Sometimes, life-saving treatments have serious negative consequences. This month, AMA Journal of Ethics digital editor Amelia Thomson-DeVeaux discusses strategies for communicating about iatrogenic outcomes with Dr. Robert Nelson, a senior pediatric ethicist with the Food and Drug Administration, with a particular focus on how to enlist parents as allies in high-stress pediatric cases.
AMA Journal of Ethics theme editor Renee Mao, a third-year medical student at the George Washington University School of Medicine and Health Sciences, interviewed Dr. Tarris Rosell, PhD, DMin, MDiv, about strategies for incorporating spiritual care into oncology.
Barriers to effective prognosis conversations include knowledge deficits, misconceptions, cultural differences, and lack of motivation. These can be addressed head-on by good communication interventions.
AMA J Ethics. 2018;20(8):E757-765. doi:
10.1001/amajethics.2018.757.
Kyle B. Brothers, MD, PhD and Esther E. Knapp, MD, MBE
Direct-to-consumer genetic testing requires that physicians share decision making with patients, not order unnecessary tests or interventions, and refer to genetic specialists when necessary.
AMA J Ethics. 2018;20(9):E812-818. doi:
10.1001/amajethics.2018.812.
Mandatory genetic testing of health care professionals could help structure health care organizations’ responses to a pandemic. Patients and more susceptible employees can benefit, and these benefits must be weighed against concerns about fairness, autonomy, genetic privacy, and potential loss of employment opportunities.
AMA J Ethics. 2018;20(9):E819-825. doi:
10.1001/amajethics.2018.819.
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.