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.
Rebekah Davis Reed, PhD, JD and Erik L. Antonsen, PhD, MD
Though the National Aeronautics and Space Administration’s collection of disaggregated genetic data for occupational surveillance and research raises numerous privacy concerns, the Genetic Information Nondiscrimination Act of 2008 allows genetic information to be used to develop personal pharmaceuticals.
AMA J Ethics. 2018;20(9):E849-856. doi:
10.1001/amajethics.2018.849.
Cynthia E. Schairer, PhD, Caryn Kseniya Rubanovich, MS, and Cinnamon S. Bloss, PhD
Questions about data privacy need to be addressed when research institutions negotiate with companies developing mobile health applications. Commercial terms of use and data sharing notifications should be reviewed before use in human subject research settings.
AMA J Ethics. 2018;20(9):E864-872. doi:
10.1001/amajethics.2018.864.
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.
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.
Dr Jane Lee joins Ethics Talk to discuss her article, coauthored with Drs Gabriel Robles and Latoya Small: “What Should Students Learn About the Importance of Cultural Brokering in Immigrant Communities?”