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.
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.
Social and behavioral data contained in electronic health records are essential for studying health disparities. Can researchers avoid bias when collecting, analyzing, and using such data?
AMA J Ethics. 2018;20(9):E873-880. doi:
10.1001/amajethics.2018.873.
Joel A. DeLisa, MD, MS and Jacob Jay Lindenthal, PhD, DrPH
Research on experiences of practicing physicians who have disabilities could help medical schools counsel applicants and increase enrollment among students with disabilities. This can ultimately improve care for patients with disabilities.
AMA J Ethics. 2016;18(10):1003-1009. doi:
10.1001/journalofethics.2016.18.10.stas1-1610.
The law and medical ethics demand reconsideration of inflexible technical standards that are vulnerable to litigation under disability discrimination laws.
AMA J Ethics. 2016;18(10):1010-1016. doi:
10.1001/journalofethics.2016.18.10.hlaw1-1610.
The meaning of “disability” has shifted with US public policy changes over time. People with disability are protected under civil rights law, and open questions remain about whether and when policy-level interventions and reasonable accommodations create equal opportunity.
AMA J Ethics. 2016;18(10):1025-1033. doi:
10.1001/journalofethics.2016.18.10.pfor2-1610.
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?”