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.
In clinical settings, chaplains are key communicators who help mediate between patients, families, and the medical team. This month on Ethics Talk, we explore how chaplains help patients and families articulate their goals and navigate logistical and emotional challenges that arise in the hospital.
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.
The authors address the medical ethics question of whether autopsy is necessary from Cartesian and sociocultural perspectives and how to obtain consent.
AMA J Ethics. 2016;18(8):771-778. doi:
10.1001/journalofethics.2016.18.8.ecas2-1608.
Cytopathologists frequently interact directly with patients at their bedsides to perform fine needle aspiration procedures. When, if ever, should cytopathologists share preliminary diagnostic impressions directly with patients?
AMA J Ethics. 2016;18(8):779-785. doi:
10.1001/journalofethics.2016.18.8.ecas3-1608.