Community-based participatory research ensures that community protections, risks, and benefits are considered during ethical reviews of research protocols.
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.
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.
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.
An emerging medical ethics issue is whether to delay posting pathology reports to electronic health records (EHR) to allow clinicians time to follow up.
Cyrus Ahalt, MPP, Rebecca Sudore, MD, Marielle Bolano, Lia Metzger, Anna M. Darby, MD, MPH, and Brie Williams, MD, MS
The teach-to-goal method should be used to assess comprehension of incarcerated patients and other vulnerable groups during the informed consent process.