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.
If health information is private, why do we know so much about Prince’s death? Critical legal and ethical questions remain unsettled about whether and when it is appropriate for medical examiners or coroners to release information from autopsy reports to the public.
AMA J Ethics. 2016;18(8):839-842. doi:
10.1001/journalofethics.2016.18.8.msoc2-1608.
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.
Giving undocumented immigrants and those with DACA status (DREAMers) access to health care and medical education enables them to contribute to these systems.
AMA J Ethics. 2017;19(3):221-233. doi:
10.1001/journalofethics.2017.19.3.peer1-1703.
Dania Pagarkar joins Ethics Talk to discuss her article, coauthored with Drs Erin Harrop and Lisa Erlanger: “How Should We Approach Body Size Diversity in Clinical Trials?”