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.
Dr Brent M. Kious joins Ethics Talk to discuss his article, coauthored with Dr Ryan H. Nelson: “Does It Matter Whether a Psychiatric Intervention Is ‘Palliative’?”
Dr Anna L. Westermair joins Ethics Talk to discuss her article, coauthored with Dr Manuel Trachsel: “Moral Intuitions About Futility as Prompts for Evaluating Goals in Mental Health Care.”
Dr Cynthia Geppert joins Ethics Talk to discuss how teaching health professions students and trainees about palliative psychiatry reinvigorates core philosophy of medicine investigations into what health care is for.