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.
After years of funding disease-specific treatment, donation trends have shifted to support broader health systems infrastructure development. A remaining challenge is how to sustain antiretroviral therapy (ART) for patients in resource-poor regions.
AMA J Ethics. 2016;18(7):681-690. doi:
10.1001/journalofethics.2016.18.7.ecas3-1607.
Introduction of an intervention that reduces the perceived risk of a given behavior may cause a person to increase risky behavior—this is called “risk compensation.”
Preventing bad outcomes for teens and their offspring was the impetus behind confidential care for reproductive health. Requiring parental involvement created an obstacle to the provision of necessary care.
Developing technologies for personalized medicine may be misused to popularize the idea that one can infer a person’s genetic makeup from observer-defined or self-reported assignment to a race or ethnic group.
Some commentators say comparative trials of FDA-approved drugs are overburdened by current Common Rule regulations and that researchers should not be required to obtain explicit consent for participation in the most innocuous of these trials.