not merely a matter of compassion and charity; they have rights because they are fellow human beings, regardless of who and where they are. Humanitarian aid is a duty and an issue of global justice.
However, both ethical frameworks of humanitarianism and human rights have been criticized as inadequate and inefficient. The first is a major driving force for global solidarity but often unpredictable and incidental while human rights commit and are permanent obligations. On the other hand, human rights must be implemented by governments. Yet, whilst in disaster conditions governments are sometimes unwilling to discharge their human rights associated obligations, more often they are simply too overwhelmed to do so. From the perspective of global bioethics , however, there is no contradiction or opposition between the two ethical frameworks. In fact, both humanitarianism and human rights are based on the same underlying idea: the notion of vulnerability that constitutes a global moral community or shared humanity .
3 Vulnerability as Common Ground
The term ‘vulnerability’ is used in various disciplines ranging from philosophy, theology and ethics to ecology, computer science and physiology. There is an enormous diversity of formulations and interpretations. An interesting approach is proposed from a general system perspective focussing on the conceptual components of the notion, regardless of the domains in which it is used and irrespective of whether it is used for human beings, communities or countries. Neil Adger, climate change researcher from the United Kingdom, defines vulnerability as “the state of susceptibility to harm from exposure to stresses associated with environmental and social change and from the absence of capacity to adapt” (Adger 2006: 268). This is a functional, not a content definition. It does not clarify the fundamental characteristics of vulnerability but shows how the notion functions and relates to other concepts. This approach is useful since it urges us to consider the conceptual elements that we need to take into account in understanding the notion. Vulnerability is regarded as a function of exposure, sensitivity and adaptive capacity.
The first component is exposure. There must be external stresses or perturbations that produce potentially harmful threats. For human beings these threats are hard to avoid since they are continuously exposed to each other and to the social and natural environment.
The second component is sensitivity. This is susceptibility to harm or damage. In a general sense it is “the degree to which the system is modified or affected by an internal or external disturbance or set of disturbances” (Gallopin 2006: 295). From a medical perspective sensitivity is inherent in the body, organs, tissues and cells: they can be affected for example by lack of oxygen. From a general perspective focusing on the human person sensitivity is inherent in the human predicament, existing prior to any exposure.
The third component is the ability to adapt or capacity of response. Sometimes a distinction is made between coping ability and adaptive capacity. The first is the short-term capacity to overcome external stresses, the second is the longer-term adjustments. Human beings are able to cope, adapt and make adjustments; they can resist and overcome threats.
The functional definition underlines that vulnerability exists when all three components are present. For example when there is a threat of an infectious disease, the exposure is in principle the same for everyone, but the sensitivity is different: children and the elderly have more risks if they are affected. The adaptive capacity is better for persons who have access to medical care and medicines. The most vulnerable groups therefore are children and elderly with no, or only inadequate, access to the healthcare system. Another example is that in severe winter conditions, the exposure is in principle the same for everyone, as is the sensitivity. But the adaptive capacity is insufficient for homeless persons. This is what makes them vulnerable to cold injuries.
The use of ‘vulnerability’ in the scholarly literature is recent. In many cases it is just a descriptive or technical term. For example, a country can be particularly vulnerable to earthquakes. In the context of bioethics however, it has an ethical connotation. Here, the term ‘vulnerability’ is not a neutral attribute of a particular person or group of persons. Making an observation or giving a description could be done by using words like ‘exposed’ or ‘subject to’ in order to indicate that a person is threatened or capable of being wounded. In the discourse of bioethics, and perhaps also in some other discourses, vulnerability has normative implications. Vulnerability evokes a response; it encourages other people to provide assistance; we cannot leave vulnerable persons to their fate. If we can prevent them becoming wounded, we should take action.
Two aspects of the notion explain its normative force. First, vulnerability is conditional. A person is capable of being wounded but the wounds have not yet occurred; they will probably happen unless appropriate measures will be taken. This conditionality generates a responsibility to take care and preventive action. Second, vulnerability is associated with possible harm , not with positive outcomes. Vulnerability indicates that something negative might happen. The consequence of both aspects is that unless some action is taken a vulnerable person will probably be harmed or wounded. Because vulnerability is a potentiality there is also room for intervention. Perhaps the person can be assisted to protect himself, can be protected by others against harm, or made less vulnerable through various care arrangements. Perhaps harm can be prevented from taking place, or the impact of harm can be mitigated.
4 Central Role of Vulnerability
In the discourse of disaster bioethics vulnerability is a core notion. It is frequently used in connection to disasters themselves. It is also linked to theories of human rights. Finally, it has emerged recently as a new principle of bioethics.
4.1 Vulnerability and Disasters
Disaster experts regard Indonesia as a disaster-prone country. The eruption of Krakatau in 1883 was one of the most destructive volcanic events in recorded history. A long series of earthquakes and tsunamis has hit the country. Due to its geophysical location the country is more vulnerable than other countries to disasters (Puspita 2010). Other countries and regions are vulnerable to natural disasters for different physical reasons. Oceania for example includes many small island nations that risk disappearing when sea levels continue to rise (Lewis et al. 2013). Another type of vulnerability is social vulnerability. Pre-existing conditions such as poverty , dense populations, deforestation, and inferior building construction make some populations more vulnerable than others. Disasters often have the worst impact on the poor, the elderly and the disabled; they magnify social inequality (Zack 2009, 2014). Disasters are not only unforeseen events that cause damage, destruction and suffering , but they also overwhelm the response capacity of nations and require international assistance. They often hit poor countries that already lack capacity to meet basic needs of the population long before the disaster. They do not have the health infrastructures and treatment possibilities available in developed countries. Vulnerability, therefore, should be assessed at the national level but also for sub-groups within populations. Disaster vulnerability furthermore occurs because in disaster situations the enjoyment of human rights is threatened. Disasters are major sources of human rights violations (Hurst 2010). Especially the right to life and security maybe at risk. Many people will be displaced; they are vulnerable to exploitation. They face unequal access to assistance, discrimination in aid provision, unsafe settlement, and lack of property restitution (Brookings-Bern Project 2008). Years after Hurricane Katrina it was concluded that recovery efforts “have not compensated the most vulnerable parts of the population affected by the storm, who had the greatest relative losses ” (Zack 2011: 45). Disadvantaged populations were the most victimized, not only by the physical consequences of the disaster but also by the institutional and structural corruption, racism, neglect, fraud and violence during the recovery and reconstruction period (Voigt and Thornton 2015). Human rights violations reinforce various forms of vulnerability.
4.2 Vulnerability and Human Rights
Vulnerability is a core notion in international human rights language. Bryan Turner (2006) has developed the theory that the foundation of human rights is our common vulnerability. Human beings are embodied agents. Because of their biological vulnerability humans feel pain , and can suffer. They are also dependent on others to grow and mature, to become autonomous individuals and to be cared for in illness and ageing. They are socially connected because they need social support and legal protection. Vulnerability demands that humans build social and political institutions to provide collective security. Human rights have emerged because human beings have the capacity to recognize pain and suffering in others. Michael Ignatieff defends human rights with the argument of moral reciprocity. Human actions are justified or not because we are able to imagine the pain and degradation done to other human beings as if it were our own (Ignatieff 2001). The emergence of human rights language in the second half of the eighteenth century had been based on philosophical ideas of individual autonomy and equality. People learned to empathize with others and to think of others as equals (Hunt 2007).
Humans are moral agents; they have the capacity of moral empathy, conscience, and agency because they live in what Turner calls “an existential context of shared experiences of pain and humiliation” (Turner 2006: 9). Turner argues that human rights are universal principles because vulnerability is shared and thus constitutes a common humanity . Furthermore, it connects them as rights of individual human beings to social rights of citizens through social institutions and arrangements. However, such arrangements are always imperfect and inadequate, thus precarious. This dimension of precariousness is especially important in disasters. Vulnerability means world-openness. Humans are essentially vulnerable beings. They can never be completely protected and made invulnerable.
5 Vulnerability as a Phenomenon of Globalization
Vulnerability is an ambiguous notion for contemporary bioethics because it has emerged in a specific context of globalization. It is argued, for example, that the landscape of medical research has significantly changed (Ten Have 2016b). It is now a global enterprise, requiring a broader ethical framework. Globalization has created an asymmetry of power of which vulnerability is one of the major symptoms. It is also indicated that there is growing vulnerability, especially of women in developing countries, related to neo-liberal, global economic policies (Jaggar 2002). Failing states are blamed for increasing vulnerability due to the persistence of poverty and hunger (Watts and Bohle 1993). And it is observed that the discourse of vulnerability has particularly emerged and expanded in the context of global phenomena such as natural disasters and the pandemic of AIDS (Delor and Hubert 2000).
What exactly is the interconnection of vulnerability and globalization? During the 1990s the term ‘globalization’ was increasingly used in social sciences and public policy discourse (ten Have 2016a). While there are different interpretations of globalization, the common core of these interpretations has been identified as the operation of a dominant market-driven logic. This logic changed the nature of state regulation, “prioritizing the well-being of market actors over the well-being of citizens” (Kirby 2006: 95). Rules and regulations protecting society and the environment are weakened in order to promote global market expansion. A new social hierarchy emerged worldwide with the integrated at the top (those who are essential to the maintenance of the economic system), the precarious in the middle (those are not essential to the system and thus disposable), and the excluded at the bottom (the permanently unemployed) (Cox 2002). Precariousness, inequality , and exclusion are characteristics of this new social order of globalization.
According to this analysis, vulnerability is the result of the damaging impact of globalization. It is a symptom of social disintegration. As a consequence of this type of globalization, threats to human well-being increased and coping mechanisms eroded. In particular international and intergovernmental organizations are using the language of vulnerability to describe the impact of globalization (Brown 2011). The United Nations Development Program concluded in 1999 that growing vulnerability is the result of globalization: “People everywhere are more vulnerable” (UNDP 1999, 90). While acknowledging the vast progress in human development over the last decades, subsequent UNDP reports continue to use vulnerability as a core notion to pay attention to the weakened position of the most disadvantaged people and to advocate more equitable policies.
Due to increasing risks and lower resilience , people all around the world but especially in developing countries have diminishing abilities to cope with threats and challenges. Mechanisms of social protection are declining. The ‘space of vulnerability’ has widened (Watts and Bohle 1993). Vulnerability is produced by social, economic and political changes associated with globalization. It is therefore not an individual concern but is socially produced since society itself is affected. Society has become subservient to the needs of the economic system.
Analyzing globalization in this manner may explain the ambiguity of vulnerability for contemporary bioethics. According to the market thinking of neo-liberal globalization the human person is primarily homo economicus: a rational individual motivated by minimizing costs and maximizing gains for himself. In this perspective, humans relate primarily to others through market exchanges. Citizenship, the public sphere and social networks erode because social interaction is reduced to individuals and commodities that are traded (Kirby 2006). This economic discourse is not much different from the dominant discourse of contemporary bioethics that considers human beings primarily as autonomous individuals. Being ill, receiving treatment and care, and participating in research are first of all individual affairs; consent and individual decision-making are preconditions for cooperation with others. Precisely such discourse is questioned in the ethical perspective on vulnerability. If the human person is not an economic but a social being, he or she is not primarily motivated by material needs; acquisition of economic possessions is a means to social goods.
This analysis leads to a paradox. Over the past two decades vulnerability has become an important notion in bioethical debates. The focus on vulnerability is associated with globalization, in particular neo-liberal market policies that have exposed more people worldwide to more threats. These policies are based on the assumption that human beings are self-interested, rational individuals. In addressing vulnerability, contemporary bioethics is often using the same basic assumption, arguing that vulnerability should be reduced through empowering individual autonomous decision-makers. It is understandable that bioethics is concerned with the fall-out of globalizing processes for individual persons. But using an individual focus abstracted from the social dimension of human existence, and neglecting the damaging impact of market mechanisms on social life will not allow bioethical policies and guidelines to redress the creation of vulnerability. What is a symptom of the negative impact of a one-dimensional view of human beings is remedied with policies based on the same type of view. As long as the problematic conditions creating and reinforcing human vulnerability are not properly analyzed and criticized, bioethics will only provide palliation.
6 Vulnerability and Disaster Bioethics
What are the implications of a broader notion of vulnerability for disaster bioethics? When the vulnerable person is considered as a ‘failed’ autonomous subject, vulnerability will not only be located in the individual but will also imply a specific practical response, i.e. protection through substituting the lack of capacity through the voice of others. It is clear that this particular framing is normatively driven: it is the result of the primacy of the ethical principle of respect for personal autonomy . What is less clear is that significant dimensions of the notion of vulnerability are left out of consideration. For example, structural, social, economic and political determinants that disadvantage people are not deemed relevant. The focus on individual weakness preempts a social and political perspective that considers vulnerability as the outcome of specific situations; that argues that people are made vulnerable in specific contexts; that the notion is more related to the ethical principles of justice , solidarity and equality than individual autonomy. The paradox is that the discourse of vulnerability has developed in association with increasing processes of globalization. It gives voice to today’s experience that everyday existence is more precarious, that we are exposed to more hazards and threats, and that our capacities to cope have decreased. The fall-out of these processes for individual persons has correctly instigated bioethics to address the problem of how persons can be protected and empowered. But as long as bioethics does not critically examine the production of vulnerability itself it does not address the root of the problem. Framing vulnerability as a deficit of autonomy not only presents part of the whole story but it also implies a limited range of options and actions. In this sense, mainstream bioethics’ interpretation of vulnerability is ideological: it directs theoretical and practical attention away from the circumstances that make subjects vulnerable.
6.1 The Need for Global Bioethics
The emergence of the notion of vulnerability is a symptom of a new approach in bioethics, going beyond the limited perspective of mainstream bioethics. The global bioethics advocated by Van Rensselaer Potter is finally coming into existence (Potter 1988; ten Have 2012). The notion of vulnerability is challenging bioethics to develop and expand its theoretical framework beyond the principles and approaches established in the 1970s. It also urges bioethics beyond its initial frame of reference that is heavily influenced by North-American culture and ideology. A lot of theoretical work is currently done to develop such broader theoretical frameworks based on human rights, social justice, capabilities and global care ethics. Bioethics no longer is, as formulated by Albert Jonsen, “a native grown American product” that can be exported to other parts of the world (Jonsen 1998: 377). In this global era the product is essentially transformed. It is facing new problems such as poverty , corruption, inequality , organ trade and medical tourism for which the standard bioethical responses are inadequate. The scope and agenda of bioethics are inescapably widening, and it is precisely the notion of vulnerability that calls for such broader bioethics.
6.2 The Critical Discourse of Vulnerability
The notion of vulnerability is able to redirect bioethics debate since it has two significant implications. First, it implies the view that human persons are social beings. It challenges the idea that individual persons are autonomous and in control. Since the human condition is inherently fragile, all human beings are sharing the same predicament. Because our bodily existence is vulnerable, humans have developed institutions and social arrangements to protect themselves. This is neither an individual accomplishment nor a threat. Vulnerability means that we are open to the world; that we can engage in relationships with other persons; that we can interact with the world. It is not a deficit but a positive phenomenon; it is the basis for exchange and reciprocity between human beings. We cannot come into being, flourish and survive if our existence is not connected to the existence of others. The notion of vulnerability therefore refers to solidarity and mutuality, the needs of groups and communities, not just those of individuals. The second implication is that vulnerability mobilises a different response: if vulnerability is a symptom of the growing precariousness of human existence and is exacerbated in certain conditions, the social context can no longer be ignored in bioethical analysis. On the contrary, bioethics should focus on the distribution and allocation of vulnerability at global level. Instead of focusing on individual deficits, analysis should criticise the external determinants that expose individuals to possible damage and harm. It also means that individual responses are insufficient; what is needed is a collective response, in other words social and political action.
Redirecting and broadening the bioethical debate implies that critical analysis is directed on the root causes of bioethical problems. Processes of globalization are strongly influenced by neoliberal market ideology. The market is regarded as the main source of vulnerability and insecurity (Kirby 2006; Thomas 2007). Neoliberal policies are multiplying insecurities: less and more precarious employment, deterioration of working conditions, financial instability, growth of poverty , and environmental degradation. They also lead to the breakdown of protective mechanisms; safety networks and solidarity arrangements that existed to protect vulnerable subjects have been minimized or eliminated. Rules and regulations protecting society as well as the environment are weakened in order to promote global market expansion. As a result, precariousness has generally expanded. This is precisely what the market ideology wants to accomplish: people only flourish if they are confronted with challenges, if there is the possibility of competition. Individual security is “a matter of individual choice” (Harvey 2005: 168). It is exactly this ideological discourse that is replicated in mainstream bioethics’ interpretation of vulnerability as deficient autonomy. But if, on the contrary, vulnerability is regarded as the result of the damaging impact of the global logic of neoliberalism , a different approach will emerge. It is not surprising that the language of vulnerability is often used by international and intergovernmental organizations. The devastating effects of neoliberal policies are most visible in the developing world. But nowadays, existential insecurity is everywhere. It is also obvious that market ideology has not in fact enhanced human welfare. It has mainly promoted increasing inequality . It has created a world in which the 85 richest persons have as many financial resources as the 3.5 billion poorest people (Oxfam 2014). A small elite has appropriated the political process and has bended the rules of the economic system for its own benefit. Read the story of Iceland; in the 1970s and 1980s an egalitarian country with a rapidly growing economy. Neoliberal policies and privatization of the banking system in 1998–2003 resulted in fast enrichment of a small elite but massive indebtedness of the country so that in 2004 it had the highest national debt in the world (Reid 2014).
When bioethics discourse was initiated and expanded during the 1970s and 1980s the major moral challenges were related to the power of science and technology. How can patients be protected against medical interference and paternalism? How can citizens have more control over healthcare decisions? In what ways can patients’ rights be defined and implemented? These questions have shaped the agenda and methodology of mainstream bioethics, especially in more developed countries. But in a global perspective, many citizens do not have access to modern science and technology. They are marginalized in a system that is increasingly privatized and commercialized. They are exploited in clinical research projects since it is their only change to receive treatment and care. It is obvious that in this perspective, especially since 1990s, the major moral challenges have changed. It is no longer the power of science and technology that produces ethical problems but the power of money. Healthcare, research, education, and even culture and religion are regarded as businesses that are competing for consumers.
The irony is that neoliberalism is not liberal at all. It is increasingly combining market language with security concerns, creating ‘imperial globalism’ (Steger 2009). All citizens everywhere are continuously monitored and surveyed by a class of guardians who are not subjected to any legal regulation. A vast security apparatus has unleashed the techniques of a militarized empire. Nobody seems responsible. Accountability is absent. Political leaders deceive, deny and lie (Bamford 2013). Secret assassination programs with remote controlled killing machines do not follow the legal standards of trial and legal hearing. Talk about individual autonomy , let alone privacy and transparency, in this context seems rather vain. In many countries free market ideology is furthermore easily combined with authoritarian politics, fundamentalist religion or autocratic rule. The vast majority of the poor is shut out of public discourse. It is not want of money that makes people miserable; it is being trapped in a system that is rigged against them (Boo 2012).
When the major bioethical problems of today are produced by the dominance of neoliberal market ideology, bioethics should redefine itself as critical global discourse. Focusing attention on the social context will not be enough. Bioethics must argue for a reversal of priorities in policy and society: economic and financial considerations should serve the principles of human dignity and social justice , and no longer be ends in themselves. This implies specific strategies for social inclusion but also institutional support. It will be necessary to demonstrate more vigorous advocacy and activism, supplementing academic enquiry. Social inequalities and conditions that produce vulnerability are not beyond social and political control. It will also require that the voices of the disadvantaged, the deprived and the vulnerable are more often heard within the bioethical discourse, involving vulnerable groups in policy development and implementation. Global vulnerability is furthermore transforming the significance of cooperation. Forging global alliances and new networks of solidarity is the only way to address global threats. An individualistic perspective makes it impossible to address the root causes of vulnerability. Influencing and changing social conditions requires what Fiona Robinson has called “collective capacity to act” (Robinson 2011: 60). International human rights discourse provides the best approaches and mechanisms to redirect bioethics into this broader activity.
7 Human Right Framework for Disasters
When disasters strike, human rights are not lost. Citizens have the same rights as before but it will be more difficult to exercise them, and often there is a need to prioritize them because the circumstances do not make it possible to apply all at the same time. Governments also have the same duty to protect human rights but in disastrous conditions it may be more complicated to exercise this duty. Victims of disasters face various human rights challenges: unequal access to assistance, discrimination in aid provision, unsafe resettlement, property restitution, and displacement . These challenges can occur in different phases of disaster management. Human rights-based approaches should therefore be incorporated in all phases: preparedness , emergency relief and response, reconstruction and recovery. They should offer a holistic approach focused on the basic needs of victims.
It is argued that four categories of human rights are at stake in disasters. First is the right to the protection of life. This is the priority of disaster relief directly after the catastrophe has occurred. It is also, as discussed above, the primary concern of humanitarianism . Second are the rights related to basic necessities such as food, health, shelter and education. These are needs included in the right to health. Third are rights related to more long-term economic and social needs (housing, land, property and livelihood). Fourth are rights related to other civil and political protection needs (documentation, movement, and freedom of expression). While the first two categories of rights are especially relevant during the emergency phase, the two last categories are particularly relevant in the recovery and reconstruction phases (Brookings-Bern Project on Internal Displacement 2008).
This framework of rights shows the characteristics of a human rights-based approach. It emphasizes equality. Assistance should be provided on the basis of need. It is a coherent approach since rights are interconnected. The right to housing is linked with the rights to health and water. Furthermore, the human rights based approach is continuous; implementing the right to shelter demands a transition from rudimentary shelter into longer-term reconstruction or development (Carver 2011). However, in overwhelming situations, rights cannot be applied to everyone and not every right can be applied. This means that priorities have to be selected, and that triage is necessary, not merely at the level of individual victims, but also at the meso- and macro-levels (ten Have 2014). Furthermore, there is a need for interpretation, determining what a specific human right means in local conditions. Displacement is a common and major problem with disasters. The right to shelter means that people can live somewhere in security and dignity . But what is the content of this right in very different countries and who are the rights-holders? Human rights discourse does not specify what kind of shelter needs to be provided.
The human rights framework is particularly advocated for prevention and preparedness . One reason is that disasters will have a disproportional effect on people and populations that are vulnerable. Marginalized populations will suffer most. Pre-existing human rights violations, poverty , and government corruption will also impact outcomes of disaster response efforts. Mechanisms of injustice that exist before disastrous events happen will continue to manifest themselves during disaster response and recovery (Hurst 2010). Chile is a good example of how a human rights-based health system can guide disaster response to protect vulnerable populations such as children . Because of pre-existing programs, children and families could be quickly and efficiently supported after the earthquake of 2010 (Arbour et al. 2011).
International human rights law implies a universal duty to assure health and human dignity (Walker 1997; Gostin and Archer 2007). The idea of a common humanity that underlies the notion of vulnerability not only requests governments to protect the rights of individual citizens, but also implies an obligation for international cooperation and assistance, if governments are failing or neglecting human protection. The emergence of global bioethics demonstrates that human rights are a global concern. For example, prevention of disasters is a governmental responsibility . Governments should protect, as far as possible, the right to life and health of their citizens. Disasters can be prevented and citizens made less vulnerable through reducing exposure, enhancing resilience , and providing effective mitigations. Failure to take feasible measures that would have prevented or mitigated the consequences of foreseeable disasters amounts to human rights violations. A case in point is a judgment of the European Court of Human Rights in the Budayeva case . Mudslides in the Russian town of Tyrnauz killed several people and destroyed many buildings in July 2000. The protecting dams along the river were damaged from previous mudslides but never repaired. A state agency had warned the local ministry but no measures were taken. Claims of survivors were rejected by domestic courts arguing that the causes of death were natural. The European Court argued that Russia had violated the duty to protect life against the consequences of disasters. The state authorities had neglected the duty to take preventive measures against a natural hazard that was clearly identifiable; at the same time effective means to mitigate the risk were available to them. Therefore, the state is responsible and is obligated to compensate the survivors. Deaths caused by man-made or natural disasters can amount to a human rights violation by the state (Kälin and Haenni Dale 2008).
This case demonstrates the power of human rights discourse. Not only do human rights work as safeguards to protect against abuse of government power, they also provide positive entitlements. Rights that exist in normal situations, continue to exist in conditions that are not normal. A human rights-based approach furthermore requires accountability and empowerment. Local communities and people are enabled to claim their rights. Providing shelter is not charity, compassion or favor: it is a universal right. When a disaster takes place and relief is provided, governments can be held accountable (Da Costa and Pospieszna 2015).
At the moment, however, human rights discourse is still weak. Heads of states publicly denounce and ridicule the discourse. Many argue that domestic laws are more important than human rights. It is also weakly defended in practice by states that used to regard themselves as champions of human rights. It is criticized from a theoretical point of view as ideological and ineffective. It is argued that human rights are not universal but an instrument of Western countries to impose their values on the rest of the world. Another argument against human rights is that international human rights law is a great moral achievement with the noble intention of protecting the powerless and the vulnerable, but that in reality it is ineffective and has not improved human wellbeing. All major human rights treaties have been ratified by more than 150 countries, but in many countries the rights articulated in these treaties are continually violated (e.g. non-discrimination of women ; prohibition of child labor) (Posner 2014). Even international organizations do not take human right seriously. Recently, for example, the UN Special Rapporteur on extreme poverty and human rights criticized the World Bank for treating “human rights more like an infectious disease than universal values and obligations.” (United Nations 2015). They pay lip service instead of making rights operational. This critique in fact implies that human rights discourse can adopt, and perhaps often has, a neoliberal approach. It assumes that globalization offers opportunities to strengthen human security and provides for basic needs, rather than threatening it and making human beings more vulnerable. In this context, human rights are no longer used to protect the vulnerable and to argue that health is more important than trade, but to justify the global policies and practices of neoliberalism . An analogous assumption is that human rights have emerged in the tradition of individualism; they are primarily individual rights and therefore cannot address the structural causes of violence and oppression (Evans 2005).
Disasters are associated with ethical questions. The dominant framework dealing with these questions is humanitarianism , appealing to values such as saving human life, solidarity and compassion. This chapter argues that this ethical framework should be complemented with the framework of human rights. Disasters, humanitarianism and human rights are interconnected by the notion of vulnerability. Vulnerability reflects the precariousness of the human condition and the fragility of the human species. It is also a reflection of radical changes in contemporary human existence due to processes of globalization. Disasters occur because of (increasing) human vulnerability. At the same time, vulnerability is also the source of human rights. Because every human is vulnerable and there is a constant possibility of harm, human beings need each other and must cooperate. They need institutions such as human rights to survive and flourish. Vulnerability therefore is not just an individual attribute. Mainstream bioethics construes vulnerability as deficient autonomy . It does not take into account that autonomy itself demands appropriate conditions in order to arise, to develop and to be exercised. Vulnerability therefore is misconstrued as an individual attribute; rather it directs attention towards the underlying conditions for human flourishing. Vulnerability is not merely inability or deficiency but most of all ability and opportunity. Vulnerable subjects are not victims in need of protection or dependent on the benevolence or the strong. Human capabilities will develop when inequality and structural violence have been removed, and the appropriate social, cultural, political and economic conditions for human flourishing have been created. Ethics itself has emerged through reflection on the experiences of vulnerability. Human rights based approaches articulate a perspective that is stronger than humanitarianism .
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ten Have, H. (2018). Disasters, Vulnerability and Human Rights. In: O’Mathúna, D., Dranseika, V., Gordijn, B. (eds) Disasters: Core Concepts and Ethical Theories. Advancing Global Bioethics, vol 11. Springer, Cham. https://doi.org/10.1007/978-3-319-92722-0_11
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