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.
Kyle B. Brothers, MD, PhD and Esther E. Knapp, MD, MBE
Direct-to-consumer genetic testing requires that physicians share decision making with patients, not order unnecessary tests or interventions, and refer to genetic specialists when necessary.
AMA J Ethics. 2018; 20(9):E812-818. doi:
10.1001/amajethics.2018.812.
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.
Holly K. Tabor, PhD and Aaron Goldenberg, PhD, MPH
Rare genetic disease research has something to teach precision medicine about addressing some patients’ limited access to treatment. Health disparities exacerbated by high costs and limited availability of drugs can, perhaps, be mitigated when patient activism accelerates drug development.
AMA J Ethics. 2018; 20(9):E834-840. doi:
10.1001/amajethics.2018.834.
The allocation of scarce resources, such as HLA platelets, involves a conflict between the medical ethics principles of beneficence and social justice.
AMA J Ethics. 2016; 18(8):764-770. doi:
10.1001/journalofethics.2016.18.8.ecas1-1608.
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.
After years of funding disease-specific treatment, donation trends have shifted to support broader health systems infrastructure development. A remaining challenge is how to sustain antiretroviral therapy (ART) for patients in resource-poor regions.
AMA J Ethics. 2016; 18(7):681-690. doi:
10.1001/journalofethics.2016.18.7.ecas3-1607.