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.
Rachel A. Mills, MS, Susanne B. Haga, PhD, and Geoffrey S. Ginsburg, MD, PhD
Clinical utility is a test’s contribution to health outcomes, while personal utility considers the psychosocial and lifestyle effects and the value of the information to the patient.
Chromosomal microarray analysis reveals many gene variants of unknown significance. The uncertainty about these variants—might they be deleterious or are they benign?—complicates genetic counseling.