ABSTRACT
Tuberculosis is a highly contagious airborne disease which is transmitted through emitted aerosol droplets of people infected with active tuberculosis. This mode of TB transmittance contributes to its high prevalence and rate of transmission in areas characterized by overcrowding, poor ventilation and populated by immunocompromised individuals. As observed while visiting the slums and clinics of Mumbai, these are the exact conditions which are found in urban India. Consequently, tuberculosis is the leading cause of infectious disease death in India, killing roughly 500,000 people a year. Furthermore, the emergence of multi-drug resistant strains of tuberculosis is complicating treatment regimes, as well as posing a serious threat to the health of the public. One of the primary causes of multi-drug resistance is non-adherence on the part of patients to medically prescribed drug regimes. Several relevant ethical issues are broached surrounding this non-adherence and the status of tuberculosis as an infectious disease; specifically, the proper understanding of autonomy in these circumstances and the role of the state in compelling non-adherent patients to comply with their treatments. The concept of autonomy within bioethics was largely developed with regard to non-infectious diseases or procedures which primarily affected only the individual patient. These current bioethical interpretations of autonomy do not readily apply to infectious diseases such as tuberculosis due to their contagious nature and the position of a patient as both a victim and a vector. This paper examines the moral value of various understandings of autonomy within the context of tuberculosis in urban India by applying rights-based ethics, deontology, the ethics of care and utilitarianism to the situation. The ethical permissibility of the state to compel non-adherent tuberculosis patients to follow their drug regimes is also analyzed based upon the bioethics of patient autonomy.
I. Introduction
"Play rocks with us!" Marea exclaimed. A simple children's game allowed some respite from the overwhelming sights common on the dirty streets of the Mumbai slums. After several games of "rocks," with stray dogs circling us and half-naked children tentatively begging for rupees, Marea and her entourage of slum children ran off to their make-shift huts. By most accounts, Marea was an encouraging sight among the generally depressing state of the slums. She was happy and relatively well-fed, spoke fluent English and seemed surprisingly well-educated given her surroundings. However, it was her surroundings that were the issue. The slums consisted of row upon row of continuous shacks, made from any materials available, and situated in a way reminiscent of tooth-pick buildings; remove one vital component and the whole construction tumbles down. More problematic than the architectural shortcomings is the fact that the slums contain no sewage system, are poorly ventilated and overcrowded - a potent combination that provides optimal breeding conditions for communicable diseases.
Among the plethora of possible illnesses exists a particularly silent and prevalent killer. Tuberculosis is an airborne infectious disease which is widespread among impoverished communities. This paper will examine various interpretations of the moral value of personal autonomy within the context of the victim/vector paradox as seen in an impoverished environment such as urban Mumbai, India. Rights-based ethics, deontology, the ethics of care and utilitarianism will be employed in this examination. Based upon these interpretations of a patient's autonomy, an analysis of the ethical permissibility of the state to compel non-adherent patients with active tuberculosis to follow their drug regimes will be made. Based upon this analysis, this paper will contend that a utilitarian approach is appropriate due to the nature of the disease.
II. Epidemiology and Treatment of Tuberculosis in Urban India
Tuberculosis (TB) is an infection caused by the bacteria Mycobacterium tuberculosis which primarily invades the lungs causing pulmonary TB. TB is transmitted through aerosol droplets of people infected with active tuberculosis; a patient's cough, sneeze or spit can be highly contagious and potentially lethal to those in close proximity, especially individuals in prolonged contact with the infected patient. The mode of TB transmittance especially contributes to its high prevalence and rate of transmission in areas characterized by overcrowding and poor ventilation and populated by immunocompromised individuals. So as Marea ran towards the coughs echoing out of her crowded shack situated in the center of her slum community, we wondered, not if, but the extent to which she had been exposed to the bacterium and whether her immune system would be strong enough to fight the disease for her.
As our visits to both the Municipal Tuberculosis Hospital and Kasturba Infectious Disease Hospital in Mumbai made painfully clear , tuberculosis presents a major public health issue to the urban areas of India, and has, according to epidemiological studies, done so for at least the past four and half decades.1 Tuberculosis is the leading cause of infectious disease death in India, killing roughly 500,000 people a year. 2 According to the World Health Organization, India accounts for roughly 20% of the global incidence of TB (with roughly 16% of the world's population), which translates to about 1.8 million cases occurring each year.3 Approximately 30-50% of the total Indian population, without regard to class, is infected with the TB bacilli; and the annual rate of [new] tuberculosis infection (ARTI), which is a measurement of the probability of contracting the infection within the span of a year, is estimated at 1-2%. Furthermore, this statistic is an under-representation of the disease situation in urban areas, in which there exists a significantly higher risk of infection than in the rural regions of India.4 Without taking into account multi-drug resistant strains, which will be discussed later, there are two categories of patients infected with tuberculosis: those who have been exposed to the bacilli but who have asymptomatic latent tuberculosis and those patients with active tuberculosis who can transmit the bacteria to others. Most of those infected with the tuberculosis bacilli have latent tuberculosis and at the present time pose no threat to their surrounding community because they are incapable of transmitting the bacteria. However, patients with latent TB need to be treated in order to prevent the disease's progression to active TB. Without this preventive treatment, there is a roughly 10% chance that a patient's latent tuberculosis will progress to active TB, and this statistic is greatly elevated when solely considering malnourished and immunocompromised patients, such as the members of Mumbai slum communities.5 This paper will focus on those patients who have progressed to an active tuberculosis state and are therefore capable of transmitting the disease. These patients, when left untreated, pose an immediate and potentially devastating threat to their communities.
An additional issue to be considered when examining the epidemiology of TB in India is the complicating factor of new multi-drug resistant (MDR) strains of tuberculosis. MDR-TB is a type of tuberculosis which is resistant to the usual antibiotics used for treatment and is generally defined as "resistance to two or more of the primary drugs used for the treatment of tuberculosis."6 This resistance occurs when the bacteria develop the ability to endure antibiotic attack and confers this resistance to their progeny. Resistance is conferred via genes carried in small, DNA-containing organelles called plasmids. These plasmids can pass from parent to progeny as well as between bacteria. 7 As the levels of resistant bacteria grow, so does the spread of MDR-TB throughout the population.8 However, though one can initially contract a MDR strain of tuberculosis, "on an individual basis, inadequate treatment or improper use of the anti-tuberculosis medications remains an important cause of drug-resistance tuberculosis."9 The proportion of TB patients who contracted MDR-TB, as opposed to individuals who developed MDR-TB, varies between 0.5% and 5.3%; however, when looking exclusively at individuals with previously treated, but probably improperly treated, cases of TB this rate ranges from 8% to 67% of the total TB population.10 The striking disparity between these two statistics may indicate that current treatment regimes are not fully successful and it is likely that patient adherence (or lack thereof) is a key factor in this failure.
The Revised National Tuberculosis Control Program (RNTCP) was created in 1992 after a joint evaluation by the Government of India, the World Health Organization and the Swedish International Development Agency found that the Indian National Tuberculosis Program (NTP) was inadequate in its treatment of tuberculosis. The current public health treatment plan in India, the WHO recommended Direct Observed Therapy, Short-Course (DOTS), was established as a model in 1993 by the RNTCP.11 Following favorable treatment success rates at a model DOTS center, the program was expanded to the general public in September of 2002.12 The program initially sorts patients into three categories. Category I consists of newly diagnosed patients with sputum smear positive TB, those patients who are seriously ill with sputum smear negative TB and extrapulmonary TB patients; category II consists of patients who have been previously treated; and patients classified as category III present with sputum smear negative or extrapulmonary TB and are not seriously ill.
The primary goals of "antituberculosis chemotherapy are to kill tubercle bacilli rapidly, prevent the emergence of drug resistance, and eliminate persistent bacilli from the host's tissues to prevent relapse. To accomplish these goals, multiple antituberculosis drugs must be taken for a sufficiently long time."13 The treatment regime afforded by the DOTS program calls for the prescription of drugs dependent on a patient's category; category I patients are initially treated intensively with four drugs, and later treated with two drugs during a four month continuation phase. Category II individuals are treated initially with five drugs during an intensive phase lasting two months, followed by a one month period of treatment with four drugs and a subsequent continuation phase of five months treatment with three drugs. Category III patients are treated with an intensive phase of two months with three drugs and a continuation phase of four months with two drugs.14 These drug regimes are administered under the direct supervision of treatment supervisors and faculty at DOTS centers, at least for the initial intensive phase of the treatment.
The DOTS treatment and control strategy, established by WHO, combines five elements vital for successful implementation; political and government cooperation, the resources and ability to diagnose TB cases using sputum microscopy, standardized short-course drug therapy given under direct observation, constant supply of quality drugs to patients with reliable distribution techniques, and recording and reporting of patient outcomes in order to assess the overall effectiveness of the program.15 Although these protocols clearly outline procedures within ideal conditions, the DOTS strategy, which is now said to be available for about 87% of the Indian population, has reported cure rates consistently over 80%.16 However, though the medical treatments are physically ingested under direct supervision (at least in the initial phases), it is largely the responsibility of the individual patients to report to the DOTS or treatment centers. Based upon our experiences at the tuberculosis clinic in Mumbai and through speaking with the specialists employed there, it has become clear that many patients fail to consistently report to the centers, thus presenting the issue of non-adherence. This non-adherence poses a threat to the community in two regards. First, non-adherent patients with active tuberculosis continue to be a vector of the disease and thus are readily able to spread the harmful bacilli. Secondly, and even more troublesome, non-adherence promotes the development of MDR-TB which can also be spread to the community and for which treatment is not as readily available. Therefore, an active TB patient's non-adherence to a drug regime is detrimental, not only to themselves, but also to the greater community.
There are many complicating factors that may contribute to this non-adherence and which negatively affect a community's ability to implement a DOTS program that is effective. These include, but are not limited to, high rates of poverty and illiteracy, poo r accessibility to health care facilities and a lack of education on healthcare matters. Each of these provides barriers, whether monetary, environmental or knowledge-based, which inhibit a patient's ability to fully adhere to a treatment regime. For example, a tuberculosis patient within the slums of Mumbai may travel to a DOTS center and begin treatment; however sometime within the lengthy treatment process the patient may be unable to come to the center. This could be because she needs to stay at home and care for children, or is needed for work, or is not able to spend the money on the taxi or rickshaw needed to get to the DOTS center. Due to these obstacles, a patient may be unable to continue treatment, and thus be non-adherent. Many of these factors are external to the patient and require an in depth analysis of the socioeconomic factors and governmental responsibilities related to public health concerns. However, there also exist individual factors and decisions which inhibit the effective treatment of tuberculosis, and thus present an increased threat of infection to the public. The effective treatment of TB, given its highly infectious nature as well as the possible obstacles to successful treatment internal to the individual, raises some intellectually stimulating and important applicable ethical issues which were largely ignored by early bioethical theorists due to a variety of reasons.
III. Distinguishing Features and Ethical Importance of Infectious Disease
As an infectious disease, there is little research or commentary on the ethics surrounding tuberculosis. Bioethics emerged as a field of study, primarily in Western countries, during the late 1950's through 1970's. During this time, infectious disease was regarded by many public health officials as a problem of the past, thus little attention was given to the topic in the early texts (see Francis 2005 for an analysis of nineteen texts published before the advent of HIV/AIDS and their lack of attention to infectious disease). This triumphant stance, though short-sighted, was understandable; by the late 1950's the polio vaccine had been developed by Jonas Salk and later refined by Albert Sabin, tuberculosis levels were low in developed countries due to improved sanitation and public health, and the HIV/AIDS epidemic had yet to emerge.17 So widespread was the opinion that infectious diseases had been "almost completely conquered" that in 1972 the United States Surgeon General Jesse Leonard Steinfeld declared that "it [was] time to close the book on infectious disease," as a public health problem.18 The absence of infectious disease as a serious consideration for early bioethicists left the field ill-equipped to deal with the unique conceptual issues which surround communicable diseases. Specific characteristics of communicable diseases, such as the fact that a patient is both a "victim and a vector," that the illness can be rapid and acute rather than chronic, and that they are vastly more prevalent in impoverished and malnourished populations, present relevant ethical issues that are not necessarily compatible with the prominent bioethical approaches which have dealt almost exclusively with autonomy and informed consent within the realm of chronic illnesses or individual choices.19 Issues such as abortion, euthanasia, cloning, and stem cell research have received the bulk of the attention and resources within bioethics, all of which are topics which are largely non-applicable to the majority of the world's population. This situation mirrors the "10/90 divide" observed in the funding of medical resources; "less than 10 percent of [medical] research funds are spent on the diseases that account for 90% of the global burden of disease…diseases affecting large proportions of humanity are given comparatively little attention."20
The ethical attention given to infectious diseases grew with the emergence of HIV/AIDS in the 1980's. However the nature of HIV transmission, direct contact with body fluids such as blood, vaginal secretions or semen, makes its ethically relevant concerns significantly different from those of the more readily acquired tuberculosis. It is impossible to approach tuberculosis with the same frame of mind and ethical tools as are used when examining the ethical issues raised in HIV/AIDS. Many of the aggravating issues related to the spread and treatment of tuberculosis are due to the fact that an individual can act as a vector by simply breathing and coughing in his everyday surroundings, a concern that is not relevant to HIV/AIDS.
Furthermore, when infectious disease is discussed, the ethical issues broached are generally assumed to be external to the patient in that they are primarily the fault of a patient's environment due to governmental and social shortcomings. To be sure, infectious disease and a patient's environment are inextricably tied; its contagious nature allows for unintended invasions on the health and well-being of others from a single individual. Concerns such as socio-economic class, governmental responsibilities, and the vast effects of the environment upon contraction of the disease are ethically relevant, and it is vital that they be considered in discussions of the epidemiology and treatment of communicable diseases. Additionally, it is nearly undisputed that the incidence of most infectious diseases, and tuberculosis specifically, is closely related to the topic of social justice. Specifically, the malnutrition, poor sanitation, crowded living conditions and lack of access to education and medical supplies characteristic of the impoverished communities of developing countries make their populations particularly vulnerable to infectious diseases.21 That the difficulties of those already devastated by poverty are further compounded by an increased likelihood of falling ill to a disease like tuberculosis is a striking injustice, and one that is rarely acknowledged by the privileged populations of the developed world who are sheltered by an abundance of vaccines and high levels of nutrition, sanitation and hygiene.22 A full analysis of the ethical issues surrounding tuberculosis would be obligated to examine the "complex social, political, historic, and economic dynamics," which influence global public healthcare in relation to infectious diseases.23
Nevertheless, it is possible to examine the ethics of an infectious disease, such as tuberculosis, with regard to an individual non-adherent patient. There are various reasons for non-adherence to a medically prescribed drug regime. As previously mentioned, many of these causes are external to the patient and prevent a patient's access to and ability to acquire the drugs. Educational shortcomings, due to governmental deficits such as lack of funding, which render the patient ignorant to the causes and progression of the disease and importance of the treatment should also be considered external; an individual should not be faulted for a lack of educational resources or information provided to them. However, especially with the advent of DOTS therapy, patients are being given increasing levels of information and access to medical treatments, and many of the reasons for non-adherence are shifting to those more commonly seen in developed countries in patients with a variety maladies and drug regimes. Patients may become lazy or inattentive, or just decide that they are feeling better and that they do not wish to continue drug therapy. That patients would discontinue drug therapy simply when overt symptoms cease could be considered an issue of educational and informational short-comings.
However, virtuous behavior does not necessarily follow from knowledge and many well-educated and informed patients may decide to discontinue drug-therapy even when properly informed of the consequences. This stance is not meant to de-emphasize the effects of patients' environments, their socioeconomic status or the responsibilities of the state to provide opportunities for treatment of their tuberculosis; if the cause of non-adherence is an external factor then, it becomes the state's moral duty to act to rectify this. Rather, this stance is meant to establish that there is an aspect of individual choice and responsibility in adhering to a drug regime and, due to the nature of infectious disease and tuberculosis specifically, that this choice has vast effects upon the larger community. This paper focuses on tuberculosis patients who are non-adherent to their drug regimes due to causes internal to themselves, rather than external social and governmental reasons.
The primary characteristic of infectious diseases that separates it from other medical issues is the fact that an infected individual is both a "victim and a vector."24 This distinguishing feature, particularly pronounced in the case of tuberculosis due to its highly contagious mode of transmittance, "places us [those infected] in the position of putting others at risk, whether or not [they] want to be in this position."25 This feature is also what raises infectious diseases' unique ethical questions with regards to non-adherence, autonomy and the role of the state. Neither abortion nor euthanasia, stem cell research nor cloning possess this peculiar paradox which makes the patient also the perpetrator. Therefore the traditional ethical conceptualities of patient autonomy and the role of the state are largely irrelevant.
IV. The Definition of Autonomy in Regards to Tuberculosis Patients
Beauchamp and Childress describe personal autonomy as "at a minimum, self-rule that is free from both controlling interference by others and from limitations, such as inadequate understanding, that prevent meaningful choice."26 This explanation encompasses the two major conditions of autonomy: liberty and agency. Informed consent is centrally related to the concept of autonomy in that it is generally required as a way to respect and protect the autonomous choices of individuals, and when related to the medical field, to respect the individual's choices of medical treatments. Broken down into its components, "the information component refers to disclosure of information and comprehension of what is disclosed. The consent component refers to both a voluntary decision and an authorization to proceed."27 This informed consent standard assumes that patients are competent and able to understand their choices, as well as the ability to appreciate how each choice may coincide with their established ethical values. However, both of these ideals, patient autonomy and informed consent, "focus myopically on the significance of the treatment decision for the individual patient."28 For example, within the realm of reproductive rights and assuming that an unborn fetus is not an individual person or autonomous moral agent, a woman's decision to undergo an abortion is her own autonomous decision; a decision that is assumed to physically and directly affect no one else. Her autonomous decision is hers alone, and she need not take into account the opinions or wishes of others.
However, this is not the case with infectious diseases. The information provided to a patient determined to be capable of autonomous choice- such as the nature of the condition, treatment options and side effects- are all related to the individual patient and how it affects that individual. Autonomy gives no consideration to the effects of the condition and subsequent treatment on the patient's friends, family and acquaintances. However, the victim/vector paradox demands that the issues of autonomy, and the related concept of informed consent, be examined in regard to "the extent to which the patient's decision about treatment- or nontreatment- may affect the health status of others."29 The communicable nature of tuberculosis highlights how, though we are autonomous agents, we are vulnerable to infection due to our relationships with others.30 It could therefore be argued that the state must take these distinctive characteristics of tuberculosis into consideration when dealing with non-adherent patients who pose a threat to their community at large.
A notably pertinent question concerning these issues is whether a patient (as a victim), once informed of his condition and its infectiousness, and who persists in non-compliance (thus exacerbating the patient's role as a vector) can be compelled by the state, as an arm of the moral community, to adhere to treatment. Debate should arise as to whether the patient has the ethical right to exercise his autonomy in the traditional sort of manner, and thus have the right to refuse treatment, even when doing so would increase the possibility of transmitting detrimental effects to others. This debate broaches the subject of whether the standard bioethical understanding of an individual's autonomy is relevant in regards to tuberculosis, where that patient is both a victim and a vector. The understanding of autonomy in regards to tuberculosis subsequently determines what action by the state is morally permissible in protecting the health of the community from a non-adherent tuberculosis patient.
Various ethical schools of thought would approach this difficult dilemma differently. Given that in the case of tuberculosis, an infected individual can spread the disease and threaten the health of whole communities, one approach emphasizes "public health measures required to protect other individuals and society from contagion [which] might involve surveillance, mandatory testing, mandatory vaccination or treatment, notification of authorities or third parties, isolation of individuals, quarantine or travel restrictions."31 Those that support this utilitarian approach would likely deem a patient's refusal of treatment or non-adherence to the treatment of tuberculosis as unethical because of its potentially harmful effects on others, and thus contend that state-enforced compulsory treatment is not only morally permissible, but also the state's duty. On the opposite end of the spectrum, are those that promote libertarian aims "to protect privacy and individual rights and liberties such as freedom of movement, and so on."32 Between these two extremes exists other schools of ethical thought such as deontology and the ethics of care. The challenge is to determine an understanding of autonomy that balances both the libertarian and utilitarian goals and from which a principle for the duty of the state in protecting the community from non-adherent active TB patients can be derived; this will be done by examining the ethics of individual autonomy in regards to tuberculosis in urban India under the framework of libertarian or rights ethics, deontology, ethics of care and utilitarian public health aims. This analysis will take place with regards to an adult individual with active TB who is non-adherent to his drug regime and living in the previously described enduring and overcrowded conditions characteristic of the slums of Mumbai, India.
V. Ethical Approaches to Autonomy
Rights-based theories of ethics (rights ethics) and morality, referred to as liberal individualism by Beauchamp and Childress and said to be promoting libertarian aims by Selgelid, concentrate on the protection of individual rights promoting freedom, liberty and expression. Since the time of philosopher Thomas Hobbes, we have used the language and theory of rights in both the moral and political realms to protect against injustices such as oppression, unequal treatment, intolerance and much more.33 These "rights," so ubiquitous in our Western culture, are defined as "justified claims that individuals and groups can make upon other individuals or upon society; to have a right is to be in a position to determine, by one's choices, what others should do or need not do."34 Claims of rights are based upon moral rules, and a claim, and its attendant right, is valid only if it is prescribed and justified by the relevant rules. Rights are generally viewed as prima facie claims, in that they can be justifiably overridden in certain circumstances. However, some theorists such as Ronald Dworkin, have presented more absolutist definitions which promote the ideal that some rights are so basic and ingrained that "ordinary justifications for interference with rights by the state, such as reducing inconvenience or promoting utility, are insufficient."35 In this view, some of the rights of individuals are placed above utilitarian, social-interest goals, and may not be infringed upon. The general rights ethics approach is not nearly this absolute; most theorists agree that rights can be justifiably overridden or infringed upon in certain circumstances, such as legitimate and demanding needs to protect the well-being and rights of others.
Another important distinction within the field of rights ethics is between positive and negative rights. Positive rights are justified claims "to receive a particular good or service from others, whereas a negative right is a right to be free from some action by another."36 It is generally easier to justify negative rights, such as privacy or autonomy which prevent others from acting so as to negatively affect an individual, and therefore my focus is primarily on negative rights. Within this rights-based, libertarian view of ethics, "the function of morality is to protect individuals' interests (rather than communal interests), and rights (rather than obligations) are our primary instruments to this end."37 From the viewpoint of theorist Robert Nozick, autonomy in this context is basic to moral life in that "all persons have a right to be left free to do as they choose,"38 and it is the obligation of others' not to interfere with this right.
Deciphering the approach that rights ethicists would take concerning a noncompliant tuberculosis patient is relatively easy. The absolutist, libertarian stance would stress the importance of privacy and autonomy, and of preserving these rights, even at a cost to a community as a whole. Therefore, despite the patient's status as a vector, extreme options such as quarantines which would restrict the patient's right to liberty and freedom would be morally impermissible. Autonomy within this approach would be acting according to one's desires within his individual rights without regard to the surrounding community. Therefore, under this view of autonomy, the state would not be morally justified in compelling non-adherent patients to comply with their drug regimes. This inaction would put the community of the non-adherent patient at risk.
There are clearly large gaps in this approach, and it is very rarely taken in regards to healthcare issues, especially when dealing with infectious disease. The first issue that must be considered is that when dealing with tuberculosis, due to the individual's status as both a victim and a vector, the autonomous choice of an individual, protected by rights, may violate the rights of others. And though imposing limits on a patient's autonomous choice would be considered an infringement of their rights, it is also impermissible to allow the rights of one person to violate the rights of another. Infectious disease is distinctly different than other medical cases which generally directly affect only the individual patient. If a man with congestive heart failure fails to adhere to his medical regime, either due to preferences or ignorance, his act is affecting no one but himself. According to the libertarian ethics it is his right to act as he pleases; he possesses the negative right to non-interference in making his own autonomous decisions.
However, tuberculosis, due to its mode of transmittance, is a very different matter; "like firearms, infectious disease poses a danger to others."39 With the analogy of infectious diseases to firearms it is clear that an individual's right to non-interference and thus autonomous choice (to refuse adherence to a treatment regime) does not trump another's right to avoid assault (from either a firearm or contagion). Due to this issue, which is exceptionally pertinent in the case of tuberculosis, an absolutist rights-based ethical ideology is insufficient and largely implausible. Indeed, according to the harm principle of John Stuart Mill's On Liberty, "society is justified in intervening to prevent harm to others, but not to protect us from ourselves."40
Therefore infectious disease would constitute circumstances in which an individual's rights could be justifiably overridden. The risk of multi-drug resistant (MDR) strains of tuberculosis further undermines the stance of rights ethicists. Non-adherence to drug regimes, which theoretically would be the right of an individual patient, contributes to the development of these MDR strains which increases the risk of others contracting an incurable form of the disease.
Deontology, commonly referred to as Kantian ethics, is based upon the Categorical Imperative which states that morally admirable acts should be done regardless of our desires or inclinations and based strictly upon rational and practical judgments which can be universalized as a norm. Based on this view, morality stems from reason and the "moral worth of an individual's action depends exclusively on the moral acceptability of the rule of obligation on which the person acts."41 Therefore, in Kantian ethics, an action is only morally permissible if the motives behind that action came from a sense of obligation to a previously reasoned rule, or "maxim." Because deontology disregards consequentialist approaches , if a person conducts themselves in accordance with an obligation to a maxim but not "for the sake of obligation," then he is not acting morally right, because that is done through "acting for the sake of obligation."42 This sort of morality requires "autonomy of the will which, in turn presupposes freedom."43 Kant viewed rational beings as free because they could, using their own practical reason, act; therefore if we are capable of this sort of free self-legislation, we are capable of autonomy and thus "bound by morality."44 So, though all rational beings are capable of autonomy, only those who choose to act on moral law, due to obligation to the Categorical Imperative, are truly acting autonomously and morally virtuously. Autonomy requires acting "for the sake of duty"45 to a rationally derived principle, or maxim which can be "universalized as a norm of conduct."46 These duties or obligations are a priori, or categorical, in that they do not depend upon the circumstance and t hat even praiseworthy goals are not justified by immoral action.
As the above description outlines, the Kantian concept of autonomy is not congruent with the contemporary bioethical definition of autonomy; Kant's autonomy is not "'What do I really want, and is it best for me?'; rather, it is of moral autonomy which applies universally, and asks the question 'Is this what I ought to do?', morally speaking."47 Within the context of infectious disease, a maxim or rule derived using rational and impartial thought and which could be universalized, would first have to be established. The obvious maxim would be that everybody should adhere to their medical and drug regime; this is rational and could easily be universalized. Patients who then complied to this maxim, for the sake of duty, could then be classified as autonomous a gents. They, as rational beings, were capable of autonomy and bound by morality.
What about those that did not act according to the moral, universalized law? By deontological theory, they would be considered agents who are not acting according to duty and to reason, and therefore are exercising their agency in a morally impermissible manner. However, the relevant issues that arise are first, the practicality of the maxim to be universalized and second, the determination of actions of tuberculosis patients. It is at this point that deontology falters in regard to infectious disease. The maxim that everyone should adhere to their medical and drug regime is ideal. However, most tuberculosis cases do not occur under ideal settings; the slums of India certainly are not. It is not the case that patients are fully knowledgeable about the disease, its transmission and epidemiology and also have the resources and ability to consistently secure medications, and then decide against complying with their drug regimes. Rather there are adverse circumstances which, in some cases, prevent compliance with the medical regimes, thereby preventing moral agents from behaving, for the sake of duty, in compliance with the maxim. These circumstances are what a deontological approach ignores; morality and autonomy are derived from universal maxims not assessed within each individual case and circumstance. Requiring a course of action from an individual without regard to their circumstances demands too much from an individual and may, unfairly, label actions as immoral and non-compliant with the maxim.
Furthermore, deontology emphasizes rational and impartial cognition leading to the realization of one's duty to act in accord with the maxim; this is what it means to be autonomous. Like many people, infectious disease patients, especially in the circumstances of Indian slums, would rarely come to this realization. In addition to external constraints, patients are "more than [our] rational faculties."48 We have inclinations, emotions and relationships that combine with rationality to determine actions and in the view of deontology the inclusions of these factors would corrupt an individual's autonomy. The contraction of an infectious disease carries with it many emotions, derived from worry of social or cultural stigma among other sources, which prevent a patient from being completely and solely rational. However, it would be erroneous to declare all of these patients as non-autonomous, which is what deontology can seem to conclude. Nevertheless, a non-adherent active TB patient is acting neither according to duty nor in a rational and competent manner and therefore deontology would label him as not properly morally autonomous and declare that it would be morally permissible for the state to act in a paternalistic fashion in order to compel the individual to act in a way that coincides with that which is prescribed by duty.
The ethics of care, originally developed by feminist psychologists and theorists, rejects many of the principles, rules and impartiality that is so ingrained in traditional ethical theories. The universal rules prescribed by the deontological approach and the individual rights and personal autonomy emphasized within libertarian rights ethics are seen as largely irrelevant in a realistic context which includes complex personal relationships. Instead, the ethics of care emphasizes "traits valued in intimate personal relationships, such as sympathy, compassion, fidelity, discernment and love."49 These traits are inherently emotional, and imply a deep caring and regard for another individual(s) and a willingness t o act in a way that benefits that relationship and the other individual. Associations with others and the responsibilities that are derived from these relationships are of utmost importance; a realization of the interconnectedness associated with the needs, care and prevention of harm to those surrounding one is seen as morally admirable. Rather than discarding emotions, partiality, and "overemphasizing detached fairness,"50 as the traditional moral theorists have done, the ethics of care contends that emotion and partiality promote morally admirable, caring relationships attached to the needs of others. This engaged and contextual moral framework presents a very different outlook of personal autonomy. The individual autonomy, based in rights and obligations, is seen as irrelevant and is instead replaced with a "relational autonomy"51 which incorporates the view that we cannot be viewed as isolated agents, separated from our relationships.
This approach is much more applicable to the realm of infectious disease. It acknowledges the diverse array of factors that combine to influence behavior. Furthermore, it emphasizes the fact that no patient, especially a tuberculosis patient, is an isolated individual; "contagious, infectious disease, moving quickly from individual to individual, reminds us that we do not exercise our agency on an island."52 Determination of autonomy cannot pretend that we are fully rational, isolated beings and the context of tuberculosis makes this point particularly pertinent. However, the ethics of care does not fully explain autonomy within infectious disease. The relationships which are emphasized in this theory are caring, loving and intimate relationships with individuals to which one is close. Infectious disease, however, affects not just close relationships. The patient, as both the victim and the vector, may infect others that are strangers, as the result of accidental interaction, and a concept of relational autonomy must reflect this vulnerability. Under the concept of relational autonomy and with a consciousness of the vulnerability of others, a state-enforced compulsion to adhere to a medical regime would be morally acceptable. If a patient with active TB is not adhering to their medical regime, the individual is ignoring his role as a relational and connected person.
Directly opposed to the deontological stance that an individual's motives determine the morality of an act is the consequentialism of utilitarianism. Consequentialism describes theories which hold that the consequences of an act determine whether that act was morally permissible or not, and therefore we should act in a manner which will produce the "best overall result, as determined from an impersonal perspective that gives equal weight to the interests of each affected party."53 This stance is the ideology from which utilitarianism springs, a principle that states that moral assessment should be based upon the amount of positive value, after being balanced with the negative disvalue such as pain, which results from an act; all individuals should conduct themselves in a way that, impartially, maximizes "good."
Divides exist at this point in the theory.54 Some theorists maintain the hedonistic perspective that happiness is the positive value which should be maximized while others hold that there are additional intrinsically good values- such as health, beneficial relationships or knowledge- that also have substantial worth and that they should be taken into account when calculating the total utility of an act. Other theorists don't deal exclusively with intrinsic values, such as happiness and health which it is reasonable to assume that everybody values, but instead hold that utility refers to preferences and that morally mandatory behavior acts to maximize the satisfaction of preferences for the greatest number of individuals. Another split within utilitarianism occurs across the issue of act versus rule utilitarianism. Rule utilitarianism analyzes the consequences of adopting a formal rule, and then strives to adopt the rule which maximizes positive utility. Act utilitarianism, on the other hand, does not consider rules and instead just directly evaluates the effects of specific, individual acts.
Utilitarianism is commonly utilized within the field of public health. Using the resources at hand to best treat and care for the most infected people is generally seen as the most morally responsible approach. However, autonomy is all but ignored in this theory which presents conflicts between "the priorities of public health" and the individual rights emphasized in the medical ethics of autonomy. The most common forms of utilitarian "public health interventions are quarantine, isolation, and mandatory treatment of infected persons. Such interventions raise conflicts between citizens' liberties and public health interests."55 It has been argued as an objection to the utilitarian approach to public health, which "requires individuals to always do the best they can for the common good,"56 that utilitarianism is over-demanding since it "as a moral theory, requires one to aggregate the risks for all persons, and to weigh these against the expected costs of one's precautions."57 Therefore, a state-enforced compulsion to adhere to tuberculosis treatment would be considered overly demanding and ignoring the individual's autonomous decisions and desires to maximize their preferences and happiness.
VI. Synthesis
In the slums of Mumbai, where the conditions and environment facilitate the rampant spread of tuberculosis, an active tuberculosis patient's non-adherence to a treatment regime presents a significant risk to others within his community. Due to a patient's status as both a victim and a vector the traditional definition of autonomy is insufficient. It is critical that the individual's autonomy be alternatively understood with regards to infectious disease and tuberculosis; and following the previous analyses it is both logical and critical that a patient's autonomy be considered relational. A tuberculosis patient "is not ill by themselves, they are ill because of something that has come from others and could go to others."58 In other words, they were vulnerable and others now are vulnerable because of them. The fact that an individual is an unwilling vector does not diminish the fact that he must view himself, and his autonomy, as embodied and relational. Though the ethics of care portrayed by its feminist founders emphasizes close, intimate relationships and, by its nature, tuberculosis can affect mere acquaintances, it is still the most relevant definition of autonomy within this situation. Furthermore, the likelihood of becoming infected from a passing encounter is minimal compared to the likelihood of contracting tuberculosis from a patient with whom an individual has prolonged and close contact; this sort of contact would likely constitute the intimate relationships, or relationships with frequent contact, described by the ethics of care.
Armed with this relational view of autonomy, it is clear that the importance of the rights and liberties usual granted to an individual within more traditional and right's based ethical theories is diminished, and the principle presented by John Stuart Mills that "it is permissible to interfere with the actions of one person to protect others from harm,"59 is greatly enhanced. Therefore, in the situation that a patient has refused to comply with medically prescribed treatments, not due to external circumstances, it is both morally permissible and the duty of the state to act as an arm of the moral community to compel the patient to adhere to treatment. In this situation a utilitarian approach, concentrated on maximizing the intrinsic good of health and using the rule-based principle, is appropriate.
Previously addressed criticisms of the utilitarian ethical approach argued that it forced an over-demanding ideal upon individuals. This view holds that for a state to act in a utilitarian manner ignores individuals' own autonomous choices and preferences, and instead forces them to also act in a way that maximizes the greatest good regardless of whether there is a cost to the individual. However, using an argument presented by Marcel Verweij (2005), I dispute this claim and contend that, within the relational autonomy model, a utilitarian approach by the state is justified and does not present a problem of being over-demanding. One of the arguments against utilitarianism is that within utilitarian theory, to act morally, an individual must maximize welfare even when others do not contribute to this overall good, and that this is unfair. This argument does not apply to governmental action because the state, acting on behalf of the moral community, would, theoretically, treat all non-adherent patients in the same manner, in that all would "contribute" to the greater community. That non-adherent active tuberculosis patients are treated differently than healthy individuals is neither unfair nor unreasonable when autonomy is viewed as relational; preventive efforts made by the state would have the possibility of making vast differences in the health of the community and this is a moral action, especially when an individual is viewed as only one aspect of a vastly interconnected community.
A second argument against utilitarianism is that by taking into account each possible risk (in this case of tuberculosis infection), any action would be paralyzed by the vast number of possibilities. However, one regularly accepts risks with everyday life. The state can still act according to a utilitarian principle without accepting responsibility for every possible threat to the community. If the community "consents to risky actions, or if they deliberately accept risks that [the state] might be able to prevent, this is reason to think [the state is] not obliged to avoid or take away those risks."60 However, the community does not consent to other contagious individuals placing them at risk due to their vector status and non-adherence. Therefore, though a true utilitarian stance would have to consider many risks and factors in order to calculate a risk-benefit ratio, it is possible to limit the scope by confining the duty of the state to taking action against only those with active tuberculosis who are non-adherent to medical treatments. It is the duty of the state to act in a way that promotes the greatest good for the community, and in the presented situation, that entails compelling non-adherent active tuberculosis patients.
The threat of the development of MDR strains of tuberculosis further enhances this argument. That non-adherence not only aids the spread of MDR-TB but also partially causes it, compounds the risk that non-adherent patients pose to the community. This increased risk makes it the duty of the state, once again acting as the moral arm of the community, to diminish this threat. The relational definition of autonomy demands a utilitarian approach on behalf of the state with regard to non-adherent active tuberculosis patients.
Works Cited:
Beauchamp, Tom L. & Childress, James F. Principles of Biomedical Ethics (5th edition). New York; Oxford University Press, 2001.
Chadha, V.K. "Tuberculosis epidemiology in India: a review." International Journal of Tuberculosis and Lung Disease. (2005) 9(10): 1072-1082.
Francis, L. et al. "How Infectious Diseases Got Left Out- and What This Omission Might Have
Meant for Bioethics." Bioethics. (2005) 19(4): 307-322.
Lachmann, Peter J. "Public Health and Bioethics." Journal of Medicine and Philosophy. (1998) 23(3): 297-302.
"Multidrug-Resistant Tuberculosis Fact Sheet." American Lung Association. 2006. 3 June 2006.
"Polio." The Merck Manual. February 2003. 27 May 2006.
Secker, Barbara. "The Appearance of Kant's Deontology in Contemporary Kantianism: Concepts of Patient Autonomy in Bioethics." Journal of Medicine and Philosophy. (1999) 24(1): 43-66.
Selgelid, M. "Ethics and Infectious Disease." Bioethics. (2005) 19(3): 272-289.
Sharma, S.K. et al. "DOTS centre at a tertiary care teaching hospital: lessons learned and future
directions." The Indian Journal of Chest Diseases and Allied Sciences. (2004) 46:251-256.
"Tuberculosis." World Health Organization. 2006. 27 May 2006.
Verweij, Marcel. "Obligatory Precautions Against Infection." Bioethics. (2005) 19(4): 323-335.
End Notes:
1 Chadha, V.K. "Tuberculosis epidemiology in India: a review." International Journal of Tuberculosis and Lung Disease. (2005) 9(10): 1072-1082. (1078)
2 Sharma, S.K. et al. "DOTS centre at a tertiary care teaching hospital: lessons learned and future
directions." The Indian Journal of Chest Diseases and Allied Sciences. (2004) 46:251-256. (255)
3 Chadha, V.K. (1075)
4 Chadha, V.K. (1072)
5 "Tuberculosis." World Health Organization. March 2006. 3 June 2006.
6 "Multidrug-Resistant Tuberculosis Fact Sheet." American Lung Association. 2006. 3 June 2006.
7 Lachmann, Peter J. "Public Health and Bioethics." Journal of Medicine and Philosophy. (1998) 23(3): 297-302.
(298)
8 "Multidrug-Resistant Tuberculosis Fact Sheet." American Lung Association.
9 "Multidrug-Resistant Tuberculosis Fact Sheet." American Lung Association.
10 Chadha, V.K. (1072)
11 Sharma, S.K. (255)
12 Sharma, S.K. (251)
13 "Treatment for Tuberculosis." Center for Disease Control. 20 June 2003. 5 June 2006.
14 Sharma, S.K. (253)
15 "Tuberculosis." World Health Organization. 2006. 27 May 2006.
16 Chadha, V.K. (1079)
17 "Polio." The Merck Manual. February 2003. 27 May 2006.
18 Francis, L. et al. "How Infectious Diseases Got Left Out- and What This Omission Might Have
Meant for Bioethics." Bioethics. (2005) 19(4): 307-322. (307)
19 Francis, L. et.al. (309)
20Selgelid, M. "Ethics and Infectious Disease." Bioethics. (2005) 19(3): 272-289. (273)
21 Selgelid, M. (278)
22 Selgelid, M. (278-279)
23 Selgelid, M.(286)
24 Francis, L. et. al. (308)
25 Francis, L. et. al. (311)
26 Beauchamp, Tom L. & Childress, James F. Principles of Biomedical Ethics (5th edition). New York; Oxford University Press, 2001. (58)
27 Beauchamp, T.L. & Childress, J.F. (79)
28 Francis, L. et al. (312)
29 Francis, L. et al. (312)
30 Francis, L. et al.
31 Selgelid, M. (277)
32 Selgelid, M. (278)
33 Beauchamp, T.L. & Childress, J.F. (355-6)
34Beauchamp, T.L. & Childress, J.F. (357)
35Beauchamp, T.L. & Childress, J.F. (357)
36Beauchamp, T.L. & Childress, J.F. (358)
37Beauchamp, T.L. & Childress, J.F. (360)
38Beauchamp, T.L. & Childress, J.F. (360)
39 Francis, L. et al. (316)
40 Francis, L. et al. (317)
41 Beauchamp, T.L. & Childress,J.F. ( 349)
42 Beauchamp, T.L. & Childress, J.F. (350)
43 Secker, Barbara. "The Appearance of Kant's Deontology in Contemporary Kantianism: Concepts of Patient
Autonomy in Bioethics." Journal of Medicine and Philosophy. (1999) 24(1): 43-66. (45)
44 Secker, Barbara. (46)
45 Secker, Barbara. (47)
46 Beauchamp, T.L. & Childress, J.F. (349)
47Secker, Barbara. (48)
48Secker, Barbara. (53)
49 Beauchamp, T.L. & Childress, J.F. (369)
50 Beauchamp, T.L. & Childress, J.F. (371)
51 Francis, L. et al. (320)
52 Francis, L. et al. (320)
53 Beauchamp, T.L. & Childress, J.F. (341)
54 Beauchamp, T.L. & Childress, J.F. (341)
55 Verweij, Marcel. "Obligatory Precautions Against Infection." Bioethics. (2005) 19(4): 323-335. (323)
56 Verweij, Marcel. (328)
57 Verweij, Marcel. (329)
58 Francis, L. et al. (321)
59 Francis, L. et al. (316)
60 Verweij, Marcel.
Kelsey Whittier graduated from Santa Clara University in 2006. This paper was her senior thesis at SCU and was supported by a Hackworth Grant that she received in the spring of 2005.