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 Christy Cauley joins Ethics Talk to discuss her article, coauthored with Dr Zara Cooper: "Which Priorities Should Guide Palliative Surgical Research?"
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.
Pablo A. Ormachea, JD, Sasha Davenport, Gabe Haarsma, PhD, Anna Jarman, Howard Henderson, PhD, and David M. Eagleman, PhD
A new neuropsychological, game-based test battery to measure traits predictive of recidivism holds promise for individually tailoring criminal sentences.
AMA J Ethics. 2016; 18(3):243-251. doi:
10.1001/journalofethics.2016.18.3.stas1-1603.
Priorities far beyond generating morbidity or mortality data are needed to improve patients’ experiences, innovate metrics, and advance surgical palliation as a field.
AMA J Ethics. 2021; 23(10):E806-810. doi:
10.1001/amajethics.2021.806.