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.
Anne Drapkin Lyerly, MD, MA and Ruth R. Faden, PhD, MPH
Participation in a research study—in which there are rigorous standards and close monitoring—may be a safer context for the use of medications in pregnancy than the clinical setting, where the evidence base is lacking.
When identifying underrepresented subgroups deserving of special recruitment efforts for research participation, social determinants of health other than race should be given more consideration.
In 2014, the Department of Health and Human Services and the National Institutes of Health published proposals to expand clinical trial registration requirements and to promote sharing of clinical research data, but these and other efforts at improving data transparency and access need to be supported by changes in the academic reward structure and significant funding.
AMA J Ethics. 2015;17(12):1152-1159. doi:
10.1001/journalofethics.2015.17.12.pfor1-1512.