Mary Anderlik Majumder, JD, PhD and Christi J. Guerrini, JD
Amendments to the Common Rule and Health Insurance Portability and Accountability Act (HIPAA) raise questions about broad consent and sale of health data.
AMA J Ethics. 2016;18(3):288-298. doi:
10.1001/journalofethics.2016.18.3.pfor5-1603.
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.
Research in the PED and PICU is essential to medical understanding of the efficacy of emergency interventions. Researchers must minimize the additional stress that consent and participation in research entail for pediatric patients and their families.