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.
An emerging medical ethics issue is whether to delay posting pathology reports to electronic health records (EHR) to allow clinicians time to follow up.
AMA J Ethics. 2016;18(8):826-832. doi:
10.1001/journalofethics.2016.18.8.pfor1-1608.
Dr Vivek H. Murthy joins Ethics Talk to discuss loneliness as a public health threat and the connection between loneliness, public health responsiveness, and the health of our democracy.
Some disability advocates take issue with the “normalization” goals of the medical model of rehabilitation, but expressions of that position can be dismissive of rehabilitationists’ efforts to remediate oppressive functional deficits.
AMA J Ethics. 2015;17(6):562-567. doi:
10.1001/journalofethics.2015.17.6.msoc1-1506.
Dr Jamaji C. Nwanaji-Enwerem joins Ethics Talk to discuss his collection of images: Intentionally Retained, Intentionally Fragmented, Accidentally Retained, and Accidentally Fragmented.
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.