Clara C. Hildebrandt, MD and Jonathan M. Marron, MD, MPH
Gene editing with CRISPR/Cas9 raises concerns about equitable access to therapies that could limit research participation by minority group members. These concerns can be addressed through public education, transparency, and stakeholder partnerships.
AMA J Ethics. 2018;20(9):E826-833. doi:
10.1001/amajethics.2018.826.
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.
Targeted dosing to treat pediatric inflammatory bowel disease is challenging because dosing guidelines are based on data gathered from adult subjects of clinical trials. Patients’ families and health care organizations also incur high costs and must try to balance potential benefits against risks of ongoing monitoring.
AMA J Ethics. 2018;20(9):E841-848. doi:
10.1001/amajethics.2018.841.
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.
Given full information about the risks of long-term opioid therapy, patients often see the value of exploring other options rather than thinking their physicians are reluctant to prescribe narcotics for fear of litigation or regulatory action.
AMA J Ethics. 2015;17(3):202-208. doi:
10.1001/journalofethics.2015.17.3.ecas1-1503.