This paper argues that the medical conception of health as absence of disease is a value-free theoretical notion. Its main elements are biological function and statistical normality, in contrast to various other ideas prominent in the literature on health. Apart from universal environmental injuries, diseases are internal states that depress a functional ability below species-typical levels. Health as freedom from disease is then statistical normality of function, i.e., the ability to perform all typical physiological functions with at least typical efficiency. (...) This conception of health is as value-free as statements of biological function. The view that health is essentially value-laden, held by most writers on the topic, seems to have one of two sources: an assumption that health judgments must be practical judgments about the treatment of patients, or a commitment to "positive" health beyond the absence of disease. I suggest that the assumption is mistaken, the commitment possibly misdescribed. (shrink)

This article discusses the acquisition of a physical impairment/disability through voluntary body modification, or transability. From the perspectives of critical genealogy and feminist intersectional analysis, the article considers the ability and cis*/trans* axes in order to question the boundaries between trans and transabled experience and examines two assumptions impeding the conceptualization of their placement on the same continuum: 1) trans studies assumes an able-bodied trans identity and able-bodied trans subject of analysis; and 2) disability studies assumes a cis* disabled identity. (...) The perception of transsexuality and transability as mutually exclusive phenomena results from a nonintersectional analysis of transsexuality as an issue of sex/gender, but not of ability, and of transability as an issue of ability, but not of sex/gender. Difficulty recognizing continuities between these phenomena thus stems from an ableist interpretation of sex/gender and a cisnormative* interpretation of ability. This article aims to: 1) enrich intersectional analysis in trans and disability studies and transability scholarship; 2) complicate disability studies, in which disabilities are often presumed to be “involuntary,” and encourage the decentering of a cis* subject; 3) encourage trans studies to decenter an able-bodied subject; and 4) advocate for increased dialogue and the creation of alliances between trans and disability studies and movements. (shrink)

The term body integrity identity disorder (BIID) describes the extremely rare phenomenon of persons who desire the amputation of one or more healthy limbs or who desire a paralysis. Some of these persons mutilate themselves; others ask surgeons for an amputation or for the transection of their spinal cord. Psychologists and physicians explain this phenomenon in quite different ways; but a successful psychotherapeutic or pharmaceutical therapy is not known. Lobbies of persons suffering from BIID explain the desire for amputation in (...) analogy to the desire of transsexuals for surgical sex reassignment. Medical ethicists discuss the controversy about elective amputations of healthy limbs: on the one hand the principle of autonomy is used to deduce the right for body modifications; on the other hand the autonomy of BIID patients is doubted. Neurological results suggest that BIID is a brain disorder producing a disruption of the body image, for which parallels for stroke patients are known. If BIID were a neuropsychological disturbance, which includes missing insight into the illness and a specific lack of autonomy, then amputations would be contraindicated and must be evaluated as bodily injuries of mentally disordered patients. Instead of only curing the symptom, a causal therapy should be developed to integrate the alien limb into the body image. (shrink)

Body Integrity Identity Disorder (BIID) is a very rare condition describing those with an intense desire or need to move from a state of ability to relative impairment, typically through the amputation of one or more limbs. In this paper, I draw upon research in critical disability studies and philosophy of disability to critique arguments based upon the principle of nonmaleficence against such surgery. I demonstrate how the action-relative concept of harm in such arguments relies upon suspect notions of biological (...) and statistical normality, and I contend that each fail to provide normative guidance. I then propose a critical theory of harm, one marked by substantive engagement with both empirical and reflective inquiry across the sciences, social sciences, and humanities. I conclude by discussing the implications of this theory and how it might enrich ongoing debates in bioethics, philosophy of disability, and the health humanities. (shrink)

The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...) are embracing this populist rhetoric to encourage wider public participation. We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of “citizen science” outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of “public engagement” when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the “care.data” project of the National Health Service in England, and its proactive uses in the “Precision Medicine Initiative” of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of “citizen science,” the contexts in which it is used, and its demands with respect to participation, engagement, and governance. (shrink)

Advances in genomics have led to calls for developing population-based preventive genomic sequencing programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the generation, use, and handling of their genomic information. In this article we examine whether PGS programs should offer individuals the opportunity to selectively opt out of the (...) sequencing or analysis of specific genomic conditions or whether PGS should be implemented using an all-or-nothing panel approach. We conclude that any responsible scale-up of PGS will require a menu approach that may seem impractical to some, but that draws its justification from a rich mix of normative, legal, and practical considerations. (shrink)

How should we make choices when we know so little about our futures? L. A. Paul argues that we must view life decisions as choices to make discoveries about the nature of experience. Her account of transformative experience holds that part of the value of living authentically is to experience our lives and preferences in whatever ways they evolve.

Putting the ethical tools of philosophy to work, Ellen K. Feder seeks to clarify how we should understand "the problem" of intersex. Adults often report that medical interventions they underwent as children to "correct" atypical sex anatomies caused them physical and psychological harm. Proposing a philosophical framework for the treatment of children with intersex conditions—one that acknowledges the intertwined identities of parents, children, and their doctors—Feder presents a persuasive moral argument for collective responsibility to these children and their families.

In this path-breaking work, Paul Thagard draws on history and philosophy of science, cognitive psychology, and the field of artificial intelligence to develop a ...

Thomas S. Kuhn's classic book is now available with a new index.

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)

Having encountered landmines in offering a critique of philosophy based on my experience as the mother of a cognitively disabled daughter, I ask, “Should I continue?” I defend the idea that pursuing this project is of a piece with the invisible care labor that is done by people with disabilities and their families. The value of attempting to influence philosophical conceptions of cognitive disability by virtue of this experience is justified by an inextricable relationship between the personal, the political, and (...) the philosophical. If one grants that the “special relationship” between mother and child requires moral recognition, then I need first to make vivid the case that this relationship in the case of a child who lacks some “normal capacities” is indistinguishable from any mother‐child relationship. If this is so, then I believe I can make a case that has as its conclusion that the moral personhood of even the severely cognitively disabled must be granted. Moreover, such recognition, I argue, necessitates the recognition of others who bear no special relationships to the child. (shrink)

This essay rethinks the Tuskegee Syphilis Experiments in light of a long history of experimentation in plantation geographies of the U.S. South. Turning to late nineteenth- and early twentieth-century discourses of the New South and to Booker T. Washington’s Tuskegee Institute, this essay illuminates the extension of the laboratory life of the plantation into the twentieth century. The focus on personal hygiene at the Tuskegee Institute opened the door for alliances with public health initiatives early on, making the school’s student (...) population as well as residents of surrounding counties subjects of intense hygienic surveillance well before the official start of the syphilis study. (shrink)