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.
A judicious approach to autism would be to replace a “disability” or “illness” paradigm with a “diversity” perspective that takes into account both strengths and weaknesses and the idea that variation can be positive in and of itself.
AMA J Ethics. 2015;17(4):348-352. doi:
10.1001/journalofethics.2015.17.4.msoc1-1504.
In treating children with autism, physicians should reframe the common dynamic in which the family wants medication that the doctor is withholding to focus instead on the family’s and physician’s share goal—the patient’s well-being.
AMA J Ethics. 2015;17(4):299-304. doi:
10.1001/journalofethics.2015.17.4.ecas1-1504.
Dr Helen Stanton Chapple joins Ethics Talk to talk about teaching health professions students and trainees about acknowledging and realizing dying in a healthy way.