2. LITERATURE REVIEW
2.1 Conventional Approaches to Autonomy in Philosophy, Ethics and Bioethics
2.1.4 The Principle of Autonomy: Challenges Posed by Contemporary Ethical Issues
It has been argued that the conceptual analytic method that distinguishes bioethics does not provide workable solutions in real-world ethical decision-making: there is such a gap between
conventional bioethics and what is actually taking place in clinical settings2 that one cannot simply accept applied moral philosophy as medical ethics (Hedgecoe, 2004). Ethical decision making is a complex process. Advances in medical research are presenting bioethics with situations where applying the right principle from among those available is grossly insufficient.
The individualistic paradigm of respect for autonomy is problematic in research and clinical reality – not only are patients and research participants encumbered with family and other social responsibilities; clinicians and researchers are also linked in complex institutional networks (O‟Neill, 2002).
An extension of this is “the difficulty physicians have in moving beyond individual clinical decisions to an understanding of the collective consequences of those decisions, and…the complex and powerful set of social relations that shape decisions when they are made”
(Zussman, 1997, p. 183). Moreover, relying on respect for autonomy that has essentially been reduced to respect for informed consent requirements, limits personal autonomy in clinical settings to freedom to refuse what others offer (O‟Neill, 2002). In bioethical theory, the principle of autonomy may be an ideal central value; in practice, adherence to this principle at the expense of others may fail to give sufficient guidance in ethically complex situations, where there are many potential resolutions and potentially no solutions. While respect for persons, doing good, protecting justice and avoiding harm may not be far from our minds when approaching ethical problems, these principles are not necessarily the best or most appropriate means of resolving all bioethical dilemmas (Harris, 2003).
2 It is acknowledged that clinical settings and research settings are not equivalent, nor are ethical practices within each of these contexts necessarily interchangeable. However, for the purposes of this study, examples of applied ethics in both of these settings were included in the discussion to demonstrate the problems associated with applying traditional notions of principled autonomy in clinical as well as in research contexts.
In clinical practice, there are many examples of where informed consent and rigid attempts to uphold individual autonomy fail. Ethically complex problems posed by termination of treatment dilemmas (Bedell & Delbanco, 1984; Hanson, Danis, Mutan & Keenan, 1984; Jayes,
Zimmerman, Wagner, Draper & Knaus, 1993; Wren & Brody, 1992), issues arising in adult intensive care units (Zussman, 1992), and in both general medicine and general surgery (Lidz et al., 1983) are just some of the situations in which adherence to principles of autonomy offer limited options for adequate ethical resolution. Many informed consent applications are extraordinarily complex – how, for example, one speaks for an unborn child, or a comatose patient – and yet, the principles of informed consent remain remarkably straightforward and simple (Zussman, 1997). Similar failures of applications of autonomy in informed consent have been reported in research settings, examples of which are explored in the following discussion.
The current crisis of the autonomy model is intensified by new initiatives in research that are challenging the dominance of standard notions of autonomy in biomedical ethics. Ethical considerations around the technological advances in genetic medicine, for example, are according greater value to the principles of beneficence, nonmaleficence and justice, and necessitating a re-evaluation of autonomy in relation to these competing ethical principles (Green, 1999). The main reason for this is that genes transcend individuals and genetic medicine and research are likely to have an impact on persons other than the patient or research
participant. “By definition, human genetics pertains to relatedness rather than separateness”
(Mullen, 1995 in Green, 1999, p. 64). For example, the right to autonomy and autonomous choices for all individuals is contested by arguments justifying legal authorization of compulsory
participation in genetic screening and counselling programmes. Such arguments are based on the premise that it is the duty of society to minimize the risk of unambiguous harm to individuals who may be unable to protect themselves (Jonsen, Veatch & Walters, 1998) – a premise that espouses and upholds the principles of nonmaleficence and beneficence over the principle of respect for autonomy. The conflict between ethical principles is further highlighted in cases where individuals refuse to give (voluntary) consent for the disclosure of genetic screening results to relatives who may be at risk for developing the disease.
Another area where the primacy of autonomy is currently attenuated is in the unique ethical issues generated by the HIV/AIDS pandemic. An unprecedented, ethically-justified compromise of individual autonomy and confidentiality, for example, is demonstrated by the obligation of health professionals to inform identifiable partners of an HIV-positive person‟s test results if the latter is unwilling to disclose his or her status autonomously (Barrett, 2000; HPCSA, 2002;
Shalowitz & Miller, 2005). HIV/AIDS research has also highlighted the inadequacies and insensitivity of conventional approaches to informed consent – and its procedural respect for autonomy – in developing countries (Lindegger & Richter, 2000).
The limitations of principlism are further exposed by issues relating to organ trade and genetic manipulation. Callahan (2003) proposes that, in these situations, principlism cannot offer clear solutions that weigh up harms to individuals, to society, to the greater good, to future
generations, against benefits to the individual in the immediate present, and argues that these are examples of where a communitarian perspective might offer more effective recourse. Similarly, deference to autonomy at the expense of alternative approaches has faced serious moral
objections which prove the insufficiency of the principle of autonomy in ethical challenges presented by resource allocation (Veatch, 1996) and by egg donation (O‟Neill, 2002). Gaylin (1996), too, presents a powerful argument against a rigid defense of autonomy, which
is dangerous not just because it preempts other values such as justice and virtue, but also because it interferes with more sophisticated concepts of freedom. It is hard to imagine a paranoid schizophrenic living in the streets of New York, any more than a drug addict as being a „free agent‟ (Gaylin, 1996, p. 45).
The ethical issues accompanying the development of new reproductive technologies are another critical arena highlighting the limitations of conventional applications of autonomy principles.
Not only are genetic counselling, in-vitro fertilization and abortion redefining the meaning of motherhood and the moral value of mother-and-child, they are also necessitating the
reexamination and reformation of biomedical ethics and its principles. Strict adherence to principles of individual autonomy frames ethical issues in the contested domain of abortion as conflict between maternal and foetal rights, a conceptualization which offers little guidance in reality. When maternal rights are pitted against the rights of the foetus, the problem becomes one of competition in which either the mother or the child wins. And, most often, the foetus takes precedence, rendering the pregnant woman virtually invisible (Sherwin, 1992b). If the frame of guidance is expanded from principles of autonomy to moral conceptions of personhood, to the relational space that mother and foetus share, the lens of ethical guidance shifts from two independent beings whose moral claims are in opposition to one another, to the relationship between the foetus and the woman (Gibson, 2004).
Harris (2000) explores the limitations of conflict- and principle-based perinatal ethics and proposes an alternative model of pregnancy. Here, too, the focus is shifted from the mutually exclusive needs of the pregnant woman and her foetus, to their mutual needs. This model also
avoids many of the pitfalls of traditional ethical formulations - their tendency to neglect gender-specific models of moral reasoning, their implicit assumptions that application of universal principles of autonomy and beneficence results in objective ethical solutions, and their failure to account for the ways that projecting foetal needs perpetuates social inequalities (Harris, 2000, p. 786).
This view is shared by other theorists who argue that traditional enactments of autonomy neglect the vital importance of relationships, as well as the woman‟s own embodied experience and knowledge of her pregnancy (Goldberg, 2003).
Examination of the principle of autonomy in psychiatric settings has also called into question the skewed focus of conventional conceptions on personal liberty. Research with psychiatric patients has attended to such ethical issues as the competence of these patients to consent to research, and focused on ways of guaranteeing that individuals give such consent as autonomously as possible.
Narrowing the focus to questions of autonomy has the potential to ignore the broader circumstances of these potential participants and, at worst, denies their suffering or places responsibility for the suffering solely on the „autonomous‟ sufferers (Martin, 2001). Fisher (2003) also points out the inadequacy of the autonomy model in research involving adults with mental retardation and developmental disabilities. After reviewing the current theory and research on informed consent policies in such research settings, she argues that “adults with mental retardation, like all persons, are linked to others in relationships of reciprocity and dependency” (Fisher, 2003, p. 29). She goes on to explore how a relational ethics approach can counter the inadequacies of consent procedures with this vulnerable population by shifting the
focus away from individual autonomy to the goodness of fit between the decisional capacity of participants and the specific consent context (Fisher, 2003).
Such challenges to the pride of place held by the principle of autonomy are paralleled in contemporary bioethical debates about suicide and euthanasia. One ethical view on this issue holds that autonomy entails individual judgements about what constitutes unbearable life, and should have priority over competing values; others argue that “suicide (in any form) can never be a rational response to the conditions of life, (and) that society‟s interest in life overrides even an autonomous desire to die” (Teays & Purdy, 2001, p. 373). Daniel (2001) contends that the ethical and legal authorization of euthanasia would sanction a view of autonomy that permits individuals to entreat others, including such institutions as medicine, to aid them in their pursuit of the good life, regardless of the potentially harmful risk that this poses to the common good. Here, again, the principles of beneficence and nonmaleficence pose a significant challenge to the apparent dominance of the principle of autonomy. What each of the issues discussed above seem to highlight is that the ideology of autonomy as the freedom to make choices and to follow one‟s own preferences is potentially, with respect to the relations between individuals, inadequate (Ter Meulen, 2001). In the remainder of this literature review, this narrow conception of the
autonomy ideal will be critically reviewed and a broader understanding of autonomy will be presented - one that recognizes how specific decisions are embedded within a complex set of relations, contexts and policies that constrain (or promote) an individual‟s ability to exercise autonomy with respect to any particular choice. As such, notions of the self and the ethical orientations of justice and care will be discussed. Ultimately, the question is:
How does (bioethics) reconcile the clearly immense differences in the social and personal realities of moral life with the need to apply a universal standard to those fragments of experience that can foster not only comparison and evaluation but also action?
(Kleinman, 1999, p. 70 in Hedgecoe, 2004, p. 126).