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.
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.
Dania Pagarkar joins Ethics Talk to discuss her article, coauthored with Drs Erin Harrop and Lisa Erlanger: “How Should We Approach Body Size Diversity in Clinical Trials?”
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?”