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.
Successful implementation of initiatives to improve screening and access to health-promotion activities at minority-serving religious institutions requires partnering with faith-based organizations, adapting interventions, and leveraging organizational infrastructure and social networks.
AMA J Ethics. 2018;20(7):E643-654. doi:
10.1001/amajethics.2018.643.
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.
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.