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.
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.
The Holocaust and the racial hygiene doctrine that helped rationalize it still overshadow contemporary debates about using gene editing for disease prevention.
AMA J Ethics. 2021;23(1):E49-54. doi:
10.1001/amajethics.2021.49.
Being marked as an “other” outside of the circle of human concern expresses tension between principles of liberty and equality and exacerbates health inequity.
AMA J Ethics. 2021;23(2):E166-174. doi:
10.1001/amajethics.2021.166.