Approximately two-thirds of men aged 50 and older diagnosed REM sleep behavior disorder develop neurologic disease, for which there is no prevention or treatment at present.
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.
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.
Cynthia E. Schairer, PhD, Caryn Kseniya Rubanovich, MS, and Cinnamon S. Bloss, PhD
Questions about data privacy need to be addressed when research institutions negotiate with companies developing mobile health applications. Commercial terms of use and data sharing notifications should be reviewed before use in human subject research settings.
AMA J Ethics. 2018;20(9):E864-872. doi:
10.1001/amajethics.2018.864.
Dr Anna L. Westermair joins Ethics Talk to discuss her article, coauthored with Dr Manuel Trachsel: “Moral Intuitions About Futility as Prompts for Evaluating Goals in Mental Health Care.”
Cyrus Ahalt, MPP, Rebecca Sudore, MD, Marielle Bolano, Lia Metzger, Anna M. Darby, MD, MPH, and Brie Williams, MD, MS
The teach-to-goal method should be used to assess comprehension of incarcerated patients and other vulnerable groups during the informed consent process.
AMA J Ethics. 2017;19(9):862-872. doi:
10.1001/journalofethics.2017.19.9.peer3-1709.
Research is often conducted without the knowledge or consent of those whose tissues are banked and poses possible harms to social groups if information about a few members is unscientifically applied to all.
Federal regulations governing egg donation fall into two categories: safety testing and truth in advertising. Neither deals directly with informed consent by, for example, specifying what information donors must be given.