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.
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.
Emily L. Evans, PhD, MPH and Danielle Whicher, PhD, MHS
Clinical decision support systems leverage data generated in the course of standard clinical care to improve clinical practice. They need to ensure privacy and quality of patients’ data, but must also allow queries of electronic health records.
AMA J Ethics. 2018;20(9):E857-863. doi:
10.1001/amajethics.2018.857.
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.
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.
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?”