25.6 Million people in the United States have Limited English Proficiency (LEP), defined as insufficient ability to read, write, or understand English. We will (1) Delineate the merits of approaching language as a social determinant of health, (2) highlight pertinent public health values and guidelines which are most relevant to the plight of populations with LEP and (3) Use the COVID-19 pandemic as an example of how a breakdown in public health ethics values created harm for populations and patients with LEP. We define a framework to tease out public health responsibilities given some populations' limited proficiency in a society's predominant language. The American Public Health Association (APHA) public health ethics core values serve as a framework to interrogate current practices. We use the COVID-19 case to illustrate gaps between health policy and healthcare disparities experienced by populations with LEP.
23 February 2025 in The American Journal of Bioethics
Despite considerable scientific progress and the evolution of regulatory pathways to ensure safety and efficacy, US healthcare continues to see increasing health disparities. This suggests that clinical translation in of itself cannot be the only measure of its own success, especially when the most marginalized patients, are neglected in the development and implementation of medical innovations. This raises the question of whether a system that is narrowly focused on technical achievement can meet the moral obligations of medicine and public health. We argue that traditional technocratic standards are failing to integrate normative considerations into biomedical translation. What is needed is a translational domain that moves beyond safety and efficacy toward anticipating how proposed technologies will be effective in society as it exists. We propose an additional metric of success: translational justice.
In November 2018, the announcement that genetically edited human embryos had been used for reproductive purposes caused international uproar; many observers argued that editing the human germline was unethical, particularly given the early stage of the science and the absence of appropriate oversight. We provide an overview of the implications of these events, focusing on the relevant ethical considerations for physicians addressing patient questions and concerns. The editing of the human germline for reproductive purposes should be understood against an historic backdrop of clinical research in assisted reproduction, as well as other exemplars of translational investigation. An important question raised by our growing capacity to genetically alter human embryos is how to understand the implicit social contract between science and society. To ensure that translational research continues to enjoy the historic trust placed in scientists and research organizations, it is critical that scientific and health care institutions proactively engage governments, patient advocacy organizations, and the general public in the formation of policies that guide gene editing.
We demonstrate the fruitfulness of using card sort activities as an engagement method by detailing community consultation for ethical, legal, and social implications of sociogenomics. Readers are provided with a user-guide for card sort engagement through: (1) an overview of the card sort activity and its merits for engagement, (2) detailed methods of sorting for values-elicitation and prioritization goals, and (3) strategies to design this approach for other participatory research designs. Our intent is to add to meaningful exchanges between community engaged researchers and empirical bioethicists.