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.
Cynthia E. Schairer, PhD, Caryn Kseniya Rubanovich, MS, and Cinnamon S. Bloss, PhD
Questions about data privacy need to be addressed when research institutions negotiate with companies developing mobile health applications. Commercial terms of use and data sharing notifications should be reviewed before use in human subject research settings.
AMA J Ethics. 2018;20(9):E864-872. doi:
10.1001/amajethics.2018.864.
Social and behavioral data contained in electronic health records are essential for studying health disparities. Can researchers avoid bias when collecting, analyzing, and using such data?
AMA J Ethics. 2018;20(9):E873-880. doi:
10.1001/amajethics.2018.873.
This commentary on a case considers the ethical feasibility of palliative psychiatry in the care of patients with severe and enduring anorexia nervosa.
AMA J Ethics. 2023;25(9):E668-673. doi:
10.1001/amajethics.2023.668.
Jonathan Treem, MD, Joel Yager, MD, and Jennifer L. Gaudiani, MD, CEDS-S
Some individuals with severe and enduring anorexia nervosa experience dramatically degraded quality of life in the face of refractory illness and compulsory treatment.
AMA J Ethics. 2023;25(9):E703-709. doi:
10.1001/amajethics.2023.703.
Dr Matthew C. Bobel joins Ethics Talk to discuss his article, coauthored with Dr Robert K. Cleary: “How Should Risk Be Communicated to Patients When Developing Resident Surgeon Robotic Skills?”