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.
In order to successfully resolve ethical conflicts, bioethics consultants must pay attention to process and heed stakeholders’ perspectives and values.
AMA J Ethics. 2016; 18(5):485-492. doi:
10.1001/journalofethics.2016.18.5.ecas2-1605.
This narrative information graphic contextualizes the lack of current maternal morbidity and mortality data in the United States since the Dobbs v Jackson Women’s Health Organization decision in 2022.
AMA J Ethics. 2024; 26(1):E92-93. doi:
10.1001/amajethics.2024.92.
Dr Gillian R. Schmitz joins Ethics Talk to discuss her article, coauthored with Dr Robert W. Strauss: “What Should Students and Trainees Be Taught About Turfing and Where Patients Belong?”
Makenzie Doubek joins Ethics Talk to discuss her article, coauthored with Scott J. Schweikart: “Why Should Physicians Care About What Law Says About Turfing and Dumping Patients?”
Treatment decisions in high-risk situations require a dynamic relationship between doctor and patient in which patient preferences and clinician recommendations contribute equally in shaping a final treatment decision.