Vulnerability

Challenging Bioethics

Henk ten Have

• Publisher: Routledge
• Year: 2016
• ISBN:
  9781317227885
• Edition: 1
• Topic: Medicina
• Subtopic: Salute generale

Alongside globalization, the sense of vulnerability among people and populations has increased. We feel vulnerable to disease as new infections spread rapidly across the globe, while disasters and climate change make health increasingly precarious. Moreover, clinical trials of new drugs often exploit vulnerable populations in developing countries that otherwise have no access to healthcare and new genetic technologies make people with disabilities vulnerable to discrimination. Therefore the concept of 'vulnerability' has contributed new ideas to the debates about the ethical dimensions of medicine and healthcare.

This book explains and elaborates the new concept of vulnerability in today's bioethics. Firstly, Henk ten Have argues that vulnerability cannot be fully understood within the framework of individual autonomy that dominates mainstream bioethics today: it is often not the individual person who is vulnerable, rather that his or her vulnerability is created through the social and economic conditions in which he or she lives. Contending that the language of vulnerability offers perspectives beyond the traditional autonomy model, this book offers a new approach which will enable bioethics to evolve into a global enterprise.

This groundbreaking book critically analyses the concept of vulnerability as a global phenomenon. It will appeal to scholars and students of ethics, bioethics, globalization, healthcare, medical science, medical research, culture, law, and politics.

1 The idea of vulnerability

DOI: 10.4324/9781315624068-1

Bioethical discourse nowadays often expresses concerns about vulnerability and vulnerable populations. People in countries where access to healthcare is limited can easily be seduced to participate in clinical trials of new drugs and thus become vulnerable to exploitation. People with disabilities can become targets of new genetic technologies, making them vulnerable to discrimination. Children with life-threatening diseases are vulnerable since they cannot take charge of their own decisions and depend on parents and proxy decision-makers. In these cases, special measures by other persons are required to assist and protect the vulnerable. Vulnerability functions as a warning sign that for some people special attention is needed. Ordinarily, persons can decide for themselves, identify their interests, and protect themselves. This is the general assumption in contemporary bioethics since it is dominated by the principle of respect for individual autonomy. Vulnerability is the flipside of this dominance. From the perspective of autonomy as the normative ideal, vulnerability is diminished autonomy. It is the exception to the general assumption, and therefore needs specific scrutiny.

The term ‘vulnerability’ is not often used in daily conversations. It sounds too sophisticated, perhaps even bombastic. Many people don't like the word because it conveys the impression that they are not in control of their lives or cannot cope with the conditions they are facing. The term also evokes images of miserable and dependent existence. At the same time most of us are aware that we are not always as strong as we like to be; we can catch a disease or have an accident and be wounded. In some conditions, the likelihood to be hurt is even higher – for example when we are suddenly confronted with a snowstorm or waiting in a busy hallway in the midst of the influenza season. We also know that some people are more prone to misfortune than others; they will be more easily hurt and will suffer injuries. Young children should not be allowed to walk out into a busy street because they are not even aware of the possible harms. Other people, such as the homeless, do not have a choice; for them everyday life is precarious but they have few means to protect themselves. In all these conditions people are vulnerable even if they are not labeled as such. Like bioethical discourse, ordinary language therefore seems to connect vulnerability with loss of control and power, with diminished individual autonomy. At the same time, it conveys the practical experience that all of us are vulnerable, at least in certain conditions and periods of life.

This book argues that the exceptionalist view of vulnerability is one-sided and biased. In fact, vulnerability is the general predicament of humans, while autonomy is the exception. Interpreting vulnerability as diminished individual autonomy, bioethics will not be able to fully understand and address issues of vulnerability. This is not merely a theoretical controversy about the relationship between autonomy and vulnerability. It has significant practical implications. It will be argued in this book that a new language of vulnerability has emerged in the wake of globalization. This language directs attention to the changing socio-economic conditions of human existence that often impair and reduce the decision-making capacity of individuals. Vulnerability therefore introduces a broader view of human beings within their existential settings across the world. Incorporating vulnerability as deficient autonomy within the dominant view of bioethics is not only inadequate for understanding and addressing vulnerability but also misses the opportunity for transforming bioethics into a global discourse.

In short, the purpose of this book is twofold. First, it will argue that vulnerability cannot be fully understood within the framework of individual autonomy. Second, the language of vulnerability offers perspectives beyond the traditional autonomy model that will support bioethics to evolve into a global enterprise. The argument will be developed in five steps. First, the meaning of ‘vulnerability’ will be explored, using cases of individuals, categories of persons, populations and countries to identify significant dimensions of the concept (Chapter 1). Second, it will examine how the notion is used in various scientific disciplines (Chapter 2) and how it is incorporated into the dominant discourse of bioethics in particular (Chapters 3 and 4). Third, a critical analysis of vulnerability will be provided from two perspectives. One is the philosophical perspective that vulnerability is a defining characteristic of the human species (Chapter 5); the other the political perspective that vulnerability is exacerbated by social, economic, and political circumstances (Chapter 6). The next step will be to show how vulnerability has emerged as a universal phenomenon due to processes of globalization (Chapter 7). These processes have articulated human vulnerability through changing the circumstances of human existence. Focusing on individual autonomy is not only misplaced but will not allow bioethics to scrutinize the sources of vulnerability in a global world. Finally, the theoretical and practical implications of vulnerability as a critical global discourse will be elaborated in Chapters 8 and 9.

What is ‘vulnerability'?

The word ‘vulnerability’ is related to the Latin verb ‘vulnerare’ (wounding) and the noun ‘vulnus’ (wound). The shortest definition of ‘vulnerable’ is ‘able to be easily hurt, influenced or attacked’ ^[1]. Dictionaries distinguish three uses of the term ‘vulnerable’ ^[2,3]:

1. susceptible of receiving injuries
2. open to attack or damage
3. capable of being physically or emotionally wounded.

The first two uses correspond to medical and military interpretations. ‘Vulnerability’ is commonly used in medicine and, in particular, in pathology referring to the capability to be hurt or the susceptibility for injury or disease (‘the lung is vulnerable to damage from these aerosols’). But it is also used in a military sense indicating a weakness in a defense system confronted with attempts to disrupt or harm the system (‘a vulnerable part of the frontier’). Both uses of the term have a technical connotation. It is important to describe and analyze the possibility of harm in order to better understand the normal functioning of the body and its components. But it is also the other way around. On the basis of the physiology of the body, organs, tissues, and cells we can understand and explain the possibility of pathology. Before one can imagine a medical intervention, one first has to comprehend where and how vulnerabilities will occur. The military interpretation of vulnerability also is primarily technical. It requires a technical risk analysis of possible threats and weaknesses in order to determine whether a particular individual, a group of citizens, or a country as a whole is at risk of attack. It is, like the medical interpretation, first of all descriptive; the relevant determinants need to be identified and analyzed before practical consequences can be outlined.

The third use of the term is more general. It associates vulnerability to a web of other notions such as damage, harm, or being hurt. It can also be associated with fragility, precariousness, weakness, frailty, and finiteness. One does not need to be a medical or military expert to understand the nature of vulnerability. A wound is a violation of the integrity of the person: it hurts, it disturbs, and it impedes daily functioning. This use of the term indicates that vulnerability cannot merely be described. There is a need not just for a technical analysis but for intervention and action. Because there is the capability of being hurt, there is at the same time the possibility for prevention and protection. This use of the term elicits normative connotations exemplifying its role in ethical discourse. This last use of the term will be explored by examining four examples where the term is applied to the elderly, the homeless, research subjects, and countries.

Examples of vulnerability

Senior citizens

In his analysis of vulnerability Barry Hoffmaster ^[4] discusses the example of his 85-year-old father who has lived in nursing homes since his heart attack and stroke 40 years ago. He is partly paralyzed, cannot eat and drink, and is immobile. He is dependent on the care of others but he also risks contracting multiple infections and diseases. Due to the physical damage, his father is extremely vulnerable. On top of his bodily impairment, he has developed dementia. Hoffmaster furthermore presents the case of his 84-year-old mother. For the longest possible time, she has taken care of her husband. She is in good physical health but because she is now excluded from caring for her spouse, she feels guilty and powerless and has become emotionally vulnerable.

In discussions of vulnerability, the elderly are paradigmatic examples. Confronted with declining biological and cognitive functions, they are at the same time exposed to higher risks for diseases and injuries. From a medical perspective, all the weaknesses and deficiencies associated with ageing can be identified and described. The elderly can be regarded as a vulnerable category for a number of specific medical reasons. But older persons are also vulnerable in a wider, general sense. Nowadays, more and more persons who are in this medically vulnerable category function very well until reaching a higher age. Even if they are in medically good condition, they are more vulnerable to external stress than younger people. In 2003, France was affected by an extraordinary heat-wave, making it the hottest summer in 150 years. An estimated 15,000 people died in the first three weeks of August due to the elevated temperatures, the vast majority over the age of 75. It was the holiday season and in cities like Paris, older people were left alone in small apartments without air conditioning. Precisely because of the cultural phenomenon that in France almost everybody goes on holiday at the same time during August, the abandoned elderly became vulnerable to the heat-wave. Medical and political authorities responded much too late and many medical services were closed because of holidays ^[5]. Senior citizens are not only vulnerable to extreme weather events. In most countries, the elderly no longer have a source of income through labor and instead depend on retirement benefits. They usually have more expenses for healthcare. This may lead to a precarious balance in daily existence. In September 2012, Spanish Prime Minister Mariano Rajoy recognized this delicate situation. He declared that in his fight against the economic crisis, he would not reduce pensions because of the disastrous consequences this reduction had in Greece and in Ireland. He explained, ‘Senior citizens are the nation's most vulnerable’. About one-fifth of the country's population collects pension but many pensions are below the minimal wage. At the same time, with an unemployment rate of 25 percent, younger generations are increasingly dependent on the elderly for financial support and housing ^[6]. The U.N. Population Fund recently made a similar call to protect the elderly ^[7]. One in nine people all over the world are 60 years or older. This figure will rise to one in five (two billion) by 2050. Contrary to what most people think, the majority of older people (two in three) live in developing countries. Also, in these countries, the elderly population exceeding 80 years of age is the fastest growing population. The growing number of older persons will create enormous challenges worldwide.

The previous examination concerning senior citizens clarifies some dimensions of the notion of vulnerability. First, it is clear that there is a difference between category and individual. Although the elderly as a category are vulnerable, the status of older individuals can be quite different. Depending on age, not everybody will be equally vulnerable. While there are good reasons to regard senior citizens as a vulnerable category, we cannot simply apply the label of vulnerability to everybody in this category. Doing so would be counterproductive since it will cause older persons to be singled out with the potential risk for discrimination and abuse. The prevalence of age discrimination in many countries has been a reason to connect ageing with vulnerability in the first place ^[8]. Second, vulnerability has various dimensions: physical, emotional or psychological, social, and economic. Being vulnerable can relate to internal conditions such as frailty, disease, and disability. Vulnerability can also relate to external conditions such as income insecurity, lack of access to quality health care, or an environment that is unfriendly for people with diminished mobility, and visual or hearing impairments. For many senior citizens, internal and external conditions are often combined and co-exist at the same time.

Homelessness

Another example of vulnerability concerns homeless people ^[9]. Homelessness is a persistent problem in almost all countries but it is hardly visible. The category of the homeless includes many different persons: migrants, unemployed, divorced, and abused. Most of them will be homeless for a period of time, not permanently. Some live in shelters, others on the street. It is difficult to estimate the number of homeless people. But it is not an uncommon condition. Approximately one percent of the U.S. population experiences homelessness each year (3.5 million people) ^[10]. More than one-third of this population includes children under the age of 18. The numbers indicate that over the past two decades, homelessness has increased dramatically. Furthermore, the expectation is that homelessness will significantly increase in the near future among the elderly ^[11]. As far as data indicates, in other countries the situation is not different. For example, in the Netherlands, there are 60,000 homeless persons according to estimations made by the Salvation Army based on the use of shelter facilities. The Dutch Ministry of Health has defined homelessness as, ‘Vulnerable people who have left their homes or were forced to leave because of a combination of problems and who are unable to live independently’ ^[12]. Vulnerability is particularly noticeable among homeless children. In India, an estimated 11 million children live on the streets. In Brazil, the exact number is not even known; estimates vary between 1 and 10 million children, many of whom are orphans who have lost their parents. In developing countries, there are almost no shelter services for the h...