While experience often affords important knowledge and insight that is difficult to garner through observation or testimony alone, it also has the potential to generate conflicts of interest and unrepresentative perspectives. We call this tension the paradox of experience. In this paper, we first outline appeals to experience made in debates about access to unproven medical products and disability bioethics, as examples of how experience claims arise in bioethics and some of the challenges raised by these claims. We then motivate (...) the idea that experience can be an asset by appealing to themes in feminist and moral epistemology, distinguishing between epistemic and justice-based appeals. Next, we explain the concern that experience may be a liability by appealing to empirical work on cognitive biases and theoretical work about the problem of partial representation. We conclude with preliminary recommendations for addressing the paradox and offer several questions for future discussion. (shrink)

Disability is often defined as deviation from putative norms of physical, cognitive, or affective function. This definition is normatively laden, causing people with disabilities to be thought of as “different” and treated with pity. We address the predominant theme of this issue on “Disability Identity”: defining and imposing the category of “disability” and attempting to overcome it through medical intervention. The issue culminates in a call for courageous humility as the proper response to encounters with disability, providing medical professionals with (...) the disposition to resist medicine’s inherent drive to fix what is perceived to be broken—that which strays from the norm. We hope that this issue might act as a clarion call to medical professionals to reevaluate how they see and interact with “disability” as a category, and ultimately with people with disabilities, especially with respect to what may be owed to persons with disabilities from society. (shrink)

Just last week (October 4, 2022), the U.S. White House released a blueprint for an A.I. Bill of Rights, consisting of “five principles and associated practices to help guide the design, use, and de...

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)