Public and private choices about allocation of funds for research raise a social-justice question: are these funding sources making fair decisions about where to invest their resources? The NIH has the clearest obligation to do so because it is taxpayer-supported.
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.
Katherine Gentry, MD, MA and Aaron Wightman, MD, MA
A patient’s refusal of tracheostomy during an anticipated difficult intubation prompts critical questions about how to best express respect for a pediatric patient’s autonomy and whether and when deviation from standard of care is clinically and ethically appropriate.
AMA J Ethics. 2018;20(8):E683-689. doi:
10.1001/amajethics.2018.683.
Alexander Craig, MPhil and Elizabeth Dzeng, MD, PhD, MPH
Eliciting the patient’s motives and goals and helping the patient and her loved ones explore alternatives are essential to maintaining trusting relationships and open communication.
AMA J Ethics. 2018;20(8):E690-698. doi:
10.1001/amajethics.2018.690.
Peter T. Hetzler III and Lydia S. Dugdale, MD, MAR
Countering overmedicalization of death requires acknowledging that dying patients are living patients. It also requires persistent focus on health and wholeness, especially at the end of life, and a solid interdisciplinary approach to supporting dying patients.
AMA J Ethics. 2018;20(8):E766-773. doi:
10.1001/amajethics.2018.766.
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.
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.
Dr Lisa Fuller joins Ethics Talk to discuss her article: “How Should Organizations and Clinicians Help Marginalized Patients Manage Loneliness as a Harm of Climate Change?”