Dr Emily Roberts joins Ethics Talk to discuss her article: “How Innovative Designs Can Help Ease Ethical Tension in Good Dementia Caregiving and Decision-Making.”
Large precision health initiatives like the National Institutes of Health’s All of Us campaign raise important ethical questions about consent, privacy, and inclusivity. This month on Ethics Talk, we explore with Dr Katie Johansen Taber and Ysabel Duron strategies for protecting participants and ensuring that diverse communities are represented.
Dr Nancy Krieger talks about the importance of good science to inform public policy that address longstanding health inequities during this COVID-19 pandemic and beyond.
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.
Mandatory genetic testing of health care professionals could help structure health care organizations’ responses to a pandemic. Patients and more susceptible employees can benefit, and these benefits must be weighed against concerns about fairness, autonomy, genetic privacy, and potential loss of employment opportunities.
AMA J Ethics. 2018;20(9):E819-825. doi:
10.1001/amajethics.2018.819.
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.
Holly K. Tabor, PhD and Aaron Goldenberg, PhD, MPH
Rare genetic disease research has something to teach precision medicine about addressing some patients’ limited access to treatment. Health disparities exacerbated by high costs and limited availability of drugs can, perhaps, be mitigated when patient activism accelerates drug development.
AMA J Ethics. 2018;20(9):E834-840. doi:
10.1001/amajethics.2018.834.