It is widely recognized that prioritizing health care resources by their relative cost-effectiveness can result in lower priority for the treatment of disabled persons than otherwise similar non-disabled persons. I distinguish six different ways in which this discrimination against the disabled can occur. I then spell out and evaluate the following moral objections to this discrimination, most of which capture an aspect of its unethical character: it implies that disabled persons' lives are of lesser value than those of non-disabled persons; (...) it constitutes “double jeopardy” or violates Frances Kamm's non-linkage principle; it conflicts with equality of opportunity; it conflicts with fairness, which requires ignoring (some/most) differential impacts of treatment; it wrongly gives lower priority to disabled persons for equally effective treatment; it conflicts with giving all persons an equal chance to reach their full potential; and, it is in conflict with giving priority to the worse off. (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)

Disability activists influenced by queer theory and advocates of “human enhancement” have each disputed the idea that what is “normal” is normatively significant, which currently plays a key role in the regulation of pre-implantation genetic diagnosis (PGD). Previously, I have argued that the only way to avoid the implication that parents have strong reasons to select children of one sex (most plausibly, female) over the other is to affirm the moral significance of sexually dimorphic human biological norms. After outlining the (...) logic that generates this conclusion, I investigate the extent to which it might also facilitate an alternative, progressive, opening up of the notion of the normal and of the criteria against which we should evaluate the relative merits of different forms of embodiment. This paper therefore investigates the implications of ideas derived from queer theory for the future of PGD and of PGD for the future of queerness. (shrink)

The idea that a world in which everyone was born “perfect” would be a world in which something valuable was missing often comes up in debates about the ethics of technologies of prenatal testing and preimplantation genetic diagnosis . This thought plays an important role in the “disability critique” of prenatal testing. However, the idea that human genetic variation is an important good with significant benefits for society at large is also embraced by a wide range of figures writing in (...) the bioethics literature, including some who are notoriously hostile to the idea that we should not select against disability. By developing a number of thought experiments wherein we are to contemplate increasing genetic diversity from a lower baseline in order to secure this value, I argue that this powerful intuition is more problematic than is generally recognized, especially where the price of diversity is the well-being of particular individuals. (shrink)

This article discusses the ethics of the use of preimplantation genetic diagnosis to prevent the birth of children with intersex conditions/disorders of sex development , such as congenital adrenal hyperplasia and androgen insensitivity syndrome . While pediatric surgeries performed on children with ambiguous genitalia have been the topic of intense bioethical controversy, there has been almost no discussion to date of the ethics of the use of PGD to reduce the prevalence of these conditions. I suggest that PGD for those (...) conditions that involve serious medical risks for those born with them is morally permissible and that PGD for other “cosmetic” variations in sexual anatomy is more defensible than might first appear. However, importantly, the arguments that establish the latter claim have radical and disturbing implications for our attitude toward diversity more generally. (shrink)

Bioethics as a distinctive field is undergoing a critical turn. It may be a quiet revolution, but a growing body of scholarship illustrates a perceived need for a rethink of the scope of the field and the approaches and priorities that have carried bioethicists through many heady years of success. Few areas of bioethical practice have been left unexamined, ranging from questions as to the sustainability of the discipline in its current form to the “expertise” of its practitioners; the legitimacy (...) of bioethics in the realms of policymaking; its relationship to philosophy; the purchase of empirical and interdisciplinary method; the relationship of bioethics to the real world; bioethical understandings of the concept of “health” ; its agenda, priorities, and inclusiveness right up to what might be the overarching question: “What is bioethics all about?” Unsurprisingly, these questions elicit varied responses. Scholars from various disciplines have critiqued fundamental tenets of the “ethics” business, albeit as claims of its “conservatism,” “corruption,” and its questionable “usefulness” suggest, not always with a charitable or constructive eye. But quite crucially and often overlooked, bioethics itself has not shied away from the question as to what bioethics is and what it should become; increasingly apparent is that this kind of self-conscious and reflexive theorizing is regarded as a key priority for taking contemporary ethics forward. (shrink)

(2001). How Long Has This Been Going On? Disability Issues, Disability Studies, and Bioethics. The American Journal of Bioethics: Vol. 1, No. 3, pp. 54-55.

This essay re-examines the disability critique of prenatal and pre-implantation screening in light of evidence about the larger context in which fertility and reproductive healthcare is rendered in the U.S. It argues that efforts to identify acceptable criteria for trait-based selection or otherwise impose reasons-based limitations on reproductive choice should be avoided because such limitations tend to perpetuate the discrimination encountered by adults with disabilities seeking fertility and reproductive health services.

In the context of abortion stigma, most abortion stories remain untold. The stories we do tell of abortion are often told to morally recuperate the status of the woman who has an abortion through a recourse to tragedy. Tragedy frames experiences where every choice produces some suffering, so decisions are geared toward maintaining individual integrity rather than adherence to absolute moral truths. This article argues that one dominant tragic abortion narrative, that of the disabled fetus, works to recuperate the moral (...) status of “fit” mothers while actively constructing disabled lives as unlivable and undesirable. The option to stigmatize disability in recuperating the moral status of the woman who has an abortion relies on eugenic logics that also construct a variety of women as illegitimate reproductive subjects. The article analyzes narratives of Sherri Finkbine's 1962 abortion in relation to contemporary narratives of late‐term abortions involving nonviable fetuses to expose how investment in medical judgments of good births enables particular women to make use of tragic narratives to maintain their status as moral mothers without disturbing broader abortion stigma or eugenic logics. (shrink)

Preterm birth is defined as any birth that occurs prior to 37 weeks gestation, and is a leading cause of infant mortality, neurological disabilities, breathing, feeding and vision problems, and hea...

This article explores the possibility that there is a parental duty to use preimplantation genetic diagnosis (PGD) for the medical benefit of future children. Using one genetic disorder as a paradigmatic example, we find that such a duty can be supported in some situations on both ethical and legal grounds. Our analysis shows that an ethical case in favor of this position can be made when potential parents are aware that a possible future child is at substantial risk of inheriting (...) a serious genetic condition. We further argue that a legal case for a duty to use PGD for medical benefit can be made in situations in which potential parents have chosen to conceive through in vitro fertilization and know that any children conceived are at substantial risk of having a serious genetic condition. (shrink)

According to US law, insurance companies can lawfully differentiate individual health insurance premiums on the basis of non-genetic medical information, but not on the basis of genetic information. The article reviews the case for such genetic exceptionalism. First, I critically assess some standard justifications. Next, I scrutinize an argument appealing to the view that genetically based premium differentiation expresses that persons do not all merit equal concern and respect. In the final section, I argue that even if genetic exceptionalism is (...) unjustified, there is a forceful luck egalitarian argument against basing premiums on genetic risks, to wit, that this tends to make some individuals worse off than others as a result of the bad brute luck involved in having a genetically determined, above-average risk of developing health problems. (shrink)

With a few notable exceptions disability studies has not taken account of intersexuality, and it is principally through the lenses of feminist and queer-theory oriented ethical discussions but not through ‘straight’ bioethics that modes valuing intersex difference have been proposed. Meanwhile, the medical presupposition that intersex characteristics are inherently disabling to social viability remains the taken-for-granted truth from which clinical practice proceeds. In this paper I argue against bioethical perspectives that justify extensive and invasive pre- and post-natal medical interference to (...) eradicate intersex. I argue instead that to constitute the necessary conditions for the recognition of the intersexed child as a person, a life valid in its own right, clinicians must refrain from aggressive interference. Clinical specialists presuppose that intersexed children will be socially disabled and unrecognizable as persons; frustrated by the general failure of traditional interventions to assign a sex, clinicians are now pursuing prenatal technologies, including selective termination, to erase intersex. (shrink)

Analyser av cellefritt DNA fra foster i gravide kvinners blod gir nye muligheter innen fosterdiagnostikk: Testene er bedre enn eksisterende tester, de reduserer risikoen og er billigere. Flere land har tatt i bruk disse testene, og Helsedirektoratet i Norge har mottatt søknad om å ta i bruk en test som erstatter tidlig ultralyd og blodprøver. Likevel nøler norske myndigheter. Hvorfor gjør de det? Ett av svarene er at non-invasive prenatale tester fører med seg en rekke faglige og moralske spørsmål og (...) gir flere grunnleggende etiske utfordringer. Denne artikkelen gjennomgår et bredt knippe av de utfordringene som NIPT reiser. Hensikten er å synliggjøre hvorfor NIPT påkaller etisk refleksjon og å bidra til en åpen debatt og en transparent beslutningsprosess. Artikkelen identifiserer fem sentrale og konkrete spørsmål for vurderingen av NIPT.Nøkkelord: non-invasiv prenatal diagnostikk, testing, fravalg, foster, blodprøve, ekspressivisme, statsliberalt dilemma, dilemma, abort, retten til ikke å viteEnglish summary: Ethical challenges with non-invasive prenatal tests Non-invasive prenatal testing performed with the use of massively parallel sequencing of cell-free DNA in maternal plasma gives extended possibilities in prenatal screening. The tests are claimed to be better than existing alternative tests, they reduce the risk, and it is claimed they are cheaper. They have been used in several countries since 2012, and the University Hospital of North Norway has applied to the Directorate of Health to replace first trimester ultrasound and plasma screening with NIPT. The Directorate of Health is reluctant to reply. Why is this? One of the answers may be that NIPT raises a series of professional and moral questions, and poses profound ethical challenges. This article reviews a series of the challenges with NIPT. The aim is to highlight why NIPT calls for ethical reflection and to contribute to an open debate and a transparent decision-making process. The article identifies five major questions to address in the assessment of NIPT: What are the criteria for screening and removing certain conditions? How certain do we have to be that these conditions do appear in living children? How should we handle information from NIPT for living persons? How can we avoid that persons with the conditions that are selected for screening and removal are insulted, stigmatized, or discriminated? How can we avoid that systematic screening and removal of fetuses with certain conditions develop norms and values that breach with basic social or ethical principles? (shrink)

The following is dedicated to promoting a version of the disability critique of negative genetic selection while navigating claims that launching such a critique threatens reproductive liberty or is unavoidably antichoice. I highlight problematic conceptual assumptions regarding genetics and choice made by proponents and opponents of selection alike and bring out the underlying ableist values of the prevailing conversation. Ableism is discrimination against persons on the basis of perceived disability. I conclude that the existing social and institutional milieu surrounding genetic (...) selection threatens persons who experience difference with stigma and its accompanying political and social disadvantages. My .. (shrink)

Corresponding Author, Health Policy & Ethics Fellow, Chronic Disease Prevention & Control Research Center, Department of Medicine, Baylor College of Medicine, 1709 Dryden, Suite 1025, Houston, TX 77030, USA. Tel.: 713.798.5482; Fax: 713 798 3990; Email: danielg{at}bcm.edu ' + u + '@' + d + ' '//--> . Abstract This article defends a broad model of public health, one that specifically addresses the social epidemiologic research suggesting that social conditions are primary determinants of health. The article proceeds by critiquing one (...) of the strongest arguments in favor of a narrow model, advanced by Mark Rothstein. The critique sets up the argument that a model of public health that does not address what actually causes health and disease is unlikely to improve public health. Assessing the substantial evidence regarding the social determinants of health, the article engages the policy paradox that precludes utopian prescriptions but demands more than mere expedience. CiteULike Connotea Del.icio.us What's this? (shrink)

In this paper, I look at several examples that demonstrate what I see as a troubling tendency in much of mainstream bioethics to discount the views of disabled people. Following feminist political theorists who argue in favour of a stance of humility and sensitive inclusion for people who have been marginalized, I recommend that bioethicists adopt a presumption in favour of believing rather than discounting the claims of disabled people. By taking their claims at face value and engaging with disabled (...) people in open dialogue over impairment and disadvantage, bioethicists may take to heart an important lesson about human fragility and resilience. (shrink)

This article offers the critical concept misfit in an effort to further think through the lived identity and experience of disability as it is situated in place and time. The idea of a misfit and the situation of misfitting that I offer here elaborate a materialist feminist understanding of disability by extending a consideration of how the particularities of embodiment interact with the environment in its broadest sense, to include both its spatial and temporal aspects. The interrelated dynamics of fitting (...) and misfitting constitute a particular aspect of world-making involved in material-discursive becoming. The essay makes three arguments: the concept of misfit emphasizes the particularity of varying lived embodiments and avoids a theoretical generic disabled body; the concept of misfit clarifies the current feminist critical conversation about universal vulnerability and dependence; the concept of misfitting as a shifting spatial and perpetually temporal relationship confers agency and value on disabled subjects. (shrink)

This paper examines five groups of women that were instrumental in the emergence of the category of "feeblemindedness" in the United States. It analyzes the dynamics of oppression and power relations in the following five groups of women: "feeble-minded" women, institutional caregivers, mothers, researchers, and reformists. Ultimately, I argue that a feminist analysis of the history of mental retardation is necessary to serve as a guide for future feminist work on cognitive disability.

The strategy of developing an ontology or models of disability as a prior step to settling ethical issues regarding disabilities is highly problematic for two reasons. First, key definitional aspects of disability are normative and cannot helpfully be made value-neutral. Second, if we accept that the contested concept of disability is value-laden, it is far from obvious that there are definitive reasons for choosing one interpretation of the concept over another. I conclude that the concept of disability is better left (...) ethically open-ended or broad enough to encompass the examination of various ethical issues. Alternatively, the concept of disability could be altogether abandoned in order to focus on specific issues without being hindered by debates about the nature of disability. Only political costs, rather than conceptual considerations internal to the models, could be weighed against such a conclusion. (shrink)

Continuing tensions exist between mainstream bioethics and advocates of the disability rights movement. This paper explores some of the grounds for those tensions as exemplified in From Chance to Choice: Genetics and Justice by Allen Buchanan and coauthors, a book by four prominent bioethicists that is critical of the disability rights movement. One set of factors involves the nature of disability and impairment. A second set involves presumptions regarding social values, including the importance of intelligence in relation to other human (...) characteristics, competition as the basis of social organization, and the nature of the parent–child relationship. The authors’ disapproval of certain aspects of the disability rights movement can be seen to be associated with particular positions regarding these factors. Although the authors intend to use a method of ‘broad reflective equilibrium,’ we argue that their idiosyncratic commitment to particular concepts of disability and particular social values produces a narrowing of the moral significance of their conclusions regarding disability rights. (shrink)

Proceedings of the Pittsburgh Workshop in History and Philosophy of Biology, Center for Philosophy of Science, University of Pittsburgh, March 23-24 2001 Session 1: Eugenics Narrative and Reproductive Engineering.