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.
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 Whitney Riley Linsenmeyer joins Ethics Talk to discuss her article, coauthored with Dr Sarah Garwood: “Patient-Centered Approaches to Using BMI to Evaluate Gender-Affirming Surgery Eligibility.”
Dania Pagarkar joins Ethics Talk to discuss her article, coauthored with Drs Erin Harrop and Lisa Erlanger: “How Should We Approach Body Size Diversity in Clinical Trials?”