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.
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.
Dr Joshua D. Safer joins Ethics Talk to discuss his article, coauthored with Rebkah Tesfamariam: “How Should a Transgender Patient’s History of Deep Vein Thrombosis and Smoking Influence Gender-Affirming Health Decision Sharing?”
Dr Jane Lee joins Ethics Talk to discuss her article, coauthored with Drs Gabriel Robles and Latoya Small: “What Should Students Learn About the Importance of Cultural Brokering in Immigrant Communities?”
Treatment decisions in high-risk situations require a dynamic relationship between doctor and patient in which patient preferences and clinician recommendations contribute equally in shaping a final treatment decision.