Much discussion of decision-making processes in medicine has been patient-centred. It has been assumed that there is, most often, one patient. Less attention has been given to shared decision-making processes where two or more patients are involved. This article aims to contribute to this special area. What conditions need to be met if decision-making can be said to be shared? What is a shared decision-making process and what is a shared autonomous decision-making process? Why make the distinction? Examples are drawn (...) from the area of new reproductive medicine and clinical genetics. Possible gender-differences in shared decision-making are discussed. (shrink)

A large proportion of nursing home residents in developed countries come from ethnic minority groups. Unmet care needs and poor quality of care for this resident population have been widely reported. This systematic review aimed to explore social conditions affecting ethnic minority residents' ability to exercise their autonomy in communication and care while in nursing homes. In total, 19 studies were included in the review. Findings revealed that ethno‐specific nursing homes create the ideal social condition for residents to express their (...) care needs and preferences in a language of choice. In nonethno‐specific nursing homes, staff cultural competence and nursing home commitment to culturally safe care are crucial social conditions that enable this group of residents to fulfil their autonomy in communicating and in participating in their care. In contrast, social conditions that undermine residents' ability to express their care needs and preferences include low levels of staff cultural awareness and cultural desire, negative attitudes towards residents and limited organisational support for staff to improve culturally responsive and culturally safe care. In conclusion, it is important to optimise the social conditions to support ethnic minority residents to communicate their care needs and preferences. (shrink)

The World Health Organization has in the last decade identified mental health as a priority for global health promotion and international development, to be targeted through promulgation of evidence-based medical practices, health systems reform, and respect for human rights. Yet these overlapping strategies are marked by tensions as the historical primacy of expert-led initiatives is increasingly subject to challenge by new social movements — in particular, disabled persons’ organizations. These tensions come into focus upon situating the WHO’s contributions to the (...) analysis of global mental health in light of the negotiation and early stages of implementation of the Convention on the Rights of Persons with Disabilities, particularly as it applies to persons with mental disabilities. (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)

A standard view in ethics is that ethical issues concern a different range of human concerns than does politics. This essay goes beyond the long-standing dispute about the extent to which applied ethics needs a commitment to ethical theory. It argues that regardless of the outcome of that dispute, applied ethics, because it presumes something about the nature of authority, rests upon and is implicated in political theory. After internalist and externalist accounts of applied ethics are described, “mixed” approaches are (...) considered that contain inevitable political dimensions. A feminist alternative, Walker’s metaethic of responsibility, shows that authority is best understood as relational and that situations of unequal power are therefore often the places where applied ethics arises. Furthermore, in a democratic society, commitments to democracy should shape the account of authority, and, thus, the nature of applied ethics as well. (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 recent years, informed consent has been suggested as a way to deal with risks posed by engineered nanomaterials. We argue that while we can learn from experiences with informed consent in treatment and research contexts, we should be aware that informed consent traditionally pertains to certain features of the relationships between doctors and patients and researchers and research participants, rather than those between producers and consumers and employers and employees, which are more prominent in the case of engineered nanomaterials. (...) To better understand these differences, we identify three major relational factors that influence whether valid informed consent is obtainable, namely dependency, personal proximity, and existence of shared interests. We show that each type of relationship offers different opportunities for reflection and therefore poses distinct challenges for obtaining valid informed consent. Our analysis offers a systematic understanding of the possibilities for attaining informed consent in the context of nanomaterial risks and makes clear that measures or regulations to improve the obtainment of informed consent should be attuned to the specific interpersonal relations to which it is supposed to apply. (shrink)

This paper discusses Confucian notions of moral autonomy and moral agency that do not follow strict and ideal notions of autonomy that one can find in many Western theories of moral philosophy. In Kantian deontology, for example, one's autonomy, specifically one's rational will to follow universal moral rules, is a necessary condition of moral agency and moral responsibility. In Confucian moral philosophy, however, this type of strict moral autonomy is rarely observed. A Confucian moral agent is often depicted as a (...) partially heteronomous individual who often accepts and follows others' moral authority and considers external contingencies in her moral deliberations. Yet active moral agency is maintained in Confucian philosophy. In this paper, I will explain and analyze a partially heteronomous but active form of moral agency in Confucian moral philosophy. First, I will survey different notions of moral autonomy and explore philosophical theories of partial autonomy and heteronomy. Second, I will discuss, on the basis of interactive, responsive, and situated notions of the self, how Confucian moral agency can be explained without strict standards of autonomy. In Confucianism, morality or virtuosity reflects the relational, responsive, and situated nature of human being that resonates with other human beings and their environmental contingencies. Mencius, for example, acknowledges and discusses interactive or relational nature of moral action and the dependency of the moral self on external conditions of life without giving up active moral effort and full moral responsibility. Third, based on my analysis of moral autonomy and responsibility in early Confucian philosophy, I will argue that Confucian moral philosophy provides a unique way of understanding moral agency, not through self-enclosed independency but through relational and interactive interdependency of communal agency. (shrink)

In this essay, I argue that pronatalism—a social bias in favor of gestational motherhood—and geneticism—a social bias in favor of genetic motherhood—are conceptually and operationally distinct social forces that influence some women's reproductive decision making. Each of these social forces shapes the reproductive landscape, relates differently to women's identities, and causes different social stigmatization and harm. Pronatalism and geneticism warrant feminist concern because they can compromise some women's reproductive autonomy and well-being. I suggest that combating pronatalism and geneticism will require (...) different sets of media, policy, education, and health care practice strategies. (shrink)

Obesity is a public health problem influenced by behavioral patterns that span an ecological spectrum of individual-level factors, social network factors and environmental factors. Both individual and environmental approaches necessarily include significant influences from social networks, but how and under what conditions social networks influence behavior change is often not clearly mapped out either in the obesity literature or in many intervention designs. In this paper, we provide an analysis of recent empirical work in obesity research that explicates social network (...) influences on eating behaviors. We argue that a relational rather than individualistic view of personhood should help us better understand the content and context of social network relations that inform health behavior choices. We introduce the concept of ‘identity-constitutive affiliations’ as the glue that binds these social relationships together. Finally, we outline the implications for public health ethics in the development of effective interventions to address overweight and obesity, leveraging the content and context of social network ties to reinforce healthy (or alter unhealthy) eating. More complex treatment of positive and negative behaviors stemming from social network connections should lead to more comprehensive theoretical models of health behavior change and more effective public health interventions. (shrink)

In this paper, I consider how trust affects the decisions of men who have sex with men (MSM) around using pre-exposure prophylaxis (PrEP) as HIV prevention in their sexual and romantic relationships, and how the use of PrEP affects their relationships with healthcare providers. MSM have to trust their sexual and romantic partners as well as their healthcare providers for PrEP to be successful as a relatively new HIV prevention strategy. This trust includes both interpersonal trust and institutional trust and (...) it is complicated by different kinds of relationship dynamics and the history of prejudice against MSM in healthcare institutions. (shrink)

Many popular artificial intelligence (AI) ethics frameworks center the principle of autonomy as necessary in order to mitigate the harms that might result from the use of AI within society. These harms often disproportionately affect the most marginalized within society. In this paper, we argue that the principle of autonomy, as currently formalized in AI ethics, is itself flawed, as it expresses only a mainstream mainly liberal notion of autonomy as rational self-determination, derived from Western traditional philosophy. In particular, we (...) claim that the adherence to such principle, as currently formalized, does not only fail to address many ways in which people’s autonomy can be violated, but also to grasp a broader range of AI-empowered harms profoundly tied to the legacy of colonization, and which particularly affect the already marginalized and most vulnerable on a global scale. To counter such a phenomenon, we advocate for the need of a relational turn in AI ethics, starting from a relational rethinking of the AI ethics principle of autonomy that we propose by drawing on theories on relational autonomy developed both in moral philosophy and Ubuntu ethics. (shrink)

An increasingly popular solution to the anti-scientific climate rising on social media platforms has been the appeal to more critical thinking from the user's side. In this paper, we zoom in on the ideal of critical thinking and unpack it in order to see, specifically, whether it can provide enough epistemic agency so that users endowed with it can break free from enclosed communities on social media (so called epistemic bubbles). We criticise some assumptions embedded in the ideal of critical (...) thinking online and, instead, we propose that a better way to understand the virtuous behaviour at hand is as critical engagement, namely a mutual cultivation of critical skills among the members of an epistemic bubble. This mutual cultivation allows members within an epistemic bubble (in contrast, as we will show, with the authority-based models of epistemic echo chambers) to become more autonomous critical thinkers by cultivating self-trust. We use the model of relational autonomy as well as resources from work on epistemic self-trust and epistemic interdependence to develop an explanatory framework, which in turn may ground rules for identifying and creating virtuous epistemic bubbles within the environments of social media platforms. (shrink)

A few years ago, the New York City Department of Health introduced a public health campaign entitled “Cut Your Portions, Cut Your Risk”, a series of posters in which images of food in increasingly large portion sizes appear. In one example, three packets of french fries are featured; in another, cheeseburgers are shown. In a red box in each, the text, in large, all-capital letters in English and Spanish, reads “Portions have grown,” and, below this, in all capitals, “so has (...) obesity, which can lead to many health problems” or “so has type 2 diabetes, which can lead to amputations.” Beneath the food, the posters admonish, again in all-capital... (shrink)

The American Journal of Bioethics, Volume 12, Issue 6, Page 44-45, June 2012.

Abortion has been legal in the United States since the Supreme Court's landmark 1973 ruling in Jane Roe, et al. v. Henry Wade, District Attorney of Dallas County. Over the past forty years, however, access to abortion has diminished as states have devised creative ways to regulate and restrict the abortion procedure. In the first half of 2011, state legislators introduced a record number of antiabortion bills. In 19 states alone, 80 laws ranging from mandatory counseling and waiting periods to (...) gestational laws and bans on insurance coverage were passed, a legislative testimony to the incremental successes of the antiabortion campaign. Since 2011, the rapid increase in restrictive... (shrink)

This paper presents a reconceptualization of autonomy as the iterative realization of one’s capacity for “effective self-definition,” that is, possessing a sense of clarity and coherence in “who I am,” and exercising the decisional and volitional ownership over my life that this engenders. This process is “Relational,” wherein people’s interpersonal interactions have a deep and pervasive influence on their ability to recognize and exercise their autonomous capacities. This Relational understanding of autonomy is contextualized within the field of addiction rehabilitative practice. (...) Addiction is a pathology that progressively and insidiously undermines autonomy – producing a number of negative consequences that present themselves along a “continuum of pervasiveness.” In order to most fully foster rehabilitation, therapeutic alliances should to be attentive to facilitating autonomy’s dialogical antecedents. Here, interpersonal recognition can help clients to more fully recognize their own autonomous resources – enabling them to embark on their rehabilitative journey and achieve broader autonomous living. This paper concludes by proposing ways that practitioners can manifest their recognition of their clients’ autonomy within the therapeutic encounter. (shrink)

Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated with improved outcomes; yet, despite (...) over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%).Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process. (shrink)

In the biomedical and behavioral sciences, it is widely recognized that researchers conducting studies involving human participants must respect the autonomy of research subjects. There is significant debate in the clinical research ethics and bioethics literatures about what it means for an individual to be autonomous. According to proponents of the Liberal Conception of Autonomy, an autonomous person is an agent who has interests and opinions and the capacity to deliberate about them. In contrast, proponents of the Relational Conception of (...) Autonomy argue that because humans are social creatures, autonomy is a relational concept and ought to be recognized as such by medical professionals. In this article, I argue that the LCA/RCA debate is flawed, and that the notion of freedom as non-domination, rather than autonomy, ought to be adopted for biomedical research ethics policies regarding informed consent and research agenda-setting. I then argue that this view of freedom should also be adopted... (shrink)

Self‐trust is essential to the well‐being of people with chronic illnesses and those who care for them. In this exploratory essay, we draw on a trove of health narratives to catalyze examination of this important but often overlooked topic. We explore how self‐trust is impeded at both personal and structural levels, how it can best be nourished, and how it is related to self‐advocacy. Because people's ability to trust themselves is intrinsically linked to the trust others have in them, we (...) pay particular attention to the role that allies such as clinical professionals play in the development of self‐trust, highlighting the importance of eliciting patient narratives, of curious listening, and of compassionately raising questions. We also contrast the self‐trust paradigm with that of self‐management, which tends to replace the former's attention to patients’ experiences, abilities, qualities, or judgments with a professionally dominated discourse dedicated to addressing illness through behavior changes prescribed by clinicians. We close with a call to action, exhorting readers to focus on supporting self‐trust in health care settings and on creative research in this critical yet heretofore underrepresented domain. (shrink)

As in other areas of medical practice, relatives accompany patients to genetic consultations. However, unlike in other areas, the consultations may be relevant to the relatives’ health because they may be at risk of developing the same genetic condition as the patient. The presence of relatives in genetic consultation may affect the decision‐making process and it raises questions about the perception of patient autonomy and the way it is practiced in genetics. However, these issues have not been examined in previous (...) empirical studies. This article aims to fill this gap by reporting findings from a qualitative study with clinicians working in the area of inherited breast cancer. The findings indicate that family presence has an impact on the patient's decisions to undergo genetic testing and preventative operations when she is diagnosed as a carrier. The findings further indicate that, unlike in other areas of medical practice, blood relatives who are present in consultations are perceived by clinicians as patients or potential patients, and this in turn increases their involvement in discussions in the consultation room. Finally, the findings indicate that in genetics, a relational approach to autonomy is applied. Decisions are made in a social context, where the relatives’ views are heard and taken into account. The findings suggest that the conventional bioethical approach to autonomy, which perceives the decision‐making unit as comprising a clinician and an individual patient, is challenged in genetics. The findings thus suggest that bioethicists, lawyers and policy‐makers should consider whether this individualistic approach is still valid and applicable. (shrink)

Despite extensive theoretical debate, concrete efforts to overcome paternalism and unbalanced power relations between patients and doctors have produced limited results. In this article, I examine...

The global increase in patients with chronic conditions has led to increased interest in ethical issues regarding such conditions. A basic biomedical principle—respect for autonomy—is being reexamined more critically in its clinical implications. New accounts of this basic principle are being proposed. While new accounts of respect for autonomy do underpin the design of many public programs and policies worldwide, addressing both chronic disease management and health promotion, the risk of applying such new accounts to clinical setting remain understudied. However, (...) the application of new accounts of respect for autonomy to clinical settings could support disrespectful attitudes toward or undue interference with patients with chronic conditions. Reconsidering autonomy and respect using Kantian accounts, this paper proposes respect for persons as an alternative basic bioethical principle to respect for autonomy. Unlike the principle of respect for persons in the Belmont Report, our principle involves respecting any patient’s decisions, behaviors, emotions, or life-style regardless of his or her “autonomous” capabilities. Thus, attitudes toward patients should be no different irrespective of the assessment of their decisional or executive capabilities. (shrink)

Most people who defend physician-assisted death (PAD) endorse the Joint View, which holds that two conditions—autonomy and welfare—must be satisfied for PAD to be justified. In this paper, we defend an Autonomy Only view. We argue that the welfare condition is either otiose on the most plausible account of the autonomy condition, or else is implausibly restrictive, particularly once we account for the broad range of reasons patients cite for desiring PAD, such as “tired of life” cases. Moreover, many of (...) the common objections to an Autonomy Only view fail once we understand the extent of the autonomy condition’s requirements—in particular, the importance of one’s values for autonomous choices. If our view is correct, then the scope of permissible PAD is broader than is currently accepted in both the philosophical literature and the law, and therefore poses an important challenge to this widely accepted view on justified PAD. (shrink)

In this paper I look at various ways that interpersonal and social relations can be seen as required for autonomy. I then consider cases where those dynamics might play out or not in potentially paternalistic situations. In particular, I consider cases of especially vulnerable persons who are attempting to reconstruct a sense of practical identity required for their autonomy and need the potential paternalist’s aid in doing so. I then draw out the implications for standard liberal principles of paternalism, specifically (...) in clinical or therapeutic situations. The picture of potential paternalism that emerges here is much more of a dynamic, interpersonal scenario rather than a case of two separate individuals making decisions independent of each other. (shrink)

One of the ethical issues that has been raised recently regarding emerging neurotherapies is that people will be coerced explicitly or implicitly in the workplace or in schools to take cognitive enhancing drugs. This article builds on this discussion by showing how the law may pressure people to adopt emerging neurotherapies. It focuses on a range of private law doctrines that, unlike the criminal law, do not come up very often in neuroethical discussions. Three doctrines—the doctrine of mitigation, the standard (...) of care in negligence, and child custody determinations in family law—are addressed to show how the law may pressure people to consent to treatment by offering a choice between accepting medical treatment and suffering a legal disadvantage. The doctrines considered in this article apply indirect pressure to submit to treatment, unlike court-ordered medical treatment, which applies direct pressure and is not addressed here. The outcome of this discussion is to show that there is a greater range of social pressures that may encourage the uptake of novel neurotherapies than one might initially think. Once treatments that were developed and offered with therapeutic benefits in mind become available, their existence gives rise to unintended legal consequences. This certainly does not mean we should cease developing new therapies that may be of tremendous benefit to patients, but it does raise some questions for physicians and for legal policy-makers. How should physicians, who are required by medical ethical principles to obtain valid consent to treatment, react to a patient’s reluctant consent that is driven by legal pressure? From the legal policy perspective, are our legal doctrines satisfactory or should they be changed because, for example, they unduly promote the collective interest over individual freedom to reject medical treatment or because they channel us toward economically efficient treatments to the detriment of more costly but potentially superior approaches of dealing with behavioural problems? (shrink)

Case study: while on placement at a mental health day centre I was assigned to act as key-worker to Mr X, a working-class white man in his early 40s who has been diagnosed with several psychiatric disorders. Mr X also experiences poor physical health. Mr X has been diagnosed as ?having? obsessive compulsive disorder, major depressive disorder, anger management disorder, Tourette's syndrome and paranoia. He has also been diagnosed with fibromyalgia. For all these, he daily takes a powerful cocktail of (...) anti-depressants, mood-stabilizers, anti-psychotics and pain killers. From his file I noted that he had been discharged from the local community psychiatric team, so he no longer had regular and unproblematic access to either a psychiatrist or social worker. He had been receiving anger management therapy (AMT), but his attendance had been sporadic. Mr X had, he claimed, no real friends, or, as he put it, ?just mere acquaintances?. Mr X lives alone with his mother. Mr X was a new member at the day centre but had had a long career as a mental health service user (owing to his angry behaviours he had been ?asked to leave? his previous day centre). The stated and overt purpose of our relationship was to collaborate towards ameliorating his situation. This work more commonly consisted of offering emotional and practical support, but, when first assigned Mr X, I was told by my practice assessor that eventually I would be required to carry out a risk assessment of him. So, for the purposes of this essay, I will focus on the ethical problems and dilemmas I encountered in the progression leading towards, and the actual process of carrying out, an assessment of the supposed risk that Mr X may pose either to himself, others or both. (shrink)

The American Journal of Bioethics, Volume 12, Issue 7, Page 59-61, July 2012.

As scholars integrate empirical approaches to ethical questions in healthcare, relational autonomy theory must inform research design and change practice. Qualitative approaches are well suited to issues where patient values play a central role, and they can be combined with relational autonomy theory to investigate the factors influencing autonomy-rich experiences. This paper draws upon my experience conducting bioethics research related to clinical trial decision-making to develop a systematic method for applying relational autonomy as a theoretical lens to qualitative health research. (...) The resultant practical guide utilizes Susan Sherwin’s theory of relational autonomy and presents an empirical method responsive to autonomy-relevant questions. (shrink)

The nature and role of the patient in biomedicine comprise issues central to bioethical inquiry. Given its developmental history grounded firmly in a backlash against 20th-century cases of egregious human subjects abuse, contemporary medical bioethics has come to rely on a fundamental assumption: the unit of care is the autonomous self-directing patient. In this article we examine first the structure of the feminist social critique of autonomy. Then we show that a parallel argument can be made against relational autonomy as (...) well, demonstrating how this second concept of autonomy fails to take sufficiently into account an array of biological determinants, particularly those from microbial biology. Finally, in light of this biological critique, we question whether or to what extent any relevant and meaningful view of autonomy can be recovered in the contemporary landscape of bioethics. (shrink)

There is a strong presumption that mental disorder injures a person's autonomy, understood as a set of capacities and as an ideal condition of agency which is worth striving for. However, recent multidimensional approaches to autonomy have revealed a greater diversity in ways of being autonomous than has previously been appreciated. This presumption, then, risks wrongly dismissing variant, neuro-atypical sorts of autonomy as non-autonomy. This is both an epistemic error, which impairs our understanding of autonomy as a phenomenon, and a (...) moral error, which withholds recognition and respect that autonomous agents are due. I argue that careful attention to the different 'shapes' of agent's autonomy reveals that there are indeed distinctive kinds of neuro-atypical autonomy that are widely mistaken for non-autonomy. This project argues for two propositions. First, that there is a kind of autonomy, with a distinctive shape and texture, available to bipolar agents. This is a variant sort of autonomy, but not a defective or deficient sort. It is the ideal of autonomy that it is worth bipolar agents striving for, given the range and intensity of experiences that they will have to confront. Whilst bipolar autonomy will look unlike more neurotypical kinds of autonomy, it continues to be owed recognition. The second proposition is that we should understand the ideal of autonomy to be both pluralist and highly context sensitive. Given the range of starting points from which agents will strive to an ideal of autonomy, there will be some variation in the ideals worth striving for. The variation in ideals will reflect the existential realities they are local to. Theory of autonomy must be adapted to recognise bipolar, and other neuro-atypical, kinds of autonomy, and to reflect this wider pluralism. These propositions will be argued for with careful attention to the experiences and agency of people living with bipolar, or related, disorders. Understanding the ways that manic or depressive episodes, and the shifts between them, alter and apply pressure to our agency will inform an account of the distinctively bipolar autonomy that can be built on top of it. (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)

Justice is a key guiding ethical principle in bioethics. When justice is addressed in bioethics the focus is primarily on the fair distribution of resources, that is, distributive justice. In this thesis, I argue that a distributive conception of justice is unable to adequately address many of the relevant issues of justice within bioethics. These issues are better understood and addressed using a social conception of justice. Social justice is concerned with ensuring that the norms and rules of social structures (...) are fair and equitable. I argue that social and distributive justice are not only compatible, but also complementary. As a result, both conceptions of justice need to be applied to bioethical issues if we are to achieve a truly just outcome. As a case study, I apply this analysis to the controversial issue of the inclusion of pregnant women in clinical research trial. (shrink)

This in-depth qualitative study considered how women from two different generations came to understand birth in the context of their own experience but also in the milieu of other women’s stories. For the purposes of this thesis the birth story encompassed personal oral stories as well as media and other representations of contemporary childbirth, all of which had the potential to elicit emotional responses and generate meaning in the interlocutor. The research utilised a hermeneutic phenomenological approach underpinned by the philosophies (...) of Heidegger and Gadamer. This methodology allowed the significance of the experience of engaging with stories to be grasped, and in-depth insights into the meanings and lived experience for women of the phenomenon to be made. Twenty participants were purposively selected, recruited and interviewed. In phase one ten women who were expecting their first baby in 2013 were recruited in order to explore how they understood birth prior to the event and in the light of other women’s stories. Birth stories were revealed as one of many ‘voices’ offering ‘advice’ to women about birth. The women also talked about classes they had attended, books they had read, websites and online forums they had accessed, as well as television programmes and films they had watched. The conversations with the first cohort of women led to further questions about whether the information gleaned from media and virtual birth story mediums creates meaningful knowledge about birth for women. The second phase evolved from this thinking. In phase two interviews with an older cohort of women were undertaken to determine whether women from a different era were more able to translate knowledge into meaning. This was based on the belief that, for this generation of women, stories were mediated by personal contact and not though virtual technologies as in the previous generation of women. Phenomenological conversations with the participants took place in the iterative circle of reading, writing and thinking. This revealed the experience of ‘being-in-the-world’ of birth for the two generations of women and the way of communicating within that world. From a Heideggerian perspective, the birth story was constructed through ‘idle talk’ and took place across a variety of media accessed by women, as well as through face to face conversations. Five central and interrelated interpretive findings emerged. Firstly the stories the women engaged with, had a significant role to play in their understanding and expectations of birth. The ‘norm’ as portrayed in the stories circulating in 2013, for instance, was one which perpetuated what one participant described as the ‘drama of birth’. Secondly, the modern ‘landscape’ of birth created and perpetuated fear of childbirth for many of the women. The stories shared were lacking in detail about women’s lives, and did not necessarily help them to become ‘knowers’ and gain wisdom about birthing. Thirdly, the women birthing in the present day were overloaded with information amassed in an attempt to manage their anxieties about birth as well as to fit the role of the informed patient, and demonstrate their competency as mothers. Fourthly the cultural and spiritual significance of birth was not shared in the circulating stories in either generation. Finally, some of the birthing women felt secure in the ‘system’ of birth as constructed, portrayed and sustained in the stories widely circulated. The data revealed that the lifeworld of birth being sustained in stories was one of product and process, concentrating on the stages and progression of labour and the birth of a healthy baby as the only significant outcome. Taken as a whole this thesis revealed that the information gleaned from birth stories did not in fact create meaningful knowledge and understanding about birth for these women. The study is unique in that no other published research has explicitly identified the premise of the ‘modern birth story’ or the notion of ‘idle talk’ in relation to childbirth. Further no other study has considered the phenomenon of engaging with these types of stories whilst pregnant. This study reveals how engaging with the ‘modern birth story’ and the ‘idle talk’ of birth may influence women’s expectations and consequent experience of birth. (shrink)

Recent studies in psychosocial oncology that seek to address the social, psychological, emotional, spiritual, quality of life, and functional impacts of cancer, report positive findings for meaning-making interventions designed to help cancer patients cope with their illness experience. These interventions are successful in decreasing depression among cancer patients and increasing life satisfaction, self-esteem, coping, physical functioning, and optimism. Yet, despite these positive findings meaning-making interventions and, more generally psychosocial care, are not well integrated into hospital or healthcare organization routine cancer (...) patient care.This thesis explores practical, theoretical, and bioethical barriers to integrating psychosocial care, focusing primarily on the latter considerations. I will argue that meaning-making interventions fall within the bounds of healthcare professionals’ capacities and duty to care, more to the point, as necessary for quality cancer patient care. The bioethical principle of respect for autonomy, when reconsidered from a feminist standpoint, morally requires the intervention’s inclusion in routine care. (shrink)