International debate about human genome editing governance has undergone a paradigm shift and suggests that inclusive public deliberation is still important.
AMA J Ethics. 2019;21(12):E1065-1070. doi:
10.1001/amajethics.2019.1065.
Lee C. Zhao, MD, Gaines Blasdel, Augustus Parker, and Rachel Bluebond-Langner, MD
Tension between realistic goals and unrealistic views about how to achieve them is compounded when patients are eager to revise a prior surgeon’s gender-affirming procedure.
AMA J Ethics. 2023;25(6):E391-397. doi:
10.1001/amajethics.2023.391.
Dr Laura Kolbe joins Ethics Talk to discuss her article, coauthored with Drs Ryan H. Nelson, Joelle Robertson-Preidler, Olivia Schuman, and Inmaculada de Melo-Martín: “Is a Video Worth a Thousand Words?”
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.