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.
Katherine Gentry, MD, MA and Aaron Wightman, MD, MA
A patient’s refusal of tracheostomy during an anticipated difficult intubation prompts critical questions about how to best express respect for a pediatric patient’s autonomy and whether and when deviation from standard of care is clinically and ethically appropriate.
AMA J Ethics. 2018;20(8):E683-689. doi:
10.1001/amajethics.2018.683.
Alexander Craig, MPhil and Elizabeth Dzeng, MD, PhD, MPH
Eliciting the patient’s motives and goals and helping the patient and her loved ones explore alternatives are essential to maintaining trusting relationships and open communication.
AMA J Ethics. 2018;20(8):E690-698. doi:
10.1001/amajethics.2018.690.
Peter T. Hetzler III and Lydia S. Dugdale, MD, MAR
Countering overmedicalization of death requires acknowledging that dying patients are living patients. It also requires persistent focus on health and wholeness, especially at the end of life, and a solid interdisciplinary approach to supporting dying patients.
AMA J Ethics. 2018;20(8):E766-773. doi:
10.1001/amajethics.2018.766.
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.”