The question that comes to mind when one considers the risks of a clinical trial is, “Why would anyone agree to participate?” Interviews with trial volunteers and their family members make clear that often it is the appeal of discovering something new and unknown.
Tracy Shamas, MSN, APRN and Sarah Gillespie-Heyman, MSN, APRN
Veterans at the end of life have special needs due to posttraumatic stress disorder, environmental exposures, and the influence of military culture on their values. Those who die outside the Veterans Affairs health care system, however, can be at increased risk for receiving outpatient palliative care that is not sensitive to these factors.
AMA J Ethics. 2018; 20(8):E787-792. doi:
10.1001/amajethics.2018.787.
Nicole Martinez-Martin, JD, PhD, Laura B. Dunn, MD, and Laura Weiss Roberts, MD, MA
Calibrating a machine learning model with data from a local setting is key to predicting psychosis outcomes. Clinicians also need to understand an algorithm’s limitations and disclose clinically and ethically relevant information to patients.
AMA J Ethics. 2018; 20(9):E804-811. doi:
10.1001/amajethics.2018.804.
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.
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.