Despite a tendency to react otherwise, there is no obvious reason to believe that economically disadvantaged people ought not to be exposed to the same levels of research risk as the rest of the population.
Public and private choices about allocation of funds for research raise a social-justice question: are these funding sources making fair decisions about where to invest their resources? The NIH has the clearest obligation to do so because it is taxpayer-supported.
The question that comes to mind when one considers the risks of a clinical trial is, “Why would anyone agree to participate?” Interviews with trial volunteers and their family members make clear that often it is the appeal of discovering something new and unknown.
Undocumented patients in the United States with end-stage renal disease receive “compassionate” dialysis. Such patients oscillate between being marginally well and “ill enough” to receive dialysis while clinicians wrestle with complicity in a system that both offers and withholds life-saving therapy.
AMA J Ethics. 2018; 20(8):E778-779. doi:
10.1001/amajethics.2018.778.
Clara C. Hildebrandt, MD and Jonathan M. Marron, MD, MPH
Gene editing with CRISPR/Cas9 raises concerns about equitable access to therapies that could limit research participation by minority group members. These concerns can be addressed through public education, transparency, and stakeholder partnerships.
AMA J Ethics. 2018; 20(9):E826-833. doi:
10.1001/amajethics.2018.826.
Giving undocumented immigrants and those with DACA status (DREAMers) access to health care and medical education enables them to contribute to these systems.
AMA J Ethics. 2017; 19(3):221-233. doi:
10.1001/journalofethics.2017.19.3.peer1-1703.
Dr Lisa Fuller joins Ethics Talk to discuss her article: “How Should Organizations and Clinicians Help Marginalized Patients Manage Loneliness as a Harm of Climate Change?”