This is the introduction to the inaugural issue of The Journal of Philosophy of Disability.

The guiding premise from which this special report begins is the conviction and hope that justice is at the normative heart of medicine and that it is the perpetual task of bioethics to bring concerns of justice to bear on medical practice. On such an account, justice is medicine's lifeblood, that by which it contributes to life as opposed to diminishing it. It is in this larger, historical, intersectional, critical, and ethically minded context that we must approach pressing questions facing (...) medicine, including the question of the import and role of genomic knowledge for human life. The second premise is that, at least in principle, the knowledge generated by genomics can be a gift or a weight, or both at the same time. That is to say that, on the one hand, genomic knowledge is a gift, creating novel insights into the genetic drivers of disease and into the geographical paths of our ancestors. And on the other hand, it is a weight, creating new obligations, new forms of social classification, and new forms of surveillance. Because it is in many ways the “common sense” of the day that genomic knowledge is a gift, this special report, which contains nine essays, concentrates on the ways in which such knowledge can be a weight, a weight that has the potential to thwart—and historically has thwarted—medicine from genuinely advancing justice . (shrink)

This article develops a detailed, empirically driven analysis of the nature of the transition costs incurred in becoming disabled. Our analysis of the complex nature of these costs supports the claim that it can be wrong to cause disability, even if disability is just one way of being different. We also argue that close attention to the nature of transition costs gives us reason to doubt that well-being, including transitory impacts on well-being, is the only thing that should determine the (...) wrongness of causing or removing disability. Non-welfare considerations also defeat the claim that it is always wrong to cause disability. The upshot of these conclusions is that closer attention to the nature of transition costs supports disabled people who strenuously contest the assumption that their well-being is lower than nondisabled people. It also suggests that, in addition, disabled people should contest their opponents’ narrow account of how we should make ethical decisions regarding causing or failing to prevent disability. (shrink)

Ableist attitudes and structures regarding disability are increasingly recognized across all sectors of healthcare delivery. After Dobbs, novel questions arose in the USA concerning how to protect reproductive autonomy while avoiding discrimination against and devaluation of disabled persons. As a case study, we examine the Louisiana’s Department of Public Health August 1st Emergency Declaration, “List of Conditions that shall deem an Unborn Child ‘Medically Futile.’” We raise a number of medical, ethical, and public health concerns that lead us to argue (...) the declaration should be rescinded. The ethically objectionable declaration provides valuable lessons concerning how to uphold both reproductive and disability justice in a post-Dobbs landscape. (shrink)

Informed consent is a central concept for empirical and theoretical research concerning pregnancy management decisions and is often taken to be one of the more fundamental goals of the profession of genetic counseling. Tellingly, this concept has been seen by disability communities as salutary, despite longstanding critiques made by disability activists, advocates, and scholars concerning practices involved in genetic counseling more generally. In this chapter, we show that the widespread faith in informed consent is misleading and can be detrimental to (...) the practice of genetic counseling as guided by concerns of justice and equity. We proceed in two steps. First, we explain how informed consent is flawed as a practical concept. Second, we show how the inadequacy of informed consent illuminates the animating core of disability critiques of genetic counseling: the issue of ableism. We argue that the problem of ableism cannot be solved with informed consent because it is not merely a problem of information, but also of epistemic schemas. We suggest that what we call critically informed consent is better suited to move genetic counseling from being aware of the problem of ableism to becoming actively anti-ableist. (shrink)

En estudios sobre economía de la salud es usual la utilización de las unidades de medida que ponderan la cantidad de años de vida esperados y la presencia de discapacidad (DALY) o la calidad de vida (QALY) durante dicho período. El objetivo de este trabajo es indagar en los supuestos y las consecuencias éticas del uso de estas unidades de medida como criterios de prioridad o desempate en decisiones de triaje durante la pandemia de COVID-19. Se abordará, en primer lugar, (...) las conexiones entre estas categorías y la perspectiva estándar de la calidad de vida de las personas con discapacidad, según la cual la calidad de vida tales personas son comparativamente inferior a la del resto. En segundo lugar, se argumentará que dicha perspectiva es errónea y que, cuando influye en decisiones de triaje, retroalimenta injusticias estructurales no permisibles desde un marco ético de equidad. Por último, se discutirá la representación de la profundización de los mecanismos que producen desigualdad e injusticia estructural como un período de crisis que justifica estados de emergencia, excepción y urgencia. Esto permitirá mostrar que focalizar únicamente en la necesidad de aplicar criterios individuales de prioridad o desempate en decisiones de triaje durante el COVID-19 se presenta bajo una retórica engañosa que esconde los procesos sistemáticos de exclusión y explotación que han producido gran parte de las condiciones que generan los dilemas del presente, y que obtura medidas integrales, colectivas y a largo plazo. (shrink)