The deeply entrenched, sometimes heated conflict between the disability movement and the profession of bioethics is well known and well documented. Critiques of prenatal diagnosis and selective abortion are probably the most salient and most sophisticated of disability studies scholars’ engagements with bioethics, but there are many other topics over which disability activists and scholars have encountered the field of bioethics in an adversarial way, including health care rationing, growth-attenuation interventions, assisted reproduction technology, and physician-assisted suicide. The tension between the (...) analyses of the disabilities studies scholars and mainstream bioethics is not merely a conflict between two insular political groups, however; it is, rather, also an encounter between those who have experienced disability and those who have not. This paper explores that idea. I maintain that it is a mistake to think of this conflict as arising just from a difference in ideology or political commitments because it represents a much deeper difference—one rooted in variations in how human beings perceive and reason about moral problems. These are what I will refer to as variations of moral psychology. The lived experiences of disability produce variations in moral psychology that are at the heart of the moral conflict between the disability movement and mainstream bioethics. I will illustrate this point by exploring how the disability movement and mainstream bioethics come into conflict when perceiving and analyzing the moral problem of physician-assisted suicide via the lens of the principle of respect for autonomy. To reconcile its contemporary and historical conflict with the disability movement, the field of bioethics must engage with and fully consider the two groups’ differences in moral perception and reasoning, not just the explicit moral and political arguments of the disability movement. (shrink)

The deeply entrenched, sometimes heated conflict between the disability movement and the profession of bioethics is well known and well documented. Critiques of prenatal diagnosis and selective abortion are probably the most salient and most sophisticated of disability studies scholars’ engagements with bioethics, but there are many other topics over which disability activists and scholars have encountered the field of bioethics in an adversarial way, including health care rationing, growth-attenuation interventions, assisted reproduction technology, and physician-assisted suicide. -/- The tension between (...) the analyses of the disabilities studies scholars and mainstream bioethics is not merely a conflict between two insular political groups, however; it is, rather, also an encounter between those who have experienced disability and those who have not. This paper explores that idea. I maintain that it is a mistake to think of this conflict as arising just from a difference in ideology or political commitments because it represents a much deeper difference—one rooted in variations in how human beings perceive and reason about moral problems. These are what I will refer to as variations of moral psychology. The lived experiences of disability produce variations in moral psychology that are at the heart of the moral conflict between the disability movement and mainstream bioethics. I will illustrate this point by exploring how the disability movement and mainstream bioethics come into conflict when perceiving and analyzing the moral problem of physician-assisted suicide via the lens of the principle of respect for autonomy. To reconcile its contemporary and historical conflict with the disability movement, the field of bioethics must engage with and fully consider the two groups’ differences in moral perception and reasoning, not just the explicit moral and political arguments of the disability movement. (shrink)

Background Chronic pain is a pervasive and invisible condition which affects people in a myriad of ways including but not limited to their quality of life, autonomy, mental and physical health, social mobility, and productivity. There are many ethical implications of neuroscience research on chronic pain, given its potential to reduce suffering and improve the lived experience of people in pain. While a growing body of research studies the etiology, neurophysiology, and management of chronic pain, it is unknown to what (...) degree neuroscience research in this area engages with relevant ethics concepts. Aim To explore the presence of ethics concepts in empirical chronic pain neuroscience literature to advance knowledge regarding the ethics of chronic pain management. Methods We conducted a hybrid bibliometric analysis and scoping review of chronic pain neuroscience articles published between 1999 and 2021 to identify the presence of ethics concepts. We selected articles from the top, middle, and bottom 20 neuroscience journals ranked by Impact Factor. We conducted a database search of Web of Science and a hand-search using PubMed, Google Scholar, and the reference lists of included articles. Findings Our database search yielded 2779 results from which 46 articles met inclusion criteria. An additional 13 articles were hand-retrieved using PubMed and Google Scholar in accordance with the inclusion criteria, totaling 59 articles. We identified four main ethics themes in our analysis: 1) Quality of Life (n = 46), 2) Autonomy (n = 5), 3) Transparency (n = 4), and 4) Beneficence and Non-Maleficence (n = 4). Conclusion Most neuroscience papers do not include a discussion of ethics related to chronic pain conditions. Those that do tend to merely state rather than define or contextualize a particular ethics concept. Given the potential ethical implications of neuroscience research for people living with chronic pain, we argue that to maximize its public health benefit, neuroscience researchers should consider the ethical relevance of their work within their scientific publications. This may generate further ethical reflection within the field, to improve pain management. (shrink)

Concern for human vulnerability seems to be at the heart of bioethical inquiry, but the concept of vulnerability is under-theorized in the bioethical literature. The aim of this article is to show why bioethics needs an adequately theorized and nuanced conception of vulnerability. We first review approaches to vulnerability in research ethics and public health ethics, and show that the bioethical literature associates vulnerability with risk of harm and exploitation, and limited capacity for autonomy. We identify some of the challenges (...) emerging from this literature: in particular, how to reconcile universal human vulnerability with a context-sensitive analysis of specific kinds and sources of vulnerability; and how to reconcile obligations to protect vulnerable persons with obligations to respect autonomy. We then briefly survey some of the theoretical resources available within the philosophical literature to address these challenges, and to assist in understanding the conceptual connections between vulnerability and related concepts such as harm, exploitation, needs, and autonomy. We also sketch out a taxonomy of sources and kinds of vulnerability. Finally, we consider the implications for policy evaluation of making vulnerability an explicit and central focus of bioethics. Our investigation is in the form of a broad survey motivating a research agenda rather than a detailed analysis. (shrink)

Emerging technologies are increasingly used in an attempt to “enhance the human body and/or mind” beyond the contemporary standards that characterize human beings. Yet, such standards are deeply controversial and it is not an easy task to determine whether the application of a given technology to an individual and its outcome can be defined as a human enhancement or not. Despite much debate on its potential or actual ethical and social impacts, human enhancement is not subject to any consensual definition. (...) This paper proposes a timely and much needed examination of the various definitions found in the literature. We classify these definitions into four main categories: the implicit approach, the therapy-enhancement distinction, the improvement of general human capacities and the increase of well-being. After commenting on these different approaches and their limitations, we propose a definition of human enhancement that focuses on individual perceptions. While acknowledging that a definition that mainly depends on personal and subjective individual perceptions raises many challenges, we suggest that a comprehensive approach to define human enhancement could constitute a useful premise to appropriately address the complexity of the ethical and social issues it generates. (shrink)

One thousand women. Ten years. Diana Greene Foster’s epic Turnaway Study, and its namesake book, followed a thousand women who sought abortions across the United States for a decade after they were or were not successful in ending unwanted pregnancies to document how their lives changed. The result is a book rich in detail, full of facts about abortion in the United States—and somewhat more generally—that perhaps many of us knew or suspected but few could find in print. These facts (...) include why some women do not realize until the second trimester that they are pregnant, why women seek abortions later in their pregnancies, or... (shrink)

Noninvasive prenatal testing promises to enhance women's reproductive autonomy by providing genetic information about the fetus, especially in the detection of genetic impairments like Down syndrome. In practice, however, NIPT provides opportunities for intensified manipulation and control over women's reproductive decisions. Applying Miranda Fricker's concept of epistemic injustice to prenatal screening, this article analyzes how medical professionals impair reproductive decision-making by perpetuating testimonial injustice. They do so by discrediting positive parental testimony about what it is like to raise a child (...) with DS. We argue that this testimonial injustice constitutes a twofold harm: people with DS and their family members who claim that parenting a child with DS may be a rewarding and joyous experience are harmed when they are systematically silenced, disbelieved, and/or denied epistemic credibility by medical professionals, and pregnant women are harmed since they might make poorly informed choices without access to all relevant information. The broader implication of the analysis is that epistemic justice is a precondition of reproductive autonomy. We conclude by calling for federal oversight of the acquisition and dissemination of information that prospective parents receive following a positive diagnosis of DS to ensure that it is comprehensive and up to date. (shrink)

It is generally accepted that the therapeutic relationship between professionals and patients is one of trust. Nonetheless, some patient groups carry certain social vulnerabilities that can be exacerbated when they extend trust to health-care professionals. In exploring the epistemic and ethical implications of expert status, this paper examines how calls to trust may increase epistemic oppression and perpetuate the vulnerability of people with impairments. It critically evaluates the processes through which epistemic communities are formed or determined, and examines the institutional (...) structure and power relations that contribute to or sustain such self-affirming ideological communities. It also argues for a two-way collaborative approach between professionals and people with impairments that recognizes the role of local knowledge in enhancing professionals’ own understanding of their theoretical framework and promoting responsive practices and policies. (shrink)

BackgroundRespect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be adequately (...) operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics.MethodsUsing PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced.ResultsFifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations.ConclusionsThree main conclusions were reached. First, literature on relational autonomy tends to be more a ‘reaction against’ an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations. (shrink)

Rationale: In this article, I argue that we need a new perspective in the debate on autonomy in medicine, to understand many of the problems we face today – dilemmas that are situated at the intersection of autonomy and heteronomy, such as why well informed and autonomous people make unhealthy lifestyle choices. If people do not choose what they want, this is not simply caused by their lack of character or capability, but also by the fact that absolute autonomy is (...) impossible; autonomous individuals are ‘contaminated’ by heteronymous aspects, by influences from ‘outside’. Consequently, there are many good reasons to question the widely accepted hierarchical opposition of autonomy (progress) versus heteronomy (paternalism) in medicine. In an earlier article an analysis is made of the neologism ‘oughtonomy’ to support the thesis that when it comes down to human existence, autonomy and heteronomy are intertwined, rather than being merely opposites. Methods: In this article, I reflect upon how social conditions might improve our ‘choice architecture’, what Thaler & Sunstein have called ‘nudging’: how to change individual health choices without being paternalistic? I explore the extent to which both oughtonomy and nudging are able to challenge the question of autonomy in today’s medicine. Results and Conclusions: Autonomy may and should be a shared target in today’s medicine, but we should never forget that it is always intertwined with heteronomy. Starting from this perspective, progress in medicine demands far more than the increase of autonomy. (shrink)

This essay explores various philosophical approaches to cognitive disability within feminist philosophy. In doing so, it addresses three broad questions: What positive contributions can feminist philosophy make to the philosophy of cognitive disability? How have feminist philosophers critiqued the presence and absence of cognitive disability in philosophy? And what challenges does cognitive disability pose to feminist philosophy itself? The essay begins with definitions and models of disability and then turns to feminist work on cognitive disability in moral and political philosophy, (...) bioethics, and epistemology. It concludes with some methodological considerations. (shrink)

The sexual assault of persons with mental disabilities occurs at alarmingly high rates worldwide. These assaults are a form of gender-based violence intersecting with discrimination based on disability. Our research on the treatment of such cases in the Canadian criminal justice system demonstrates the systemic barriers these victims face at the level of both substantive legal doctrine and trial procedure. Relying on feminist legal theory and disability theory, we argue in this paper that abuses of trust and power underlie most (...) sexual assaults of women with mental disabilities. We argue that existing Criminal Code provisions in Canada are inadequate to address this type of exploitation because courts have consistently failed to recognize that such abuses of power and trust are fundamentally inconsistent with any notion of voluntary consent. (shrink)

The American Journal of Bioethics, Volume 11, Issue 8, Page 33-35, August 2011.

Among the many remarkable aspects of the June 2016 introduction of legislation to permit medical assistance in dying in Canada, is the central and even dominant role that women have played in moving this legislation forward, and their ongoing influence as the law continues to be reviewed and revised. The index medical cases on which the higher courts have deliberated concern women patients, and the legal decisions in the various courts have been presided over by women justices. Since the legislation (...) has become law in Canada, women have been among the most vocal and enthusiastic proponents for expanding the criteria to ensure MAiD is more accessible to more Canadians. In this paper, I discuss how the voice of women in this debate is not the ‘different voice’ of second wave feminism first articulated by Carol Gilligan and then adapted and expanded in the ethics of care and relational ethics literature. Instead it is the very familiar voice of the ethics of personal autonomy, individual rights and justice which feminist critics have long decried as inadequate to the task of articulating a comprehensive social morality. I argue for the need to reassert the different voice of relational ethics and the ethics of care into our ongoing discussion of MAiD. (shrink)