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.
Tracy Shamas, MSN, APRN and Sarah Gillespie-Heyman, MSN, APRN
Veterans at the end of life have special needs due to posttraumatic stress disorder, environmental exposures, and the influence of military culture on their values. Those who die outside the Veterans Affairs health care system, however, can be at increased risk for receiving outpatient palliative care that is not sensitive to these factors.
AMA J Ethics. 2018;20(8):E787-792. doi:
10.1001/amajethics.2018.787.
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.
Targeted dosing to treat pediatric inflammatory bowel disease is challenging because dosing guidelines are based on data gathered from adult subjects of clinical trials. Patients’ families and health care organizations also incur high costs and must try to balance potential benefits against risks of ongoing monitoring.
AMA J Ethics. 2018;20(9):E841-848. doi:
10.1001/amajethics.2018.841.
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?”