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.
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.
Nat Mulkey, MD, Carl G. Streed Jr, MD, MPH, and Barbara M. Chubak, MD
Some clinicians cite absence of long-term data to justify not fully deferring surgery for children with DSD, and legal restrictions of early procedures are also at play.
AMA J Ethics. 2021;23(7):E550-556. doi:
10.1001/amajethics.2021.550.
Dr Nat Mulkey and Dr Carl G. Streed Jr join Ethics Talk to discuss their article coauthored with Dr Barbara M. Chubak, "A Call to Update Standard of Care for Children With Differences in Sex Development."