Community-based participatory research ensures that community protections, risks, and benefits are considered during ethical reviews of research protocols.
AMA J Ethics. 2017; 19(10):989-998. doi:
10.1001/journalofethics.2017.19.10.ecas3-1710.
People have a social obligation to conform to the general rules of sleeping: sleep at night, in a bed, in a private place away from public view, and in proper attire.
Physicians make patients aware of those interventions that they (the patients) may then refuse. In short, informed consent is less about patient decisions than it is about restraining physicians.
Public and private choices about allocation of funds for research raise a social-justice question: are these funding sources making fair decisions about where to invest their resources? The NIH has the clearest obligation to do so because it is taxpayer-supported.
The question that comes to mind when one considers the risks of a clinical trial is, “Why would anyone agree to participate?” Interviews with trial volunteers and their family members make clear that often it is the appeal of discovering something new and unknown.
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.
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.