Two ways of understanding the notion of autonomy are outlined and discussed in this article, in order to clarify how and if informed consent requirements in biotechnological research are to be justified by the promotion of personal autonomy: A proceduralist conception linking autonomy with authenticity, and a substantivist conception linking autonomy with control. The importance of distinguishing autonomy from liberty is emphasised, which opens for a possible conflict between respecting the freedom and the autonomy of research participants. It is argued (...) that this has implications for how consent requirements based on different criteria of specificity and understanding should be viewed and justified. (shrink)

Medical ethicists conventionally assume that the requirement to employ informed consent procedures is grounded in autonomy. It seems intuitively plausible that providing information to an agent promotes his autonomy by better allowing him to steer his life. However, James Taylor questions this view, arguing that any notion of autonomy that grounds a requirement to inform agents turns out to be unrealistic and self-defeating. Taylor thus contends that we are mistaken about the real theoretical grounds for informed consent procedures. Through analysing (...) Taylor's arguments and showing that they do not stand up to scrutiny, it is possible to defend the view that autonomy is a plausible theoretical basis for informed consent, and to enhance our understanding of the relationship between autonomy and informed consent. (shrink)

In this Introduction, I situate the underlying project “Autonomy and Mental Disorder” with reference to current debates on autonomy in moral and political philosophy, and the philosophy of action. I then offer an overview of the individual contributions. More specifically, I begin by identifying three points of convergence in the debates at issue, stating that autonomy is: 1) a fundamentally liberal concept; 2) an agency concept and; 3) incompatible with (severe) mental disorder. Next, I explore, in the context of decisional (...) capacity assessments, the difficulties to reconcile 1) and 2) with 3) which they at the same time seem to imply. Having clarified the centrality of a cogent notion of mental disorder for addressing these difficulties, I comment on three promising lines of inquiry about the nature and scope of autonomy that emerge from the following chapters. (shrink)

Individuals’ food choices are intimately connected to their self-images and world views. Some dietary choices adopted by consumers pose restrictions on their use of genetically modified food (GMF). It is quite generally agreed that some kind of labeling is necessary for respecting consumers’ autonomy of choice regarding GMF. In this paper, we ask whether the current practice of mandatory labeling of GMF products in the European Union is a sufficient administrative procedure for respecting consumers’ autonomy. Three issues concerning this question (...) are discussed. First, we argue that labeling needs to be accompanied by relevant and understandable information on genetic modification, genetically modified food, and the European practice of GMF labeling. Second, we claim that this type of informing makes it less likely that consumers start to avoid GMF products just because labels make them suspicious of the products. It is further noted that even though some consumers may react to labels this way, labels do not restrict their autonomy of choice. Third, a need for more precise labels indicating the source of the transferred gene is considered. It is found out that such labels are not morally necessary when also non-GMF products are available and no relevant differences (such as differences in price and healthiness) exist between them and GMF products. However, in some other cases more precise labels may be needed for respecting consumers’ autonomy of choice. (shrink)

Services of ethics consultants are nowadays commonly used in such various spheres of life as engineering, public administration, business, law, health care, journalism, and scientific research. It has however been maintained that use of ethics consultants is incompatible with personal autonomy; in moral matters individuals should be allowed to make their own decisions. The problem this criticism refers to can be conceived of as a conflict between the professional autonomy of ethics experts and the autonomy of the persons they serve. (...) This paper addresses this conflict and maintains that when the nature of both ethics consultation and individual autonomy is properly understood, the professional autonomy of ethics experts is compatible with the autonomy of the persons they assist. (shrink)

Ethicists widely accept the notion that scientists have moral responsibilities to benefit society at large. The dissemination of scientific information to the public and its political representatives is central to many of the ways in which scientists serve society. Unfortunately, the task of providing information can often give rise to moral quandaries when scientific experts participate in politically charged debates over issues that are fraught with uncertainty. This paper develops a theoretical framework for an “ethics of expertise” (EOE) based on (...) the notion that scientists have responsibilities to provide information in a way that promotes autonomous decision-making on the part of the public and its representatives. Moreover, insofar as the principle of informed consent has developed in biomedical ethics as a way for physicians to promote autonomous decision-making on the part of their patients, this paper suggests that the informed-consent concept may suggest a set of criteria and guidelines that can help scientists to fulfill their similar ethical responsibilities to the public. In order to illustrate how the resulting EOE could provide practical guidance for scientific experts, the paper examines a case study involving the dissemination of information about the low-dose biological effects of toxic chemicals and carcinogens. (shrink)

Accounts of the value of patient choice in contemporary medical ethics typically focus on the act of choosing. Being the one to choose, it is argued, can be valuable either because it enables one to bring about desired outcomes, or because it is a way of enacting one’s autonomy. This paper argues that all such accounts miss something important. In some circumstances, it is having the opportunity to choose, not the act of choosing, that is valuable. That is because in (...) many situations whether one has, or is denied, that opportunity conveys how one is seen. In particular, it conveys whether or not one is seen as an equal and competent member of society. Adequately recognising this fact has implications for what healthcare professionals should do, ones that require a move away from the current focus on autonomy. The paper draws out these implications by focusing on patients who may struggle to be recognised as competent and equal members of society, and whose autonomy may thus itself sometimes be in question. (shrink)

Recent articles published in this journal have highlighted the shortcomings of individualistic approaches to health promotion, and the potential contributions of relational analyses of autonomy to public health ethics. I argue that the latter helps to elucidate the former, by showing that an inadequate analysis of autonomy leads to misassignment of both forward-looking and backward-looking responsibility for health outcomes. Health promotion programmes predicated on such inadequate analyses are then ineffective, because they assign responsibility to agents whose social environment inhibits their (...) ability to act on such responsibilities; inequitable, because the social barriers to autonomous agency display a socio-economic gradient; and stigmatizing, because they license blaming of individuals for their own poor health without taking into account how reasonable it is to hold these individuals responsible, given the social barriers to autonomy they face. I further sketch how incorporating a relational understanding of autonomy could help to produce health promotion programmes that do not succumb to these difficulties, while avoiding coercive paternalism, exploring potential applications in ecological approaches to health promotion. (shrink)

Felicitas Kraemer draws on the experiences of patients undergoing deep-brain stimulation to propose two distinct and potentially conflicting principles of respect: for an individual's autonomy , and for their authenticity. I argue instead that, according to commonly-invoked justifications of respect for autonomy, authenticity is itself in part constitutive of an analysis of autonomy worthy of respect; Kraemer's argument thus highlights the shortcomings of practical applications of respect for autonomy that emphasise competence while neglecting other important dimensions of autonomy such as (...) authenticity, since it shows that competence alone cannot be interpreted as a reliable indicator of an individual's capacity for exercising autonomy. I draw from relational accounts to suggest how respect for a more expansive conception of autonomy might be interpreted for individuals undergoing DBS and in general. (shrink)

The received view in medical contexts is that informed consent is both necessary and sufficient for patient autonomy. This paper argues that informed consent is not sufficient for patient autonomy, at least when autonomy is understood as a "relational" concept. Relational conceptions of autonomy, which have become prominent in the contemporary literature, draw on themes in the thought of Charles Taylor. I first identify four themes in Taylor's work that together constitute a picture of human agency corresponding to the notion (...) of agency implicit in relational accounts of autonomy. Drawing on these themes, I sketch two arguments against the position that informed consent secures autonomy. The first is that informed consent is an "opportunity" concept whereas autonomy is an "exercise" concept; the second is that informed consent requires merely weak evaluation and not strong evaluation. On Taylor's analysis of agency, strong evaluation is required for agency and for autonomy. (shrink)

In this dissertation I examine ethical issues that concern fertility preservation (FP) technologies for women from a feminist perspective. FP technologies involve the removal, cryopreservation and subsequent storage of reproductive materials for future use. The aim of these technologies is to preserve the option of future genetic reproduction. FP technologies have been developed in the cancer context because infertility is one of the long-term side-effects of many cancers or cancer therapies. Many FP technologies are still experimental, but some technologies are (...) becoming available to healthy women who wish to guard against age-related infertility. Although FP technologies are expanding women’s reproductive options and benefitting some women by satisfying their desires for genetically-related children, these technologies pose numerous physical, emotional and financial risks to women. I maintain that a feminist examination of choice is necessary for the ethical provision of FP technologies within patriarchal contexts. My analysis begins by demarcating two oppressive social biases from one another: namely pronatalism and biologism. I argue that each of these biases can unduly influence women’s reproductive choices about FP technologies. I then consider how these biases might be identified and challenged in the FP decision-making context. I outline an ethical process of informed choice that is equipped to protect patient autonomy when such autonomy is threatened by these biases. I then consider whether the choice to use FP should be available to both women within and without the cancer contexts. I argue that both disease-related FP and age-related FP can be morally permissible. Finally, I consider whether there should be an upper age limit on women’s access to their stored reproductive materials. I argue that age can be morally relevant to reproduction and thus age limits on access to assisted reproduction are morally permissible. I conclude by suggesting how feminist insights might inform policies on FP technologies and related assisted reproductive technologies. In sum, my dissertation shows that a feminist analysis of choices about FP is essential for ensuring the ethical provision of FP technologies. (shrink)

Specifying the moral demands of respect for the autonomy of people with dementia (PWD) in nursing homes (NHs) remains a challenging conceptual task. These challenges arise primarily because received notions of autonomous decision-making and informed consent do not straightforwardly apply to PWD in NHs. In this paper, I investigate whether, and to what extent, the influential account of autonomous decision-making and informed consent proposed by Beauchamp and Childress has applicability and relevance to PWD in NHs. Despite its otherwise practical orientation (...) and suitability for acute care settings, I identify three problems with this account when applied to PWD in NHs. These problems include (1) intentionality as an all-or-nothing condition of autonomous decision-making, (2) construing consent as one-off authorization, and (3) unresolved ambiguities around the primacy of precedent autonomy over best interest considerations. To address these problems, I propose and defend a number of revisions to Beauchamp and Childress’s account. First, I suggest that we consider intentionality as a non-binary criterion of autonomous decision-making. Second, I argue for a model of process consent to overcome the moral inadequacy of construing consent as one-off authorization in NHs. And, to overcome the third problem, I suggest accounting for both precedent and extant autonomy of PWD, considering mandates of precedent autonomy not as prescriptive but as informative, and drawing a less rigid distinction between autonomy considerations and best interest judgements. I conclude that this revised version of Beauchamp and Childress’s account fares better than the original version in capturing relevant autonomy considerations to care for PWD in NHs. (shrink)

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at (...) an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangibl... (shrink)

In this essay, I argue that the daily practice of expert nurses goes far toward enacting the kind of patient autonomy feminist bioethicists envision. Nursing theorists often utilize philosophical theories in their work, but bioethicists have not paid much attention to nursing theory and what it means to be an expert nurse. This is unfortunate because expert nurses do much in their daily practice to make the ideals for autonomy put forth by feminist bioethicists a reality. With this in mind, (...) I bring these two literatures together in what I hope is a fruitful dialogue. (shrink)

In recent years, there has been a considerable increase in the degree of philosophical attention devoted to the question of the morality of offering financial compensation in an attempt to increase the medical supply of human body parts and products, such as plasma. This paper will argue not only that donor compensation is ethically acceptable, but that plasma donors should not be prohibited from being offered compensation if they are to give their informed consent to donate. Regulatory regimes that prohibit (...) donor compensation thus unethically prevent the typical donor from being able to give her informed consent to donate. (shrink)

Recent criticism of the role of respect for autonomy in bioethics has focused on that principle's status as ‘dogma’ or ‘ideology’. I suggest that lying beneath many applications of respect for autonomy in medical ethics are some influential dogmas — propositions accepted, not as explicit premises or as a consequence of reasoned argument, but simply because moral problems are so frequently framed in such terms. Furthermore, I will argue that rejecting these dogmas is vital to secure and protect an autonomy (...) worthy of respect. The concept of autonomy that is widely applied in clinical ethics emphasises decision-making competence, at the expense of considering the authenticity of those decisions. Respect for such autonomy is interpreted in largely synchronic and individual terms — concerned with the isolated decisions of individual agents — and thus neglects the diachronic and social dimensions of many moral dilemmas arising in the health care context. I will examine how these unwritten rules lead to an impoverished understanding of respect and a systematic neglect in bioethics of certain kinds of ethical consideration, and draw on insights from feminist and communitarian work on autonomy to sketch an alternative approach to understanding respect, modelled on the norms of respectful conversation — a respect that is firstly concerned with engaging with the another as a potential giver and bearer or reasons, and working with them to promote both individual and social flourishing. (shrink)