The greatest pressure to resuscitate the extremely low-birth-weight infant often results from successful marketing efforts that lead families to expect that their premature infants will be cute and healthy.
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.
Physicians new to a case might object to an established care plan. Practice variation, clinical momentum, and how value is assigned by different parties to acute care and comfort measures can each contribute to conflict in these cases.
AMA J Ethics. 2018;20(8):E699-707. doi:
10.1001/amajethics.2018.699.
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.
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.