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.
Kyle B. Brothers, MD, PhD and Esther E. Knapp, MD, MBE
Direct-to-consumer genetic testing requires that physicians share decision making with patients, not order unnecessary tests or interventions, and refer to genetic specialists when necessary.
AMA J Ethics. 2018;20(9):E812-818. doi:
10.1001/amajethics.2018.812.
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.
The meaning of “disability” has shifted with US public policy changes over time. People with disability are protected under civil rights law, and open questions remain about whether and when policy-level interventions and reasonable accommodations create equal opportunity.
AMA J Ethics. 2016;18(10):1025-1033. doi:
10.1001/journalofethics.2016.18.10.pfor2-1610.
Dr Lisa Fuller joins Ethics Talk to discuss her article: “How Should Organizations and Clinicians Help Marginalized Patients Manage Loneliness as a Harm of Climate Change?”
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.
AMA J Ethics. 2017;19(9):862-872. doi:
10.1001/journalofethics.2017.19.9.peer3-1709.
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.