This article compares three models for conceptualizing the political and ethical challenges of contemporary genetics, genomics, and postgenomics. The three analytical approaches are referred to as the state-politics model, the biopolitical model, and the infopolitical model. Each of these models is valuable for different purposes. But comparing these models in terms of their influence in contemporary discussions, the first is by far the dominant approach, the second is gaining in importance, and the third is almost entirely neglected. The widespread neglect (...) of the infopolitical dimensions of genetic sciences focused by the third model is puzzling in light of the fact that genetics, genomics, and postgenomics are all pre-eminent information sciences. The infopolitical model thus aims to bring into clearer view the specific political and ethical problems engendered by this informational nature of the genetic sciences. This model offers a way of understanding how ethically-salient and politically-fraught conceptual assumptions can be embedded in informational architectures such as algorithms and the formats (or data structures) upon which they rely. (shrink)

This paper argues that epistemic errors rooted in group- or identity- based biases, especially those pertaining to disability, are undertheorized in the literature on medical error. After sketching dominant taxonomies of medical error, we turn to the field of social epistemology to understand the role that epistemic schemas play in contributing to medical errors that disproportionately affect patients from marginalized social groups. We examine the effects of this unequal distribution through a detailed case study of ableism. There are four primary (...) mechanisms through which the epistemic schema of ableism distorts communication between nondisabled physicians and disabled patients: testimonial injustice, epistemic overconfidence, epistemic erasure, and epistemic derailing. Measures against epistemic injustices in general and against schema-based medical errors in particular are ultimately issues of justice that must be better addressed at all levels of health care practice. (shrink)

The historical relationship between health care professionals and people with disabilities is fraught, a fact all the more troubling in light of the distinctive roles clinicians play in both establishing and responding to that which is considered normal or abnormal by society at large. Those who wish to improve their clinical practice might struggle, however, to keep up with developments across numerous disability communities as well as the ever-growing body of disability studies scholarship. To assist with this goal, I offer (...) an overview of recent disability theory, outline a set of responsibilities clinicians have to disability communities, and provide recommendations for clinicians who hope to justly treat patients with disabilities and improve their care and health outcomes. (shrink)

Debates about expanding newborn screening with whole genome sequencing are fueled by data about public perception, public opinion, and the positions taken by public advocates and advocacy groups. One form of evidence that merits attention as we consider possible uses of whole‐genome sequencing during the newborn period is parents’ (and children's) diverse experiences with existing expanded screening protocols. What do we know about this experience base? And what implications might these data have for decisions about how we use whole genome (...) sequencing and how we assess its impact in the future? Although the broader literature on genetic susceptibility testing suggests that testing usually does not have adverse effects on children's psychosocial well‐being, certain newborn screening results have been demonstrated to cause distress, alter behavior, and even to influence the formation of new parental and family identities. (shrink)

As new parents quickly learn, parenting always involves choosing your battles. Ideally, parents have the freedom to make those moral choices without the prejudice of an unreasonable or premature inflicted ought. Resolving the predictive uncertainties of genomic information is the professional responsibility of the biomedical community, just as clarifying the impact of global warming or assessing the risks of rising multidrug resistance is the responsibility of similar specialists. Until sequencing can give parents clear and meaningful information that they can use (...) to protect their children without also burdening parents with uncertain findings about which little if anything can be done, it makes no sense to impute an obligation for them to seek it out. To do so not only increases the mental and emotional burden on parents but also distorts the scope of parental responsibility in ways that undermine parents’ capacity to play their immediate role as the nurturers of a new life. (shrink)

Chronic fatigue syndrome or myalgic encephalomyelitis remains a controversial illness category. This paper surveys the state of knowledge and attitudes about this illness and proposes that epistemic concerns about the testimonial credibility of patients can be articulated using Miranda Fricker’s concept of epistemic injustice. While there is consensus within mainstream medical guidelines that there is no known cause of CFS/ME, there is continued debate about how best to conceive of CFS/ME, including disagreement about how to interpret clinical studies of treatments. (...) Against this background, robust qualitative and quantitative research from a range of countries has found that many doctors display uncertainty about whether CFS/ME is real, which may result in delays in diagnosis and treatment for patients. Strikingly, qualitative research evinces that patients with CFS/ME often experience suspicion by health professionals, and many patients vocally oppose the effectiveness, and the conceptualization, of their illness as psychologically treatable. We address the intersection of these issues and healthcare ethics, and claim that this state of affairs can be explained as a case of epistemic injustice. We find evidence that healthcare consultations are fora where patients with CFS/ME may be particularly vulnerable to epistemic injustice. We argue that the marginalization of many patients is a professional failure that may lead to further ethical and practical consequences both for progressive research into CFS/ME, and for ethical care and delivery of current treatments among individuals suffering from this debilitating illness. (shrink)

In this paper we argue that ill persons are particularly vulnerable to epistemic injustice in the sense articulated by Fricker. Ill persons are vulnerable to testimonial injustice through the presumptive attribution of characteristics like cognitive unreliability and emotional instability that downgrade the credibility of their testimonies. Ill persons are also vulnerable to hermeneutical injustice because many aspects of the experience of illness are difficult to understand and communicate and this often owes to gaps in collective hermeneutical resources. We then argue (...) that epistemic injustice arises in part owing to the epistemic privilege enjoyed by the practitioners and institutions of contemporary healthcare services—the former owing to their training, expertise, and third-person psychology, and the latter owing to their implicit privileging of certain styles of articulating and evidencing testimonies in ways that marginalise ill persons. We suggest that a phenomenological toolkit may be part of an effort to ameliorate epistemic injustice. (shrink)

Disability is primarily a social phenomenon -- a way of being a minority, a way of facing social oppression, but not a way of being inherently or intrinsically worse off. This is how disability is understood in the Disability Rights and Disability Pride movements; but there is a massive disconnect with the way disability is typically viewed within analytic philosophy. The idea that disability is not inherently bad or sub-optimal is one that many philosophers treat with open skepticism, and sometimes (...) even with scorn. The goal of this book is to articulate and defend a version of the view of disability that is common in the Disability Rights movement. To be physically disabled is not to have a defective body, but simply to have a minority body. (shrink)

In the Middle Ages there were gaols and dungeons, but punishment was for the most part a spectacle. The economic changes and growing popular dissent of the 18th century made necessary a more systematic control over the individual members of society, and this in effect meant a change from punishment, which chastised the body, to reform, which touched the soul.

It is commonly believed that disability disqualifies people from full participation in or recognition by society. This view is rooted in eugenic logic, which tells us that our world would be a better place if disability could be eliminated. In opposition to this position, I argue that that disability is inherent in the human condition and consider the bioethical question of why we might want to conserve rather than eliminate disability from our shared world. To do so, I draw together (...) an eclectic, rather than systematic, configuration of counter-eugenic arguments for conserving disability. The idea of preserving intact, keeping alive, and even encouraging to flourish denoted by conserve suggests that disabilities would be better understood as benefits rather than deficits. I present, then, a reading of disability as a potentially generative resource rather than unequivocally restrictive liability. In other words, what I consider here is the cultural and material contributions disability offers to the world. (shrink)

I distinguish between two senses in which feminists have argued that the knower is social: 1. situated or socially positioned and 2. interdependent. I argue that these two aspects of the knower work in cooperation with each other in a way that can produce willful hermeneutical ignorance, a type of epistemic injustice absent from Miranda Fricker's Epistemic Injustice. Analyzing the limitations of Fricker's analysis of the trial of Tom Robinson in Harper Lee's To Kill a Mockingbird with attention to the (...) way in which situatedness and interdependence work in tandem, I develop an understanding of willful hermeneutical ignorance, which occurs when dominantly situated knowers refuse to acknowledge epistemic tools developed from the experienced world of those situated marginally. Such refusals allow dominantly situated knowers to misunderstand, misinterpret, and/or ignore whole parts of the world. (shrink)

The process of medicalization has been analyzed in the medical humanities with disapprobation, with much emphasis placed on its ability to reinforce existing social power structures to ill effect. While true, this is an incomplete picture of medicalization. I argue that medicalization can both reinforce and disrupt existing social hierarchies within the clinic and outside of it, to ill or good effect. We must attend to how this takes place locally and globally lest we misunderstand how medicalization mediates power and (...) justice. I provide concrete examples of how this occurs by considering dysesthesia ethiopsis, autism, chronic fatigue syndrome, depression, and HIV/AIDS. (shrink)

Miranda Fricker's important study of epistemic injustice is focussed primarily on testimonial injustice and hermeneutic injustice. It explores how agents' capacities to make assertions and provide testimony can be impaired in ways that can involve forms of distinctively epistemic injustice. My paper identifies a wider range of forms of epistemic injustice that do not all involve the ability to make assertions or offer testimony. The paper considers some examples of some other ways in which injustice can prevent someone from participating (...) in inquiry. (shrink)

Fricker shows that virtue epistemology provides a general epistemological idiom in which these issues can be forcefully discussed.

In this paper, I argue that the concept of normality in medical research and clinical practice is inextricable from the concept of ambiguity. I make this argument in the context of Edmund Pellegrino's call for a renewed reflection on medicine’s basic concepts and by drawing on work in critical disability studies concerning Deafness and body integrity identity disorder. If medical practitioners and philosophers of medicine wish to improve their understanding of the meaning of medicine as well as its concrete practice, (...) I contend that they should take seriously the import and centrality of ambiguity for biomedicine. (shrink)

Argues that the War on Drugs and policies that deny convicted felons equal access to employment, housing, education and public benefits create a permanent under-caste based largely on race. Reprint. 12,500 first printing.

The second edition of The Disability Studies Reader builds and improves upon the classic first edition, which has sold well over 6000 copies since 1999.

The development of genomic technologies has seemed almost magical. Excitement about it, both in medicine and among the public, stems from the belief that genomic techniques will illuminate the causes of health and disease, will lead to effective interventions for both rare and common genetic conditions, and will inform reproductive decision‐making. Novel diagnostic tools, however, are often deployed before targeted therapies are developed, tested, or available and before their psychosocial implications are explored. Newer technologies such as prenatal whole exome screening (...) are seen as offering “decisional autonomy” to expectant parents, although such technologies identify information about genetic sequencing that may not have clear meaning. The “therapeutic gap” between the ability to conduct genetic sequencing and the ability to fully understand what the test results mean, much less what treatments to offer, leaves families with complex and unclear information they cannot act upon with confidence during pregnancy. In this essay, we will consider the psychosocial and ethical implications of such assumptions—and of the uncertain information produced by these technologies—for individuals and families and for societal aspects such as medical service usage and demographic inequities. (shrink)

Equal moral status for all human beings does not commit us to the malignant exclusionary practices we find in racism and pernicious nationalism. Racism (like the other harmful “ism”) involves a group that is constituted by appropriating to one’s own “primal group” a set “desirable” intrinsic properties (or traits) and expelling from the primal group those with the undesirable properties through subjugation, exploitation, sterilization, or extermination. The moral harm in racism is practiced by a ‘constituted’ group that must always police (...) its borders with violence and justifications for its privilege. The Nazi’s Project T4, which exterminated mentally disabled children born of German parents, and the subsequent exterminations of racialized groups, in particular the Jews, were regarded as the one process of cleansing Germany and its conquered territories of defective and inferior beings. Rather than being instances of “preferring one’s own,” the racist project was that of constituting the group by appropriating for itself all the desirable traits and expelling all undesirable ones, thus linking ablism and racism. (shrink)